I could offer my own experiences with cramping, period and rectums, but I choose to tell you how adorable you are. Maggie, you have a very special talent for connecting with people. I am 70. Wow, that''s hard to write. My husband died recently after 50 years together and I swear I put you on for company...friend company. Whenever you and Zak drive into Philadelphia, you pass by the apartment I lived in when we met. You are an amazing young woman and have inspired me in so many ways. I'm sorry you have to go through all this mess but like my mentor said, "Life is a suffering." His English wasn't as good as his Russian, his original language. You have really circumvented your issues and created wonderful life. BTW, my daughter is 25 and fabulous. We adopted her at 3 hours old. They kicked us out of the hospital. I took her to Wendy's because it was so hot and we needed water. She loves the story.
Had my surgery in 1991. Had phantom attacks for about a year, I call them my F4 attacks, got over them fairly easy. Im 67 now.Thanx dear you're very courageous!!!
I have tethered cord syndrome and have a neo-appendicostomy and will probably need an ileostomy in the future. There's no nerve activity in my colon and bladder. I'm also a nurse and thought I was well informed, until I started listening to your videos. I've learned so much. Because if my spinal cord problems, I have bladder and rectal spasms, so understand where you're coming from. The day I'll need my ileostomy, I'll be prepared thanks to your videos. Thanks Maggy. ❤️(I really like the fact that you're not shy to talk about it. It makes life a lot easier) .
I started watching your vlog out of curiosity. I don't have any of these issues but have learned empathy for the folks that do. You are amazing informative with out embarrassment, thank you.
Wow, I never considered that you could have phantom rectal spasms or sensations. We’ve all heard of phantom limb, of course, and your pelvic nerve endings have also been cut, so of course you would experience phantom organ sensation. I hope you can find relief. You have been through a lot for such a young woman. God bless you, Maggie and Zac, and for the work you do here.
I do not have your GI problems specifically, but I have Lupus that affects almost every organ system in some way. I just want to say thank you for being so awesome at what you are doing. You take time out of your crazy life of renovating a barn for a wedding venue, being newly married, dealing with your medical issues, (even when you are so ill) to make these videos that deal with so many issues that people are dealing with. It is awful how little time doctors spend with their patients discussing all these things. Patients are left trying to find anyone that can help answer questions. And so many of these topics are so embarrassing to them. Finding someone with your nursing background and that can cover these topics with facts AND compassion is so rare. So I just want to say thanks. You are such a cool, intelligent, beautiful lady. I send you lots of positive thoughts, love, load of wishes for healthy days and hope for the amazing future you deserve.
Hi Maggie. I've been a silent sub, I may of commented 3 times ish.... There ARE so many AMAZING exercises for pelvic exercises on UA-cam! If your not feeling well and NOT exercising as MUCH, that will definitely cause weird pains, spasms,discomforts and pelvic strange symptoms. The more active you are, even a 10 to 15 minute steady walk, if you can do longer walks EVEN better, but walking and increasing heart rate , works so well with ALL our body functions! Love you ! Wish you PEACE through this and COMFORT ! Love and light Take care♡ Mary
I had a hysterectomy at the age of 50. Everything was removed cervix uterus tubes ovaries everything. Every now and again I feel like I’m gonna get my period. It lasts for an hour or so and goes away, but I still to this day get the feeling I’m gonna get my period. It actually feels like it’s going to gush which may sound a little gross but I think you know what I mean.
I completely agree with you Maggie. I have rapid transit and malabsorption, on TPN because of it. People constantly tell me all I need to do is eat… they just don’t get how much pain it can cause and how it just doesn’t work. Thank you for talking about this part of GI issues.
Oh my goodness!! It's awful, you and I are the same in this diagnosis. I have many health conditions that all suck, but this is brutal on the entire torso. I wish you relief!!
I get something similar on a daily basis...so frustrating. I did want to just mention the iron supplement I use to you, it's called Feosol Complete. All other oral iron supplements make me very sick but this one does not! It came high recommended by other Crohn's/UC patients because its so gentle on the tummy. Just wanted to mention it to you incase your iron pills make you nauseous at all, feeling like that is so miserable. Thanks for all you do for the IBD community Maggie, we love you!
I found your channel while looking at colonoscopy videos. I'm getting a colonoscopy tomorrow morning. I started listening to you and I couldn't stop. I love listening to you. You are so open and natural. Thank you!
I so appreciate your honesty. I understand completely what it feels like to go thru horrible spasms. It is so difficult to describe to others...but you do it with competency and compassion. Though I don't have Crohn's, I have a whole host of other auto immune problems that result in my suffering with IBS-D. Your efforts here make a huge difference...Thank you!!❤
Same~Several...Like the most horrible menstrual cramps coming off the Rectum😢...Will actually awaken as it begins, and then can go several minutes to half an hour:(
Hi I’m a new subscriber and your channel just turned up on my feed out of nowhere!! It was fate! I have Crohns Disease too and an ileostomy! I have been having Phantom rectal pressure and Bladder spasms for years and no one has been able to find the cause! I had never heard of pelvic floor therapy before but I’m seeing a new GI doctor soon and going to ask about it! The only thing that helps is sitting on the John like you said !! Crazy! It was Fate that I saw you’re video!!💜💜Thank you so much!!
Wonderful video about real issues we face and bounce back from on a daily basis. You do make me smile Maggie with your happy attitude and it's infectious ❤. My phantom rectum I decided to rid of once and for all a few days post operative, and asked my body and specifically my rectum to live out what it wanted to say one night whilst I was sleeping and on meds post operative. It was a night of very crazy dreams whilst the nerve endings gave out their phantom messages, and was happy from then on in, in being silent. That worked for me anyway. Many different ways of dealing with such like, and I can fully appreciate the squatting on loo stance works too. Brilliant.
Hello Maggie. I just wanted to say that UC definitely made me want to avoid food. I found that about twenty minutes after eating I would feel tense and my colon would start to gurgle and rumble, I also worried that I would suddenly need the bathroom. This would continue for some time and when my digestive system finally relaxed it was time to eat again! Thankfully I have been in remission for a long time now so this is no longer a problem but I completely understand how you feel about food sometimes. Also I can't be sure but I think that tea can reduce the body's ability to absorb iron so it is best not to take iron supplements within half an hour of drinking tea. I suggest you do some research on this as it may only be a problem with black tea. Take care and sending best wishes from the UK.
Iron will help your energy level Glad your taking Vitron C works well for me. Sometimes I change out to “Country life Easy Iron “ Best to you always ❤️
Maggie - have you considered some of your symptoms you describe could be pudendal neuralgia from so many surgeries ? Do some reading on it, bc there are blocks they can do that really help if so .
I get phantom rectum pain every so often too. It does not feel good at all. It's so interesting how we both tend to get it around our periods. I sit on the toilet too! "Pushing" seems to help relieve the spasms. I hope you're feeling better now.
I also struggle with keeping food. Try eating your normal meal but in a longer time frame. Kind of like “snack” on it. I eat a meal in sections basically over a span of 3-4 hours instead of in one sitting and it makes a huge difference. Annoying but works for me.
Sounds like you are going in the right direction. Really hard to pinpoint what is or isn't working at times with so many health conditions. I go through the same thing. Also not wanting to take insulin at times (just like not wanting to eat at times) because it is going to make me too low or the food too high. It is crazy. I do not have IBD but IBS. I used to have the fun symptoms you mentioned almost everyday. No doc could diagnose me. I am a lot older and it has calmed down a lot. Some of it was due to stress and high pressure jobs. Grateful I no longer have that stressor any more. On disability due to autonomic nerve damage.. Never know when I will wake up and be dizzy most of the day or when I am getting dehydrated and also I don't sweat. Just mentioning. The opposite of phantom pain. Not recognizing nerve signals because they aren't happening. One day at a time I am doing better. Bless you Maggie. Your attitude and matter of fact way of presenting what you go through really helps me. I have had my main chronic condition T1 diabetes since I was 17. It caused the autonomic dysfunction after having it for 40 years. During the pandamic I started listening to you. I was told once since I have had flare ups of diverticulitis that I could have to have an ostomy soon. However, that was 7 years ago my doc told me that and I haven't had a flare up since. Not sure what I did different, but listening to you I think if I had to have one I would not nearly be as horrified as I used to be about it :) Thanks for listening.
I’ve got IBD and in August of this year, I had 9” of my colon removed due to a stricture and mass of diseased colon tissue. No ostomy! It took me from Nov. 2019 until this August to be diagnosed! Lame G.I. Doctor. Fired all my doctors, got all new. I am having an inner-stim surgically placed to help my incontinence, both bladder and rectum. They found a lot of Diverticulitis during the surgery. It’s been a long and hard road. No ostomy but I worry if this issue will plague me for the rest of my life! My pelvic floor is horrible! Most days I am weak and tired! Who knows!
Sorry Maggie that really sucks. I have spina bifida occulta, unfortunately the form that caused issues and had a tethered spinal cord which I had surgery on a few years ago. I have issues ranging from neurogenic bladder (retention), nerve damage, neurogenic bowel and endometriosis. You make a great point about the pelvic floor, and everything in that area is so close that one thing affects another affects another... Can make it very difficult at times to figure what causes what and what is a side effect... All the best for your future health!
I have a rectal stump, nocolon and the spasms are extreme. I do have discharge at times, once it harde Ed and had to have this golf ball sized hardened mucous manually removed during a colonoscopy. Helped big-time. Now have a fistula from rectal stamp to vagina...ugh..discharge from the vagina has stopped so hopefully fistula is healing.
This is sooooo frustrating Maggie totally relate 💜 I have problems sleeping too I don't sleep all night some nights I get out of bed and do something else hope you feel better soon Maggie💜
I kept meaning to tell you that I bought a vibrating heating pad on Amazon and it's a life changer. It helps the air vibrate up or out and you can use it with or without heat. I would have killed for this after my surgery. I hope it helps you and others.
Maggie I understand your relationship with food. I have an ileostomy and I am not absorbing a lot. I also am getting dehydrated. So my doctor's say eat more and drink more. But if I drink too much I don't have room for food. When I eat I don't have a lot of room for drinking. I feel so so tired and sick and just want to eat and drink what I can. Not always having to force food or drink. So I get it. So sad that you have to go through this. Big hugs and many blessings to you
The struggle with food mentioned around 12 minutes in is essentially my entire life, no one gets how eating more and what you eat simply doesn’t matter when your GI doesn’t work. I’m 35 and have been belching around the clock/suffering from constant indigestion since I was 15, No GI specialist or doctor has really figured out why or diagnosed a root cause. Physical activity makes me belch, indigestion/food makes me belch, even while doing nothing air builds up all the time and I have to belch, it just never ends. I haven’t been able to have any stability in my life whatsoever socially or with work. I’ve thought about getting rid of the colon a bunch of times but never seem to have it as an option with my doctors. I was around 130 lbs at 15 and been around 110 ever since, doesn't matter how much or what I eat.
It actually makes sense that this happens usually on your period. Your body releases prostaglandin so the uterus will contract, but this can also lead to cramping and spasming in other areas too. I get pretty regular muscle spasms, but they definitely increase on my period, there are also many people (who still have rectums) that describe a lightning, shooting pain in their rectum during that time as well. I know it's phantom pain, so that might work a bit differently, but maybe it's caused by spasms somewhere in your pelvic floor? I think it's awesome that your openly sharing you experiences, younger you and current you should be proud💜
Brave of her to talk about these issues, I don't know if there's anyone else dealing with similar issues talking about it in this way, probably helps that she's a nurse. Anyway her videos are so informative.
I just said this too! I couldn’t remember the name of the hormone though. I learned about it when I was in labor because of an induction method my midwife recommended.
I completely agree with you Maggie, I also never had a good relationship with food and lately even more so. It feels useless to eat and few minutes later everything is just gushing out, was placed on. loparemide, but do not want to take it every day. All of the best Maggie, hugs to you, Zak and your furbabies. 😍❤️❤️❤️❤️
I found the information about the impact on the pelvic floor so informative; thank you. I know what to do now. I think I have neglected this area. Your looking better. Love to Zac. Take care. UK hugs coming over the airwaves.
You amaze me with your frank presentation of a topic that would make most people squirm. This may be an off colour comment, but the, "Phantom Menace" sounds like a B horror movie. You're great Maggie.
Did you ever think of a warm bath instead of sitting on the toilet? Maybe the warm water might be better than a heating pad simply because of the wet heat. I know you can swim so a bath might be o.k., at least a sitz bath. Maybe it would relax the whole area? It's just a thought and might work. It's like pain in a removed limb. If you can divert the signal to the brain it might diminish sooner. You are probably right about the pelvic floor exercises. Gee, I hope you feel better. You have had a lot of hassle lately and you deserve a long break.
I was having issues with dehydration all the time even thou I drank sufficient amounts of fluid. This doctor at emergency told me to put a pinch of sea salt in my water, amazingly enough it's been helping. Keep on being you Maggie, I'm sorry your not feeling the best.
What about using a doughnut pillow (like they give you when you break your tailbone)? The concept of sitting on the toilet without having to constantly get up.
Hey Maggie Don here I know what you mean by animal problems I don’t have a bladder but sometime I thought I have to go to the bathroom to tell Zach hi for me I’m glad he’s with you
Hi Maggie , I been having health problems. I kniw about rectum spasms. Horrible pain. I usually sit in warm water. I use a heating pad. I take muscle relaxers. Yes I cry. I feel for you. Hope your sinis infection gets better soon . I just got over one and it took lot of antibiotics to get rid of it.
have you thought about TPM liquid nourishment ? is that an option for you … maybe to supplement your low food intake and it may add more weight …? just a thought … hope you feel better Maggie … thanks for sharing …
Hey Maggie Long time no talk...but I have been following you !!! Fathom rectum yes it exist...I get it when I am bloated...sit on toilet and it's gone...lol I think I will pass gas and nothing happens!!! I have been so tired lately and guess what my ferritin is low...so another iv off iron now!!! Even vitamins don't digest in my small colon!!! Take care you sweet person you!!!
Hi Maggie, since you mentioned your phantom rectum acts up around your period, that actually makes sense...the hormone that stimulates your uterus to cramp also stimulates muscles in the "neighbourhood" (that's why period diarrhea is a thing). I know you don't have the colon, but it's possible either your surrounding muscles or your brain is affected by the hormone. Also, glad the iron is helping and not harming! Wrecked my stomach on iron salts until I discovered a plant-based iron I could tolerate, which I could talk long term (Ferrous Bisglycinate...Webber Naturals makes a really affordable one that also has vit c, folate and B12).
As for the iron supplements, I’ve heard they can be notorious for causing constipation, so maybe that for you is becoming beneficial considering you’re having issues with loose output 🤔
Hello and I have had the stomach issue were I feel much better when I don't eat as well .I understand that you need to eat to stay healthy and alive but it's a real battle as with my chron's I can't have dairy or wheat as my body shuts down and I am sick for a week or so I don't have a bag but I know the feeling you get .like you said you feel offal when you eat and it just doesn't stay with you .I hope you feel better soon and get on the right track for you !!! Thank you for sharing and take care. Rest if need to ....
Sorry that’s frustrating! I got pelvic floor therapy because I was sometimes getting rectal spasms after orgasim talk about frustrating! I should start doing the exercises again too!
Hoping for more improvements. I used spinach iron from a national health food store. That's all it was and called. You are a nurse, so you already know B12 helps absorb iron and VitD. My D level was rock bottom and seemed to promote more absorption issues and GI blues. Learned I should talk to someone about that dialator. There are beads I tried that actually helped inserting an hour every other day. Not comfortable though. Take care of yourself.
I’m so sorry your body is so difficult to live in. I wish l could hug you when you’re having a bad time. Have you tried acupuncture? Not the local person, but an elderly Chinese specialist? It sounds like your whole system needs help. Maybe you could drink Athletic Greens and give up a couple of meals a day? Your trials and reporting them is your life’s purpose. You deserve so much respect and admiration. Love and healing hugs from Australia.🌈🐨🦋💕
Phantom bowel pain. That sounds painful. I take anti-gas med thats otc. I'm super sick so I know how you feel. My heart goes out to you and I will pray for you 🙏 ❤ Let us know how the barn is going.
I actually am a rectal cancer pt w/out a rectum. While undergoing chemotherapy I had an ileostomy. I actually have phantom pain from where I had the ostomy have since had an ostomy reversal. I also experience rectal spasms and there is medication you can take. Check with your GI…Hyoscyamine. Worth an ask 😊
I had colorectal cancer. I have an ostomy forever. I have constant pain in colon and rectum. I leak from rectum and stoma. Most food goes through me quickly. Doctors don't have any answers. Can you recommend any medicines over the counter and prescriptions for this problem? Thank you.
The topic of food and how eating more doesn't help/do anything beneficial. I don't know if anyone already mentioned it and/or you have already tried, but could those liquid meals / powder meals work for you? The "meal replacement powder" thing, I can't remember any specific brand available in the U.S. 🙈 Just thinking if those nutrients might be easier for your GI to process and absorb, so you would be able to have the necessary vitamins, minerals etc. for your body to function. Either way, I hope you'll feel better soon and start getting some positive results now that you have a new GI doctor and they seem to be good (based on your previous video). ❤
I have a history of painful rectal spasms that are connected to a weak pelvic floor (which is also connected to overactive bladder issues). Mine were caused by sexual activity, bowel movements and menstruating. I’d be curled up in a ball of pain, freaking my husband out. I’m better now, perhaps due to being in menopause?? Who knows) and yes…pelvic floor PT is amazing! But alas, I need to go back for the bladder stuff.
Hey Maggie 😊 I have gut issues. I recently found that a UA-camr I have just started following has a second channel from years ago that outlines her struggles with gut issues. Well I have watched her journey and decided to order, through her link, the product that has helped her the most. I am sure you already know about this product, but I have to say that it has helped me sooooo much! Her name is Jeanne Martin and her old channel name is “A Gut Feeling” I bought the chews to begin with to see if it might help my sick gut. I started low and slow, and I have to say that after 2 weeks I do see improvement. I am just letting my body get use to the chews. Jeannine says in one of her videos to start low and slow. The company that she chose even sent me more information in the mail after ordering from Jeannine 😮🙌🏻👏🏻🎇
I had a TAC w/IRA. I starting having them out of the blue about 3 months post-op-- they were so intense and painful. Girl, I showed up at my surgeon's office like nah this ain't gonna work. He prescribed me 540 Levsin. 🤣 What's bad is when you aren't getting the "I gotta go" sensations and you put too much emphasis on one word, cough, sneeze etc and well.. you know 😳 Granted, that may just be me-- I have nerve damage which caused all of my GI issues.
"I have a weird relationship with food." The history of my life since I was teenager. I keep changing my diet to control my GI issues and I hate it. I am always craving food that I cannot eat.
People dont get it when u choose "not eating but feeling ok", over "eating like everyone else but feeling like nobody can understand"... i can only eat once a day and once i eat, the day is over, if u get what i mean 🤐. * i hope u feel better soon sweetie ❣
Before my hysterectomy little over 9 years ago, I’d often have my IBS flare up big time when having period cramps because my cramping uterus would trigger my intestines. While you don’t have your colon and rectum, maybe there’s something left in there related to that area that your uterus could be triggering? Any muscles or nerves related to the butt area that is left behind when you have the surgery? Just me thinking out loud here
Thank you for the helpful tip ! I had phantom rectum problems,also. I am not sure how many times. I have an ileostomy ,also. I also had blockage. I didn’t know it could happen,since I have a stoma! I had surgery in2001 ! I am 75yo! I may have a portion of rectum. Not sure.
I agree that eating should be fun. Dr Zach Bush says we should not label ourselves as vegetarian or carnivore or anything else and that we should eat what we enjoy for eating is not just about nutrition it is also about the experience.
I have recently been diagnosed with IBD. It’s comforting to know what it is but seems like this illness is so unique to each individual. I’ve frequently suffered with dry mouth and often get oral thrush - am I the only one who experiences this? Unsure if linked to IBD or not.
QUESTION. I don’t have chrons but I eat and a few minutes later I have explosive diarrhea no matter what I eat. If I have to leave home say at 2pm and don’t get home till 5 or so I won’t eat all day till I get home. I see a GI Dr he thought if I had my gallbladder removed it might help with the nausea that I have all day most days, it helped some but not much. Imodium use to help but now 2 only helps for 3-4 hours. Can you suggest any questions I should as my GI? I’m 72 and this has been going on for over 10 years
I have an ileostomy and most of my colon and my rectum. I never have any discharge. I know that sounds unusual, but that’s just how it is in my case. What I do have, though, are rectal spasms - quite often, actually. I find them very painful and I still go to the toilet and press, even though nothing will come out. I just can’t help it. Any tips?
Maggie, do u have a retro tilted uterus? Mine is and I get a lot of rectal spasms too around ovulation and menstruation. I also have no colon w ileostomy (but I do have a rectum still).
What does that mean, i just went to the hospital because I thought I felt a mass insise my rectum, turns out it is my uterus one can feel through my rectum, and the doctor that did the examination (the one like coloskopy but just in the rectal area) and feeling with his fingers said it is was sitting tilted(he used the Danish word forskudt) And now I am soo confused I do not have colostomy, I have all my organs, but have had some strange sensation from my bladder and rectum lately I have asked for a gynaecologist appointment Sorry for asking, but I thought maybe you guys could make me wiser
Hello Maggie I am a 54 year old man and I had the last piece of colon and rectum removed in 2018 and I get cramping and lots of phantom pain which can drive you crazy
Phantom rectal spasms 100% are real. Heating pad between my legs is my first attempt. If I still have the pain I hop into a extra hot bath in a squatting position for as long as I need. I also have someone assist in acupressure on my sacrum. I do as much possible w/out meds but a cyclobenzaprine really takes my "broken butt" pain away. As far as not wanting to eat it's totally understandable. I can go for yrs at a time only consuming 1 Spiru-tein shake w/rice milk and 1/2 Pedialyte, and water PRN a day.......nothing else. Absorption feels and looks nonexistent when my bag looks just like what I ate. I mean how much nutrition am I getting if the food comes out looking the same. Best of luck. I am a female so I can relate to the period stuff. Asher is actually my grandson. :)
I have really bad phantom rectum. I used to have a perianal fistula with a seton band for 9-10 years. Had so many complications and so many operations. The seton kept the fistula open so it could drain but also the knot in the band would block the drainage!👍🏼 So now I have an ileostomy and no “assholeo”, my phantom rectum still feels unbelievably painful. I have to have Codeine or morphine daily to stop the horrible feeling😓
I also had a seton placed 1.5 month ago, very painful post surgery time( is it possible to live with seton for 9 years without big issues? please tell a bit more about your experience, doctors do not provide any forecasts(
@@igorkarasik6273 Sorry you’re feeling the pain too! Basically I had to have multiple operations through the 9-10 years. Sometimes the band snapped, other times the band knot would slide into the fistula, blocking the drainage causing another abscess to form, making me need more surgery. I had granulation around the fistula too, so I had to go in hospital daily to try and burn it with silver nitrate, hurt like hell! In the end it all fucked up and the fistula perforated my rectum twice, causing faeces to go throw the fistulas rather than my asshole. Was fucking horrible! The surgeons were absolutely useless which didn’t help either. So yeah, a seton isn’t the best, but it’s pretty much the only option sadly. If you wanna know anything let me know and I’ll try help out!👍🏼
@@Bert3HD thank you for your reply. i totally understand how painful it was for you(( fistula was also crohn related? it was simple or high complex one? i did not know i had crohns until 35...passed 3 surgeries this year. if possible can you give me some tips how to deal with it
@@igorkarasik6273 Mine was in the superficial area, think that’s high? I’m afraid I literally have no more tips sadly. Only thing I done was made sure to do was keep the drainage clean and use a dressing after. Hope I helped in some way!🙂
@@Bert3HD thank you! i just wanted to ask what did you try to heal fistula instead of seton? any meds ? or seton is just helping to postpone time of rectum removal? was it possible to travel with seton, do sports? sorry, many questions, but i am in a panic after diagnosis(
I could offer my own experiences with cramping, period and rectums, but I choose to tell you how adorable you are. Maggie, you have a very special talent for connecting with people. I am 70. Wow, that''s hard to write. My husband died recently after 50 years together and I swear I put you on for company...friend company. Whenever you and Zak drive into Philadelphia, you pass by the apartment I lived in when we met. You are an amazing young woman and have inspired me in so many ways. I'm sorry you have to go through all this mess but like my mentor said, "Life is a suffering." His English wasn't as good as his Russian, his original language. You have really circumvented your issues and created wonderful life. BTW, my daughter is 25 and fabulous. We adopted her at 3 hours old. They kicked us out of the hospital. I took her to Wendy's because it was so hot and we needed water. She loves the story.
I'm sorry for the loss of your husband.
Had my surgery in 1991. Had phantom attacks for about a year, I call them my F4 attacks, got over them fairly easy. Im 67 now.Thanx dear you're very courageous!!!
I have tethered cord syndrome and have a neo-appendicostomy and will probably need an ileostomy in the future. There's no nerve activity in my colon and bladder. I'm also a nurse and thought I was well informed, until I started listening to your videos. I've learned so much. Because if my spinal cord problems, I have bladder and rectal spasms, so understand where you're coming from. The day I'll need my ileostomy, I'll be prepared thanks to your videos. Thanks Maggy. ❤️(I really like the fact that you're not shy to talk about it. It makes life a lot easier) .
I started watching your vlog out of curiosity. I don't have any of these issues but have learned empathy for the folks that do. You are amazing informative with out embarrassment, thank you.
Wow, I never considered that you could have phantom rectal spasms or sensations. We’ve all heard of phantom limb, of course, and your pelvic nerve endings have also been cut, so of course you would experience phantom organ sensation. I hope you can find relief. You have been through a lot for such a young woman. God bless you, Maggie and Zac, and for the work you do here.
I do not have your GI problems specifically, but I have Lupus that affects almost every organ system in some way. I just want to say thank you for being so awesome at what you are doing. You take time out of your crazy life of renovating a barn for a wedding venue, being newly married, dealing with your medical issues, (even when you are so ill) to make these videos that deal with so many issues that people are dealing with. It is awful how little time doctors spend with their patients discussing all these things. Patients are left trying to find anyone that can help answer questions. And so many of these topics are so embarrassing to them. Finding someone with your nursing background and that can cover these topics with facts AND compassion is so rare. So I just want to say thanks. You are such a cool, intelligent, beautiful lady. I send you lots of positive thoughts, love, load of wishes for healthy days and hope for the amazing future you deserve.
I have Lupus aswell.
Hi Maggie.
I've been a silent sub, I may of commented 3 times ish....
There ARE so many AMAZING exercises for pelvic exercises on UA-cam! If your not feeling well and NOT exercising as MUCH, that will definitely cause weird pains, spasms,discomforts and pelvic strange symptoms. The more active you are, even a 10 to 15 minute steady walk, if you can do longer walks EVEN better, but walking and increasing heart rate , works so well with ALL our body functions!
Love you !
Wish you PEACE through this and COMFORT !
Love and light
Take care♡
Mary
I had a hysterectomy at the age of 50. Everything was removed cervix uterus tubes ovaries everything. Every now and again I feel like I’m gonna get my period. It lasts for an hour or so and goes away, but I still to this day get the feeling I’m gonna get my period. It actually feels like it’s going to gush which may sound a little gross but I think you know what I mean.
I had a hysterectomy at the age of 36 and I used to have the same feeling quite regulary. I didn't like it...
Lately I feel like I’m ready to ehployed
My comp is messed up, see you again later today
I have the same thing, Lisa. I had a hysterectomy at 39 which is 27 years ago, but it still happens. It’s a really weird feeling.
I had one done when i was 34 and im 36 now. And i also grt phantom pains
as a RD, I encourage people to eat and enjoy foods that you can absorb and metabolize that you digest efficiently with the least discomfort
I completely agree with you Maggie. I have rapid transit and malabsorption, on TPN because of it. People constantly tell me all I need to do is eat… they just don’t get how much pain it can cause and how it just doesn’t work. Thank you for talking about this part of GI issues.
Oh my goodness!! It's awful, you and I are the same in this diagnosis. I have many health conditions that all suck, but this is brutal on the entire torso. I wish you relief!!
I hope you feel better soon. I come here from time to time and your videos do make me fell less lonely, so thanks for that 🤗
Praying for you sweetie!
I get something similar on a daily basis...so frustrating. I did want to just mention the iron supplement I use to you, it's called Feosol Complete. All other oral iron supplements make me very sick but this one does not! It came high recommended by other Crohn's/UC patients because its so gentle on the tummy. Just wanted to mention it to you incase your iron pills make you nauseous at all, feeling like that is so miserable. Thanks for all you do for the IBD community Maggie, we love you!
I found your channel while looking at colonoscopy videos. I'm getting a colonoscopy tomorrow morning. I started listening to you and I couldn't stop. I love listening to you. You are so open and natural. Thank you!
I so appreciate your honesty. I understand completely what it feels like to go thru horrible spasms. It is so difficult to describe to others...but you do it with competency and compassion. Though I don't have Crohn's, I have a whole host of other auto immune problems that result in my suffering with IBS-D. Your efforts here make a huge difference...Thank you!!❤
Same~Several...Like the most horrible menstrual cramps coming off the Rectum😢...Will actually awaken as it begins, and then can go several minutes to half an hour:(
You are a brave young woman to share this and live with this,I am 68,don't think I would want to live anyymore
Hi I’m a new subscriber and your channel just turned up on my feed out of nowhere!! It was fate! I have Crohns Disease too and an ileostomy! I have been having Phantom rectal pressure and Bladder spasms for years and no one has been able to find the cause! I had never heard of pelvic floor therapy before but I’m seeing a new GI doctor soon and going to ask about it! The only thing that helps is sitting on the John like you said !! Crazy! It was Fate that I saw you’re video!!💜💜Thank you so much!!
Love 2 Maggie Zak and furkids. Hope you get better soon. All the best.
Wonderful video about real issues we face and bounce back from on a daily basis. You do make me smile Maggie with your happy attitude and it's infectious ❤.
My phantom rectum I decided to rid of once and for all a few days post operative, and asked my body and specifically my rectum to live out what it wanted to say one night whilst I was sleeping and on meds post operative. It was a night of very crazy dreams whilst the nerve endings gave out their phantom messages, and was happy from then on in, in being silent. That worked for me anyway. Many different ways of dealing with such like, and I can fully appreciate the squatting on loo stance works too. Brilliant.
Keep it up! About not eating and iron. You know your body and are listening to it. Glad your new gi doc is in sync with you.
I have heard about phantom pain regarding a removed limb, I never thought that I would apply to other surgical results.
I’ve had a few surgeries and I get phantom feelings. It’s a very strange feeling.
Hello Maggie. I just wanted to say that UC definitely made me want to avoid food. I found that about twenty minutes after eating I would feel tense and my colon would start to gurgle and rumble, I also worried that I would suddenly need the bathroom. This would continue for some time and when my digestive system finally relaxed it was time to eat again! Thankfully I have been in remission for a long time now so this is no longer a problem but I completely understand how you feel about food sometimes.
Also I can't be sure but I think that tea can reduce the body's ability to absorb iron so it is best not to take iron supplements within half an hour of drinking tea. I suggest you do some research on this as it may only be a problem with black tea.
Take care and sending best wishes from the UK.
Iron will help your energy level Glad your taking Vitron C works well for me. Sometimes I change out to “Country life Easy Iron “
Best to you always ❤️
Maggie - have you considered some of your symptoms you describe could be pudendal neuralgia from so many surgeries ? Do some reading on it, bc there are blocks they can do that really help if so .
Hi there, I have an old dishwasher too. I used dishwasher cleaner and it fixed it… give it a try. I hope you are feeling better and better!
I get phantom rectum pain every so often too. It does not feel good at all. It's so interesting how we both tend to get it around our periods. I sit on the toilet too! "Pushing" seems to help relieve the spasms. I hope you're feeling better now.
I also struggle with keeping food. Try eating your normal meal but in a longer time frame. Kind of like “snack” on it. I eat a meal in sections basically over a span of 3-4 hours instead of in one sitting and it makes a huge difference. Annoying but works for me.
Sounds like you are going in the right direction. Really hard to pinpoint what is or isn't working at times with so many health conditions. I go through the same thing. Also not wanting to take insulin at times (just like not wanting to eat at times) because it is going to make me too low or the food too high. It is crazy. I do not have IBD but IBS. I used to have the fun symptoms you mentioned almost everyday. No doc could diagnose me. I am a lot older and it has calmed down a lot. Some of it was due to stress and high pressure jobs. Grateful I no longer have that stressor any more. On disability due to autonomic nerve damage.. Never know when I will wake up and be dizzy most of the day or when I am getting dehydrated and also I don't sweat. Just mentioning. The opposite of phantom pain. Not recognizing nerve signals because they aren't happening. One day at a time I am doing better. Bless you Maggie. Your attitude and matter of fact way of presenting what you go through really helps me. I have had my main chronic condition T1 diabetes since I was 17. It caused the autonomic dysfunction after having it for 40 years. During the pandamic I started listening to you. I was told once since I have had flare ups of diverticulitis that I could have to have an ostomy soon. However, that was 7 years ago my doc told me that and I haven't had a flare up since. Not sure what I did different, but listening to you I think if I had to have one I would not nearly be as horrified as I used to be about it :) Thanks for listening.
I’ve got IBD and in August of this year, I had 9” of my colon removed due to a stricture and mass of diseased colon tissue. No ostomy! It took me from Nov. 2019 until this August to be diagnosed! Lame G.I. Doctor. Fired all my doctors, got all new. I am having an inner-stim surgically placed to help my incontinence, both bladder and rectum. They found a lot of Diverticulitis during the surgery. It’s been a long and hard road. No ostomy but I worry if this issue will plague me for the rest of my life! My pelvic floor is horrible! Most days I am weak and tired! Who knows!
It’s great to see you back! Hope you continue to feel better.
I have just come out of hospital blockages again. Thank God for NG tube. Needed fluid. One week. But I feel better today. Keep strong guy's. Xoxoxoxo
We replaced our dishwasher 2 years ago now, after it started smoking. It's so nice having a working dishwasher.
Sorry Maggie that really sucks.
I have spina bifida occulta, unfortunately the form that caused issues and had a tethered spinal cord which I had surgery on a few years ago.
I have issues ranging from neurogenic bladder (retention), nerve damage, neurogenic bowel and endometriosis.
You make a great point about the pelvic floor, and everything in that area is so close that one thing affects another affects another...
Can make it very difficult at times to figure what causes what and what is a side effect...
All the best for your future health!
Glad you are looking and seem to be feeling better! ❤️🙏
Praying for you beautiful stay strong 💜
Thankyou and lots of love.
I have a rectal stump, nocolon and the spasms are extreme. I do have discharge at times, once it harde Ed and had to have this golf ball sized hardened mucous manually removed during a colonoscopy. Helped big-time. Now have a fistula from rectal stamp to vagina...ugh..discharge from the vagina has stopped so hopefully fistula is healing.
This is sooooo frustrating Maggie totally relate 💜 I have problems sleeping too I don't sleep all night some nights I get out of bed and do something else hope you feel better soon Maggie💜
I kept meaning to tell you that I bought a vibrating heating pad on Amazon and it's a life changer. It helps the air vibrate up or out and you can use it with or without heat. I would have killed for this after my surgery. I hope it helps you and others.
Maggie I understand your relationship with food. I have an ileostomy and I am not absorbing a lot. I also am getting dehydrated. So my doctor's say eat more and drink more. But if I drink too much I don't have room for food. When I eat I don't have a lot of room for drinking. I feel so so tired and sick and just want to eat and drink what I can. Not always having to force food or drink. So I get it. So sad that you have to go through this. Big hugs and many blessings to you
Yes! It tricks me in the middle of the night, I still get up and run to the bathroom.
The struggle with food mentioned around 12 minutes in is essentially my entire life, no one gets how eating more and what you eat simply doesn’t matter when your GI doesn’t work. I’m 35 and have been belching around the clock/suffering from constant indigestion since I was 15, No GI specialist or doctor has really figured out why or diagnosed a root cause. Physical activity makes me belch, indigestion/food makes me belch, even while doing nothing air builds up all the time and I have to belch, it just never ends. I haven’t been able to have any stability in my life whatsoever socially or with work. I’ve thought about getting rid of the colon a bunch of times but never seem to have it as an option with my doctors. I was around 130 lbs at 15 and been around 110 ever since, doesn't matter how much or what I eat.
Just goes to show you how in the dark the GI specialist are.
See if you can get into a cardiologist. Could be heart related. Good luck.
@@jenniferaddison3829
Thanks, I'm looking into it now, I never imagined a correlation between the 2.
Consider small intestine bacterial overgrowth.
@@LeyahJo
I've done all I can in regards to analyzing the small intestine, which always seems to be the trickiest area for doctors.
It actually makes sense that this happens usually on your period. Your body releases prostaglandin so the uterus will contract, but this can also lead to cramping and spasming in other areas too. I get pretty regular muscle spasms, but they definitely increase on my period, there are also many people (who still have rectums) that describe a lightning, shooting pain in their rectum during that time as well. I know it's phantom pain, so that might work a bit differently, but maybe it's caused by spasms somewhere in your pelvic floor? I think it's awesome that your openly sharing you experiences, younger you and current you should be proud💜
Brave of her to talk about these issues, I don't know if there's anyone else dealing with similar issues talking about it in this way, probably helps that she's a nurse. Anyway her videos are so informative.
I just said this too! I couldn’t remember the name of the hormone though. I learned about it when I was in labor because of an induction method my midwife recommended.
I completely agree with you Maggie, I also never had a good relationship with food and lately even more so.
It feels useless to eat and few minutes later everything is just gushing out, was placed on. loparemide, but do not want to take it every day.
All of the best Maggie, hugs to you, Zak and your furbabies.
😍❤️❤️❤️❤️
I found the information about the impact on the pelvic floor so informative; thank you. I know what to do now. I think I have neglected this area. Your looking better. Love to Zac. Take care. UK hugs coming over the airwaves.
You amaze me with your frank presentation of a topic that would make most people squirm. This may be an off colour comment, but the, "Phantom Menace" sounds like a B horror movie. You're great Maggie.
Did you ever think of a warm bath instead of sitting on the toilet? Maybe the warm water might be better than a heating pad simply because of the wet heat. I know you can swim so a bath might be o.k., at least a sitz bath. Maybe it would relax the whole area? It's just a thought and might work. It's like pain in a removed limb. If you can divert the signal to the brain it might diminish sooner. You are probably right about the pelvic floor exercises.
Gee, I hope you feel better. You have had a lot of hassle lately and you deserve a long break.
I was having issues with dehydration all the time even thou I drank sufficient amounts of fluid.
This doctor at emergency told me to put a pinch of sea salt in my water, amazingly enough it's been helping.
Keep on being you Maggie, I'm sorry your not feeling the best.
What about using a doughnut pillow (like they give you when you break your tailbone)? The concept of sitting on the toilet without having to constantly get up.
Hey Maggie Don here I know what you mean by animal problems I don’t have a bladder but sometime I thought I have to go to the bathroom to tell Zach hi for me I’m glad he’s with you
Hi Don! Read your comment out loud for Zak and he says "Hi Don! Doing well and happy to be with her too!" :)
Hi Maggie , I been having health problems. I kniw about rectum spasms. Horrible pain. I usually sit in warm water. I use a heating pad. I take muscle relaxers. Yes I cry. I feel for you. Hope your sinis infection gets better soon . I just got over one and it took lot of antibiotics to get rid of it.
Thank you for sharing your story with us
have you thought about TPM
liquid nourishment ?
is that an option for you …
maybe to supplement your low food
intake and it may add more weight …?
just a thought …
hope you feel better Maggie …
thanks for sharing …
Stay Strong ❤❤
Hey Maggie
Long time no talk...but I have been following you !!!
Fathom rectum yes it exist...I get it when I am bloated...sit on toilet and it's gone...lol I think I will pass gas and nothing happens!!! I have been so tired lately and guess what my ferritin is low...so another iv off iron now!!!
Even vitamins don't digest in my small colon!!!
Take care you sweet person you!!!
Hope that you continue to feel better…❤❤
Hi Maggie, since you mentioned your phantom rectum acts up around your period, that actually makes sense...the hormone that stimulates your uterus to cramp also stimulates muscles in the "neighbourhood" (that's why period diarrhea is a thing). I know you don't have the colon, but it's possible either your surrounding muscles or your brain is affected by the hormone.
Also, glad the iron is helping and not harming! Wrecked my stomach on iron salts until I discovered a plant-based iron I could tolerate, which I could talk long term (Ferrous Bisglycinate...Webber Naturals makes a really affordable one that also has vit c, folate and B12).
When you run out of that kind, maybe try megafood blood builder. It was great for me and didn’t cause stomach upset unless I didn’t eat with it.
Your a amazing human being ❤
As for the iron supplements, I’ve heard they can be notorious for causing constipation, so maybe that for you is becoming beneficial considering you’re having issues with loose output 🤔
Hello and I have had the stomach issue were I feel much better when I don't eat as well .I understand that you need to eat to stay healthy and alive but it's a real battle as with my chron's I can't have dairy or wheat as my body shuts down and I am sick for a week or so I don't have a bag but I know the feeling you get .like you said you feel offal when you eat and it just doesn't stay with you .I hope you feel better soon and get on the right track for you !!! Thank you for sharing and take care. Rest if need to ....
Totally off subject, but your pants are SO CUTE! Also happy that symptoms are looking up 😊
Thanks for posting and best wishes to you Maggie
Sorry that’s frustrating! I got pelvic floor therapy because I was sometimes getting rectal spasms after orgasim talk about frustrating! I should start doing the exercises again too!
I have wondered if you had phantom colon,so now I know. Anyway,it sounds as if you have turned a corner and I look forward to the next video.
Congrats 82k subscribers
Hoping for more improvements. I used spinach iron from a national health food store. That's all it was and called. You are a nurse, so you already know B12 helps absorb iron and VitD.
My D level was rock bottom and seemed to promote more absorption issues and GI blues.
Learned I should talk to someone about that dialator. There are beads I tried that actually helped inserting an hour every other day. Not comfortable though.
Take care of yourself.
I’m so sorry your body is so difficult to live in. I wish l could hug you when you’re having a bad time. Have you tried acupuncture? Not the local person, but an elderly Chinese specialist? It sounds like your whole system needs help. Maybe you could drink Athletic Greens and give up a couple of meals a day? Your trials and reporting them is your life’s purpose. You deserve so much respect and admiration. Love and healing hugs from Australia.🌈🐨🦋💕
Phantom bowel pain. That sounds painful. I take anti-gas med thats otc. I'm super sick so I know how you feel. My heart goes out to you and I will pray for you 🙏 ❤
Let us know how the barn is going.
You always look well, glad you're coping, think it's a common thing to get.. must be awful.. well done 👏
I actually am a rectal cancer pt w/out a rectum. While undergoing chemotherapy I had an ileostomy. I actually have phantom pain from where I had the ostomy have since had an ostomy reversal. I also experience rectal spasms and there is medication you can take. Check with your GI…Hyoscyamine. Worth an ask 😊
I had colorectal cancer. I have an ostomy forever. I have constant pain in colon and rectum. I leak from rectum and stoma. Most food goes through me quickly. Doctors don't have any answers. Can you recommend any medicines over the counter and prescriptions for this problem? Thank you.
Yes that drug you mentioned really helps ! I use it and it makes a big difference with the pain of spasms
The weather has been so warm here in NY that my sinuses are also acting up. I have a headache on 1 side today that just won’t go away! Ughh
The topic of food and how eating more doesn't help/do anything beneficial.
I don't know if anyone already mentioned it and/or you have already tried, but could those liquid meals / powder meals work for you? The "meal replacement powder" thing, I can't remember any specific brand available in the U.S. 🙈 Just thinking if those nutrients might be easier for your GI to process and absorb, so you would be able to have the necessary vitamins, minerals etc. for your body to function.
Either way, I hope you'll feel better soon and start getting some positive results now that you have a new GI doctor and they seem to be good (based on your previous video). ❤
I have a history of painful rectal spasms that are connected to a weak pelvic floor (which is also connected to overactive bladder issues). Mine were caused by sexual activity, bowel movements and menstruating. I’d be curled up in a ball of pain, freaking my husband out. I’m better now, perhaps due to being in menopause?? Who knows) and yes…pelvic floor PT is amazing! But alas, I need to go back for the bladder stuff.
I have started my pelvic floor therapy jerany
Feel better.
Hey Maggie 😊 I have gut issues. I recently found that a UA-camr I have just started following has a second channel from years ago that outlines her struggles with gut issues. Well I have watched her journey and decided to order, through her link, the product that has helped her the most. I am sure you already know about this product, but I have to say that it has helped me sooooo much! Her name is Jeanne Martin and her old channel name is “A Gut Feeling” I bought the chews to begin with to see if it might help my sick gut. I started low and slow, and I have to say that after 2 weeks I do see improvement. I am just letting my body get use to the chews. Jeannine says in one of her videos to start low and slow. The company that she chose even sent me more information in the mail after ordering from Jeannine 😮🙌🏻👏🏻🎇
I had a TAC w/IRA. I starting having them out of the blue about 3 months post-op-- they were so intense and painful. Girl, I showed up at my surgeon's office like nah this ain't gonna work. He prescribed me 540 Levsin. 🤣
What's bad is when you aren't getting the "I gotta go" sensations and you put too much emphasis on one word, cough, sneeze etc and well.. you know 😳 Granted, that may just be me-- I have nerve damage which caused all of my GI issues.
"I have a weird relationship with food." The history of my life since I was teenager. I keep changing my diet to control my GI issues and I hate it. I am always craving food that I cannot eat.
People dont get it when u choose "not eating but feeling ok", over "eating like everyone else but feeling like nobody can understand"... i can only eat once a day and once i eat, the day is over, if u get what i mean 🤐.
* i hope u feel better soon sweetie
❣
New to your site.
Before my hysterectomy little over 9 years ago, I’d often have my IBS flare up big time when having period cramps because my cramping uterus would trigger my intestines. While you don’t have your colon and rectum, maybe there’s something left in there related to that area that your uterus could be triggering? Any muscles or nerves related to the butt area that is left behind when you have the surgery? Just me thinking out loud here
It’s the hormone that causes cramping
My situation is somewhat different to yours but i have been getting iron infusions as it is supposed to reduce the chances of constipation
ohh you to mags mine was nuts last night it sucks
Have you tried nutritional shakes like Ensure?
"The Old Fashioned Way" by Phantom Rectum
_Be Comfortable Tonight_ (2022)
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Thank you for the helpful tip ! I had phantom rectum problems,also. I am not sure how many times. I have an ileostomy ,also. I also had blockage. I didn’t know it could happen,since I have a stoma! I had surgery in2001 ! I am
75yo! I may have a portion of rectum. Not sure.
I agree that eating should be fun. Dr Zach Bush says we should not label ourselves as vegetarian or carnivore or anything else and that we should eat what we enjoy for eating is not just about nutrition it is also about the experience.
I really like that. I think people get hung up on the label sometimes!
I have recently been diagnosed with IBD. It’s comforting to know what it is but seems like this illness is so unique to each individual. I’ve frequently suffered with dry mouth and often get oral thrush - am I the only one who experiences this? Unsure if linked to IBD or not.
QUESTION. I don’t have chrons but I eat and a few minutes later I have explosive diarrhea no matter what I eat. If I have to leave home say at 2pm and don’t get home till 5 or so I won’t eat all day till I get home. I see a GI Dr he thought if I had my gallbladder removed it might help with the nausea that I have all day most days, it helped some but not much. Imodium use to help but now 2 only helps for 3-4 hours. Can you suggest any questions I should as my GI? I’m 72 and this has been going on for over 10 years
Rx Lomotil is stronger than Imodium to slow and thicken output.
I have an ileostomy and most of my colon and my rectum. I never have any discharge. I know that sounds unusual, but that’s just how it is in my case. What I do have, though, are rectal spasms - quite often, actually. I find them very painful and I still go to the toilet and press, even though nothing will come out. I just can’t help it. Any tips?
The same thing as phantom limb pain? Our brains are probably hardwired to our gut ... And how does one find a pelvic floor speed ialist?
Try floradix or florvital ! Great for anemia!
Maggie, do u have a retro tilted uterus? Mine is and I get a lot of rectal spasms too around ovulation and menstruation. I also have no colon w ileostomy (but I do have a rectum still).
What does that mean, i just went to the hospital because I thought I felt a mass insise my rectum, turns out it is my uterus one can feel through my rectum, and the doctor that did the examination (the one like coloskopy but just in the rectal area) and feeling with his fingers said it is was sitting tilted(he used the Danish word forskudt)
And now I am soo confused
I do not have colostomy, I have all my organs, but have had some strange sensation from my bladder and rectum lately
I have asked for a gynaecologist appointment
Sorry for asking, but I thought maybe you guys could make me wiser
Oh god Ghost butt as we call it , it’s crazy . Why ? Why , after all we have been through do we now get ghost butt !
My iv fluids always make me tired!! No matter what I do. I’m good after, for several days.
Hello Maggie I am a 54 year old man and I had the last piece of colon and rectum removed in 2018 and I get cramping and lots of phantom pain which can drive you crazy
Phantom rectal spasms 100% are real. Heating pad between my legs is my first attempt. If I still have the pain I hop into a extra hot bath in a squatting position for as long as I need. I also have someone assist in acupressure on my sacrum. I do as much possible w/out meds but a cyclobenzaprine really takes my "broken butt" pain away. As far as not wanting to eat it's totally understandable. I can go for yrs at a time only consuming 1 Spiru-tein shake w/rice milk and 1/2 Pedialyte, and water PRN a day.......nothing else. Absorption feels and looks nonexistent when my bag looks just like what I ate. I mean how much nutrition am I getting if the food comes out looking the same. Best of luck.
I am a female so I can relate to the period stuff. Asher is actually my grandson. :)
When I have spasms I take Bentyl. It helps me.
I have really bad phantom rectum. I used to have a perianal fistula with a seton band for 9-10 years. Had so many complications and so many operations. The seton kept the fistula open so it could drain but also the knot in the band would block the drainage!👍🏼 So now I have an ileostomy and no “assholeo”, my phantom rectum still feels unbelievably painful. I have to have Codeine or morphine daily to stop the horrible feeling😓
I also had a seton placed 1.5 month ago, very painful post surgery time( is it possible to live with seton for 9 years without big issues? please tell a bit more about your experience, doctors do not provide any forecasts(
@@igorkarasik6273 Sorry you’re feeling the pain too! Basically I had to have multiple operations through the 9-10 years. Sometimes the band snapped, other times the band knot would slide into the fistula, blocking the drainage causing another abscess to form, making me need more surgery. I had granulation around the fistula too, so I had to go in hospital daily to try and burn it with silver nitrate, hurt like hell! In the end it all fucked up and the fistula perforated my rectum twice, causing faeces to go throw the fistulas rather than my asshole. Was fucking horrible! The surgeons were absolutely useless which didn’t help either. So yeah, a seton isn’t the best, but it’s pretty much the only option sadly. If you wanna know anything let me know and I’ll try help out!👍🏼
@@Bert3HD thank you for your reply. i totally understand how painful it was for you(( fistula was also crohn related? it was simple or high complex one? i did not know i had crohns until 35...passed 3 surgeries this year. if possible can you give me some tips how to deal with it
@@igorkarasik6273 Mine was in the superficial area, think that’s high? I’m afraid I literally have no more tips sadly. Only thing I done was made sure to do was keep the drainage clean and use a dressing after. Hope I helped in some way!🙂
@@Bert3HD thank you! i just wanted to ask what did you try to heal fistula instead of seton? any meds ? or seton is just helping to postpone time of rectum removal? was it possible to travel with seton, do sports? sorry, many questions, but i am in a panic after diagnosis(