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Seeing a New GI Doctor | Let's Talk IBD
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- Опубліковано 3 лис 2022
- I finally got to see a new GI doctor (yay for not waiting until March of 2023)!
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Thank you for talking about how emotional it is. You said you don't know why you get choked but its probably a bit of medical trauma. Those of us with chronic issues can get gaslit by doctors, we can have really negative experiences and when you have a new doctor you have to be vulnerable and see if they will even believe you, let alone approach the doctor patient relationship respectfully, actually help you and not have a mindset of unbalanced power dynamic in their favor.
It isn't talked about enough and It was refreshing seeing others talk about the anxiety that comes with trying to just get decent treatment
New doctors are literally the bane of my existence. There's been so many times where I get dismissed or accused of faking lab valued and fully tested and confirmed conditions. Eeventually I find myself asking if I'm imagining the things I'm experiencing... even though I unambiguously am and can be demonstrated clearly. Medical trauma is crippling
Frankie, just had a spell in hospital, in the UK. My surgeon dismissed everything I told him, whereas before he seemed to understand. He refused the operation I need, an Ileostomy. I have a slow bowel and my anal nerves have failed. I forcibly evacuate with anal medicine, which when I was eating, tore my pelvis apart, leaving me disabled.
Hi Maggie, as I listened to your symptoms, my intuition told me that your sinus infections are due to mold in your house. I understand that Zack has sinus issues too. Have your house checked for mold-it's very common in old homes, and they can do mold remediation to get rid of it. Not good for pets either. So glad you got a good doc. Sending you healing vibes!
YES! I have an ostomy and had to have 3 IV drips after every chemo treatment and they made me so tired! I thought I was supposed to be energized by them but no, I always had to have a nap after every IV drip. I'm happy to report that I finished my chemo two weeks ago so I no longer have to go for IV drips!
Marshmallows. Whenever my daughter (also Maggie) wants to slow down her output, she eats a couple marshmallows. Our Home Health nurse taught her that.
I’m glad this doctor went well. Change is hard with doctors especially when your health is complex.
It’s funny you talking about getting chocked up. I have no issues with how complex my health has been, I was diagnosed with one of my most server issues at 28-weeks gestation, first surgery was 6hrs old, it’s the only life I know. I’m fine with my life. I’m 27, but even in my early teens I also get choked up at some point when telling my story and I don’t know why.
I feel like GI issues are so hard to deal with. I have Gastroparesis since I was young, I was born without an esophagus (which gastroparesis also came with that but got worse over time) my esophagus was made in 9 major surgeries as a baby and toddler and more as an adult. But I don’t have the sphincter at the top of my stomach and I reflux constantly and it spills into my lungs regularly. Even though my stomach is drained continuously. Every time I get aspiration pneumonia my GI system completely shuts down my stomach is already shut down but my intestines stop working, I can’t run my formula , get in hydration or take meds through my j-tube it turns into a very big deal every time. Thankfully I have a port but yeah GI system so hard to deal with
Maggie, wishing you all the best. Sending hugs.
Maggie I was vegeterian for years but like yourself after a lot of distress had to strart eating meat afain when I got my ileostoly 4 yearrs ago, i did not want to change my diet but to have any qualiity of life i did and have never looked back. keep doing what is best for YOU! XXX
You have so much going on and yet, still the sunny ☀️ attitude and smile.😊 so strong and positive! Smiles are definitely contagious. Thanks for making me smile and feel inspired. Fall must be so gorgeous on your farm. 🍂🍁🌾🪵🐿
I suffered from Crohn disease but my treatment with Remicade is working well. You are courageous. Bravo!
Glad you liked your new doctor ! Feel better soon ❤️
With the chicken, it may be dark meat vs light meat. I have IBS. I know they're not the same thing by a long shot, but I understand the frustration with unpredictability. Chicken breast can cause issues sometimes while it is perfectly fine at other times. I never have issues with dark meat. 🤷♀️
Glad to see you're doing better & congrats on the new GI doctor!!
Hope you get some answers and treatment that helps you! I was able to get a diagnosis for SIBO through Penn Medicine (this was about 10 yrs ago now) using a "breath test". I had to be treated a few times with heavy duty rounds of antibiotics but eventually that resolved it.
So glad your new doctor appt went well! I just lost the most amazing GI doc I've ever had because she changed career paths and I've been feeling devastated. She was the first one who really took me seriously and discovered a ton of active disease that was missed by other docs. Idk what will happen without her, but this video gives me hope I needed. I'm also glad to know I'm not the only one who gets really anxious and emotional about a new doctor appointment. Mine's set for March 2023 and I'm already planning what I need to say 😅
Feel better Maggie! I'm glad you like your new doctor.
So glad that your appointment went well. Hope that you continue to feel better. ❤
Just to answer your question, chicken thighs and red meat are far more fattening than chicken breast and fish-perhaps at this time it seems to suit your needs better - so glad everything seems to be heading in the right direction 😊 much love Southampton, England x
I've tried watching this video several times today but due to tornadoes and bad storms and power outages, I'm finally getting to watch it. I use boneless skinless chicken thighs to make honey garlic chicken. It is so good over rice. I'm glad the doctors visit went well. I hope you feel better soon and are back to your normal. Take care and Hi Zak.
Ooh that sounds delicious is it from a cookbook and if it is which one?
So good to hear some positive news for you Maggie - you really have had so much going on!
Glad to hear that you're feeling better You certainly look better it's been a long road for you keep trucking
Hope you feel better soon 🙏 ..... Glad you liked your new doctor 🙌 .... God Bless 💗
You look like you feel much better. I’m so glad for that, in my prayers that it’s all better from here.
You are a inspiration ! Hope things get back to normal soon ! Take care!
About the IV fluids causing fatigue, maybe it is from a temporary fluid or sodium or glucose overload in your brain that is causing it. Just a thought. Good to see you staying strong during this ordeal. I hope the new doctor takes good care of you!
That's great that your new GI Dr appt went so well and they were listening what you were saying and including your input in what steps to take going forward. Sending prayers that things will start getting better and you'll feel healthier again ✨️ 🙏 💛
Iv fluid fatigue happens to me too! Its an overload to your body and its just trying to process everything, much more common then you think.
So glad you are feeling better. It really is better when you are hydrated. It sounds like you will really do better by getting your iron levels up. That can really make a big difference in how you are feeling.
Really glad to hear your visit went well and they listened. That is huge. My GI retired as well. This gives me hope that my upcoming appt could go ok. Hope you feel better soon.
Hello Maggie and thank you for the update. I believe the stomach has a harder time digesting meat so perhaps that is slowing your output.
I am pleased that you have found a doctor you have confidence in and I wish you well for the future. Take care and sending hugs from the UK.
I was just wondering if it might be the other way around (in her case) that her body might have difficulties digesting vegetables and they just go out.
Praying for you girl
Thanks for the update!
I'm glad you have a Doctor willing to help.
I mentioned before in my case it was the small intestine. The Doc treated as a last resort and it worked after the fourteen round of very expensive horse pills.
My initial reaction was extremely painful but it improved after the first week.
I hope they can narrow it down. I dehydrated because of my out put. It stressed the kidneys but wasn't the cause in my situation.
Wishing the best outcome.
I give myself IV fluids at home, and it makes me SO tired afterwards too! I almost always need to lie down during and after.
Sending you many prayers dear Maggie❤ you are going through so much. Is there any way for someone to take you for iv fluuds?
I am so happy for you that you now have a GI doctor and were able to have an appointment sooner. I really enjoy your watching videos even though I don't have IBD. I do have a request, Is it possible to make a video of the fall scenery, I thin that would be so nice to see. Thanks and Take Care.
Glad you are feeling better. You are in my prayers.
Seafood and all vegetables are making my out put watery. The Dr.s told me when I had this done vegetables would not be my friend. I miss my salads and raw veggies. The gas is horrible I have to put ez vents on my bags or my seals will break it's pretty crappy lol
I felt that fatigue with iv fluids when I did it at the medical day unit at the hospital then when I switched to doing them at home it changed. I don’t get that same feeling and I have found that I do better running them overnight. My body absorbs the fluids better when I can run it slower. I have a central line so makes it easier to do myself at home.
They have great grass fed grass finished Ground Beef and grass fed Ribeye at conventional beef prices at Aldi. The carnivore diet officianado's say chicken thighs are better than chicken breasts since breasts don't have enough fat and that meat from ruminants is best. Many with diet issues use beef, butter, bacon and eggs exclusively and swear by it but that comes with it's own issues. Glad you turned back to the red meat which is full of Iron and B vitamins as the world is turning to Crickets.
Tell Zack I love the cow hat, good morning and happy belated birthday.
Howdy Maggy. It sounds like you got a good GI Doc. I agree with you as to eating with GI stuff...You gotta do what you gotta do. I have IBS and do a mix of HFLC and Low FODMAP...Every now and then I get some flack for the way I eat,but like you,I take as good care of myself as I can and if folks get bent outta shape as a result,it ain't my problem.
Would you do a vlog on SIBO and what the testing was like for you?
So glad your appointment with the new doctor went well! I've been having a ton of ileostomy/stomach issues this year, except I have the opposite problem to yours - mine has significantly slowed down and we can't figure out why. Saw a new GI and they believe it could be SIBO too! I've started the meds, but no relief yet. I hope you get some answers and relief soon, Maggie! It's so frustrating not understanding and having to go through all this trial and error, but I keep reminding myself to take it day by day or even hour by hour ❤
I hope your new meds start working soon
@@sakaimae Thank you so much!
Hi Maggie, you are certainly going through the wars. I enjoy your videos and I wish you the best. Tomorrow I will be going to have surgery from colostomy to ileostomy any advice on how to deal with the change. Thank you. Neil..
I’ve had SIBO for quite a few years. Avocado is a no no. Get the test done, extremely easy and you can do it at home. Good luck!
I do daily fluids at home and have issues with body temperature. See if they have fluids warmer or bring a warm blanket or even hand warmers or all the above
Tired after may be from just sitting still for the duration of the infusion. Maybe get up and take a short walk a couple of times during your infusion?
i have read that vitamin c help a lot concerning absorption of iron.
magnesium too
Glad your doctor is taking your concerns seriously and actively looking for an answer. I hope you figure out the cause and that it's something simple to manage.
I had a 1/2 hour infusion within this year. Going in I felt tired, maybe slightly nervous. When I left, I was energized and quite alert. Maybe I was just happy it went smoothly?
Enjoy watching what u film share
Love your nail polish!! Would really like to know the brand & color name. Thanks
Potato's.. carrots.. are the only thing that makes my output thicker.. otherwise its always thin liquid.. either transparent or brown x
SIBO is always always always secondary to a 1°/another problem. Don’t let them BS you into thinking that is the problem.
I had mentioned SIBO to you previously 🙂 I was diagnosed with this earlier this year after decades of dealing with “IBS.” They think in retrospect my symptoms were largely from SIBO. I will probably always have some degree of GI symptoms, because I still have some, but I am much improved following antibiotic treatment and some dietary changes. I also had the same issue with very low iron but low normal hemoglobin and hematocrit levels that also were largely ignored by my doctors. I would often be deferred from donating blood even though I’m post menopausal. My hemoglobin levels would be high 11’s-low 12’s. This also went on for years. Diagnosis by breath test is super easy and non invasive. So that’s my unsolicited medical input. Good luck! Answers are nice. Signed, Dr. Carol 😆
She was on the right abx for SIBO with her sinus infections and other infections earlier this year. If it was SIBO, it would've improved with such abx use. She would also likely have a sulfuric or rotten trash smell to her output.
IBS is related to SIBO. Irritable bowel *syndrome* inidicates a collection of symptoms; not a disease itself. IBD, not IBS, aka inflammatory bowel disease like crohns and US, would typically lead to SIBO, not vice versa.
Your body always gets sinus infections and mine always gives me throat infections!
Hope you get some answers soon!!
I love my GI doctor. He’s younger than me so he won’t be retiring any time soon.
Just a thought, the acne could be because you changed your diet up a bit.
I saw my new GI this week as well. I think I like her🤔. She ordered a breath test, which I did today. That laculos stuff really upset my stomach and I was bloated all day. I also had to do a stool study to check my pancreatic levels and such. I've been off pancreatic enzymes since January. She seemed concerned, somewhat, about the leakage I have. We'll see how things pan out.
I use a powdered iron supplement-tastes awful, but I can actually absorb it with my ileostomy! Highly recommend that. :)
This dr seems nice helpful
The Zoloft thought was a good one.
Maybe bc when your body is stressed bc of the dehydration and you get IV fluids your fight or flight response goes down so you get tired? Idk just a thought!
Lolll relatable dogs barking as filming
Did your Dr’s ever suggest fiber pills like fibercon when I had watery output that’s what they gave me. I have only had my ileostomy for 2 years. Was allergic to the adhesive from the first pouches they gave me and my skin was so sore and weepy couldn’t keep them on. Have since changed brands and they are much better…fighting a sore under it right now with stomahesive.
I wonder if the post fluid fatigue might be tied to diluting out electrolytes or sugars? Are they using normal saline? If so maybe ask about switching all or part of the infusion to Lactated Ringers or even Lactated Ringers with Dextrose?
Chicken thighs (dark meat) are higher in fat. Better for you, in my world. Red meat is the best source of heme iron if you want to get your iron stores up. BTW, avocado is a very high-fiber fruit. Could be a problem for sure if fiber is a problem. Good luck finding exactly the right dietary balance for you! 💕
Chicken thighs are the dark meat of the chicken and that and the legs are more juicy and tender. White meat as in the breast and basically the rest of chicken is dryer meat and has a tendency to be stringy and harder to digest. We eat a lot of chicken and we both prefer dark meat, so that works out great for us. It's also considerably cheaper than breast meat. I love chicken and dumplings and I always use the dark meat for that, it's a richer flavor and just makes it taste better to me. They have a 5 pound bag of leg quarters that is cheaper and has the bone in and that's what I typically get and package it myself for the freezer, I have to cut out the part of spine and the nasty tail when I package it for the freezer, but if I'm going to boil it and use the broth I leave them whole cause it makes a better broth and has a little more fat in it that gives it a good flavor. My Grandma used to add a stick of butter to her dumpling broth. So good! I can't make her dumplings though, mine turn out like shoe leather, they're so tough, so I buy them from the freezer section. I haven't had much luck with drop dumplings, they're doughy in the middle and that's not good either. The only meat I have trouble with is if it's dry. That makes me pancake and takes forever for it to pass through.
Good to hear about the new Doctor hope you feel good soon tell Zak love the hat
If you added the meat at the same time as the iron suppliment how do you know which one might be slowing your output?
Hi magie its lynda from NEWZEALAND I ASO HAVE CROANS AND HAVE AN ILLI OSTOMY BAG THANKS FOR SHAREING YOUR JOURNRY WITH ME I APORECIATE YOU VERY MUCH FROM LYNDA Hrt
I had SIBO for a year and a half and it was terrible! Even if you come back negative for methane or hydrogen, ask for the antibiotics!!! I had sulfur type and there is no test that exists for that type. After antibiotic tx, yogurt and probiotics. Pure therapro rx probiotics are what my dr recommended since they are the only ones lab tested
I also had weird spasms and pain with SIBO. Mine was stabbing in my upper right and left (gallbladder was fine). I came to the conclusion that my small intestines were so bloated that they were being compressed by my ribs.
Loll smiling u r enjoying looking 16
Avocado 🥑 makes me deathly ill 🤢 I found that out 40 years ago…a few years back they put some in a burrito 🌯 and I was unaware until I had gotten a big enough chunk, spit it out, but had already ingested some…was sick for two days. So it doesn’t surprise me…I have IBD…curious if others have trouble with it also 🤔 I am happy you got a GI doctor you like 👍 huge difference when you have security in a doctor. Hope you feel better soon ❤
I don't know if you will see this. Eat steak and liver. Screw it. Eat as much as you can stand. I love watching you. I wish only the grace of God for you and Zak. You're a precious couple ❤️
Chicken thighs and red meat working better for you 100000000% makes sense - it's filled with heme iron which is the form best absorbed by the body. Chicken thighs are dark meat, dark meat = more iron.
Sorry to intrude in on your comment to Maggie...
Just wanted to mention that I too find my IRON levels were low and noware higher, as I eat the darker meat, I never liked white chicken meat I find to dry and no flavor... ♡ most of my life I didn't fair to meat at all, but when my Dr said I needed more Iron I turned to the darker meat, hope Maggie sees these comments.
Love and light
Take care
Mary
I usually nap when I do mine at home.
Yea
I went to the Carnivore Diet. Eat mostly beef, limited dairy and eggs. It helped me, a lot
I'm so scared to switch drs. I've been with mine for 10 years but we had a disagreement and I think we have differing opinions about my peristomal hernia. I'm am in a lot of pain from the hernia on the left and occluded scar tissue on the right. He won't touch it. 🤦♀️ it never ends. I have severe perianal crohns so keeping up is important. I think im going to go straight to my colorectal surgeon. Sorry word vomit.
So what was the outcome or decision about the small intestine bacteria do? Where you tested?
❤❤❤❤❤
New doctor appointments are always nerve wracking
Did you get the results of your Humira levels?
☀️
I have a loop stoma.. & I'm having problems cutting the centre of my base plate to fit around my stoma.. my stoma is a funny shape.. its not round or oval it's a kind of rounded triangle shape.. odd.. I carnt get my bags ready cut due to the shape.. please does anyone know how I can get the base plate to fit my odd shaped stoma.. I carnt do a neat cut.. at moment I have to use barrier rings to fill the gaps from not been able to cut the shape right x
I'm from the Philadelphia area and I was just diagnosed. More specifically I'm from skippack area if that helps, I'm looking for my first GI and was wondering who you go to
We used to live on Skippack Pike in Lansdale! I go to Penn :)
@LetsTalkIBD University of penn? Yea we just left schwenksville and moved to trappe. I work in lansdale. I am supposed to have a appointment at upenn next week but may be out of town and was told if I cant make that one I have to wait until april
IV anything exhausts me !!
have you heard of Dr Elisa Boden who does online life coaching for patients with IBD helping them manage their mind around their chronic disease? I thought of you.
Have you been tested for campybacter?
are you still in contact with the surgeon who did your sinus-surgery? What does he/she have to say about this?
My sister has chronic sinus infections - usually every couple of months ... and her sinus surgery didn't help at all.
God bless
Put a few chicken thighs in oven w seasoning tastes good
Happy your happy with new Doc.
As long as you eat high quality non GMO/NO ANTIBIOTIC Meat, you should be just fine.
Chicken thighs are closer in make up to red meat because its one of the most used muscles in a chicken, so if red meat seems to be helping then logic follows that chicken thigh or other “dark”chicken meat would be better than the white chicken meat like the breast
Every year I get at least 2 sinus infection 💜
I’m not 100% certain, but I think I’ve heard that red meat has more iron?? Maybe your body absorbs it through food better than supplements. 🤷🏻♀️
What’s an MRE? My brain only thinks meals ready to eat lol
Chicken thighs have more fat! They are very tender and lots of flavor!
Iv drips do that to me Maggie iron tablets too meat is the worst in the world for me but I'm vegan now and 👍 hope you feel better soon Maggie darling 😘
Chicken thighs are very tender.
Your sinus infections could be from Humira…
Oh i know this for sure red meat heals the body today maggie my neice is having her large intestines removed and will still have an ng tube jueojenum
She also has gastrapesis
Beef is slower to digest than other meat.