PART 3 | Catching up | Visit to the hospital | Gastroparesis days
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- Опубліковано 20 лис 2021
- Hey everyone,
This is part 3 of my video from last week, catching you up on just a few random things I've been up to the past couple of months! Plus a trip to the hospital to sort out some of my feeding tube issues.
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Instagram: Beths.battle_
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Email: beths.battle@outlook.com
PO BOX:
Beth Gallery
City House
131 Friargate
Preston
Lancashire
PR1 2EF
Speak soon ❤️❤️
Sorry you have had to suffer for so long. Good to hear placement will change. Will be wonderful to see you enjoying life pain free. I prayed for you. Continue to stay strong.
Thank you so much! Hope you are okay xxx
Still the same thoughts about you : What an extraordinary beautiful human being !
But, as you see, we are so much to support you, for each of us you are important; That means each one of us, will be there for you when you are feeling down, we are here for that, for you. Loves to Mister James and your fantastic Mum and you, of course
Thank you so much Alan you are always so so sweet. Hope you are doing ok!! Hope covid isn't too bad where you are again :( XX
Poor Gypsy "Beth" Rose in ur caravan! A crystal ball would be nice 4 u to be able to see the future regarding ur tube - but sounds like ur doctors r on the ball🔮sweet girl! All the Best to ur family c u soon
Are you joshing Beth? Cause there may be no worse reference than Gypsy Rose. One girl was abused by her mother and forced to lie for years. The other has actual EDS and chronic illness that affects her and those that care about her regularly. So IMO anyway. That is not a good or kind comparison at all. 😞
I completely empathise with you I’m so glad you have a care plan now because your site looks so flipping tender and sore I feel pain for you seeing it bless you, it’s been going on so long for you too!💗
I’m having tube issues too albeit different to you. I’ve been like it on and off 1.5 years..
My tube has been in the wrong place since 28/9 last tube change went badly the little motility I do have is in reverse. This meant 7 times my team pulled the peg-j tube down to my jej and it kept going back to my stomach. We’re having one more try and I’m barely getting feed or fluids if this doesn’t work it’s a jejunostomy surgery for me.
Now I’m waiting any day now for another try of peg-j placement under GA and if that doesn’t work it’s sorting out a jejunostomy surgery which I’m very anxious about.
Sending love & hugs, hoping things will start to get better for you 💗💗xxx
Oh my goodness Joanne have they still not been able to help it!? :( :( Have you any updates on this?
Praying for you that you get some relief very very soon!! xxxx
I’m dealing with the illness also it sucks im in a flare rn hoping I don’t need to go to the emergency room I don’t eat barely small bites and nauseous and horrible stomach pain and I’m really dehydrated from vomiting
Glad Yr getting new tube beaut. Hope the morphine is helping. U can put it down Yr tube, mine went down nj tube but I been in it for a years and mst aswell.
But u could start with half a dose in tube and see how u handle it and always do other have 15-30 mins later.
I'm waiting on having a peg with j extension, so I can drain and feed as I had 7 nj tubes placed withing about 9 -10 weeks plus waiting to be called for my ileostomy surgery aswell. I asked My colorectal if both could be done in same operation and he said yes but it's getting my bowel specialist available at that time so instead he said he can place it for me as he done that for many years 🤞🏻. But he don't recommend my peg-j till I have the ileostomy because of whatbi have to do every day.
Had to get surgery right now as in colorectal they have to deal with alot of cancer patients bless them.
It's only 3 years I been waiting, had my pre ops and everything back in May for the ileostomy and now will have to do it all again. Got to have a camera up though to look for a bleed as I also no have a prolapse and it's making what I have to do every night very hard for me.
Sending lots of luck Yr way, it's lovely seeing Yr vlogs again hun, wishing the the best of luck for Yr surgery and a speedy recovery 💙 x
ahhh me too, I'm just so glad I finally have a plan! I've actually had to stop taking the morphine :( It was making me feel sooooooo sick, to the point I couldn't even move because I felt so nausious. Does the morphine make you feel sick too? If it does how do you stop it?!
Oh wow thats really good news, that will be so much easier for you rather than your NJ!! - would also be amazing if they could do it in the same operation! Did they say how long you might have to wait until you can have it? so happy they are finally getting somewhere with you, praying it will be very soon!! xxx
@@bethgallery1140 oh I have always been fine with morphine hun. Dean gets dizzy and feels sick if he has it for his crohns, but a lower dose and top up with another small amount about and hour after helps that and sometimes sick meds. So Dean will have 2.5ml of morphine and he just feels a little relaxed (but I would would say have it around Yr feed time or with Yr cuppa).
Unfortunately I am on it daily for brake through pain as the mst (slow release morphine tablets) don't help all that much, but nothing helps that well as I'm sure alot with eds metabolisers things quicker and differently.
U may of already tryed a Lower dose, but if u haven't I would try it again and as I say with Yr feed. Only way I would say don't take it is if Yr sickness may be an allergy to it.
I so hope Yr surgery don't take to long and hope it all goes well and that the acid leaking and bad skin irritations go away and it's all more comfortable for u hun, u struggled long enough with this now beaut.
Well I had my pre assessment in may as I was ment to be called in but unfortunately they have had alot of cancer patients and I'm not going to say I'm more important than them, but I definitely am very desperate now as I have a few other thing but won't put them on here as its very indepth. But am always happy to talk to anyone having slow/paralysed bowel and need help with advice abouts what I blgo through and am having to have done.
He have said he wants to do the camera this side of Xmas incase any surgery is needed in the rectum when I have my ostomy surgery done, and he is going to get In touch with the books to try to expedite my operation. I just hope the peg-j can be done in the same surgery and if my bowel specialist can't fit in time wise to do it in the same surgery at least the colorectal surgery can place my peg-j aswell as he has done them loads aswell 🤞🏻. Also I can't wait to long for the feeding tube as I'm trying to keep myself as stable as I can right now as I have no tube, and omg I sure miss my tube for my meds as I could feel the benefits from them going in the tube, plus having a ileostomy can make u dehydrated and us PoTSy people can't be getting dehydrated so my tube is just as important to get ASAP aswell.
I was taking into hospital few weeks back with a suspected mini stroke, but finally been diagnosed with hypoglycemia after about 25 years of telling doctors I always get really low blood sugars, so under a specialist for that now to and my dietitian have said once my peg is in I an try a diabetic feed run slowly and hopefully we can keep my blood sugar more stable so I'm not getting better 10 and 30 lows a day. Was told it is linked to PoTS and gastroparesis..
But I have been putting weight on with all the extra calories I been needing for my blood sugars, as I can't eat meals and on liquid feeds and struggle with them badly I have to have 4 jelly babies to bring up my sugars or 200ml of Orange juice (sometimes I treat that may lows that I can't manage an ensure feed). I keep stable on around 800-900 calories a day and I can have upto 2500 with all the calories to treat my sugars. Xx xx
I hope u fine a way to help the pain and Yr skin till Yr surgery is done and it can heal up for u hun. I know my cfs been kicking my butt so badly more and more as the winter is coming in, don't know if u find yrs can be worse in winter. But Yet winter is my favourite season, I love wrapping up cosy with twinkle lights pr candles on and watching some films or some of my favourite TV show. I did notice in Yr video u have vampire diaries on 🥰🥰🥰🥰, Dean said its to soon for us to watch it again as we sen it once this year already lol. Xx
Just a thought/question. I remember wayy back when you asked your GI doctor about getting a GJ tube and they said no because they didn't want to make another hole because of your skin. There maybe more of an explanation to that but it's been so long I may have forgotten 😂. Anyway, since they have to make another hole anyway would a GJ be more beneficial to you? I know some doctors don't like you to drain and you wouldn't have to all the time but I know with just J tubes they have a tendency to leak way more. Just wondering if a GJ would be better for you long term I'd hate to see the same thing have to this J tube.
Not trying to give you unsolicited medical advice at all!! Just thinking out loud and hate seeing you have so much trouble with something that is supposed to be helping you ♥️
Hope you are doing okay! ♥️
I have asked if they would do this for me and they have said that the only thing they would consider doing for me is a seperate G and a seperate J :( I really wish they could do a GJ for me but they said that they often cause more issues than they are worth, so the better option would be to have 2 seperate ones - which is a lot of worry to me because I'm panicking that if I got this pain X2 in 2 different holes idk how I would cope lmaoo.
Thank you so much for the suggestion though I would defo have asked with you reminding me if I hadn't already.
Fingers crossed if the new one goes well, I will 100% consider getting a G too!! Hope you are ok lovely xxxx
Have you been tested for mast cell activation syndrome? Being allergic to the bumper on your tube, the reaction to morphine which is really common with mast cell.
No I’ve never actually even thought of that! Is there something that can be done to test this that you know of? I wouldn’t even know where to start! Xx
@@bethgallery1140 You have to get a tryptase level within six hours of a reaction. There are also other mast cell mediators that can be tested for such as prostiglandin D2. You can find out more information about MCAS on the NHS website or on NORD, the organization for rare diseases. It's very common with EDS and POTS. Look up the trifecta, EDS, POQS, and MCAS. Hope this helps.
Thanks so much that’s really helpful! It would be worth knowing either way! I had no idea it was common with EDS and pots! ❤️
Wait. Someone said you had a Washington shirt on in one of the clips? You’ve been to the Pacific Northwest before?😊😮
Lol Katie I wish I had... Just primark unfortunately hahaha xxxx
@@bethgallery1140 Primark is like the ultimate girl! I feel that! Besides the Seahawks. I have to say our mountains 🏔 and ocean are cold but wildly pretty. Hopefully someday you can see our home area. And someday I will see yours guys. 😊
Awh god Beth. Uve been through hell and bk. Any word on a surgery date yet? X
No date yet but I've seen my surgeon now which is a start! We are hoping very early new year xxx