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#21 Emerlyd

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Posted 25 November 2021 - 07:26 PM

IBS-C and IBS-D never consistent enough and stomach discomfort. If I eat it digests too fast or not fast enough, constant bloat.

#22 x_Samantha_x

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Posted 25 November 2021 - 07:50 PM

I am praying I won’t eventually end up with a colostomy bag. A lot of my bowel issues also are a result of long term laxative abuse when I was younger.
 

I know you have the gastroparesis but is it possible, if a coloectomy is in the future to have J-pouch surgery? I'm a J-poucher. They just took my small intestine and repurposed the lower part to act as the rectum so I can still go to the bathroom normally. I had an ileostomy for 4 months and while I coped, I never want to go back.

I was later diagnosed with Crohn's which they never would have done a J-pouch on me if they knew that because Crohn's patients are more likely to develop fistulas. . .which I DID! And that's how we found out I was misdiagnosed all along. (original dx was Ulcerative Colitis)

But I'm grateful for the misdiagnosis because I was able to get the J-pouch and now they won't touch me with a ten-foot pole unless I'm dying. I just have to sort out this tiny leak in my intestine now. Thankfully the fistula is tiny and it seems like it's slowly healing. Doctors think the biologics (Remicade/Humira) should close it right up. So I'm hopeful.

Anyway, as long as you're not a Crohn's patient maybe research J-pouches (ileo-anal anastomosis reservoir). Having a ileostomy looming over me for years and then finally getting one, I understand the dread and anxiety of it all.  It sucked. I mean, I did cope and I had it down to science in only a few weeks, but I really don't ever want to go back to that. 

Just thought I'd throw that out there. You probably already looked into that, but I figured I'd mention it just in case.


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Age: 29

Height: 5' 2.5''

HW: 124

LW: 101
CW: 107.5

GW: 105

GW2: 100

 

Dx: Nov. 2003 Severe Ulcerative Colitis. 

Medication failure. No Remission for 14.5 years.

 

3/8/18: Total proctocolectomy w/ loop ileostomy

& ileoanal anastomosis creation (J-pouch)

 

7/18/18: Loop ileostomy reversal / J-pouch hook up

 

Dx: February 2020, Chronic Anemia

35 Iron Infusions 

Dx as Crohn's Disease 9/30/2021
w/ Fistula

 

 


#23 Emptyspirits

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Posted 25 November 2021 - 08:08 PM

IBS-C, severe gastroperesis, intestinal malabsorption, GERD, malnutrition, emetic episodes, diarrhea. Even had to get a tube with jejenal access to be fed because my stomach doesn’t work but even the tubes kept flipping (NJ, PEG-J)


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#24 Emptyspirits

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Posted 25 November 2021 - 08:09 PM

IBS here... it makes eating even more difficult as I get so bad stomach pain from some specific foods. The bloating too is absolutely terrible. Also very bad constipation, I poop once a week.

NOTE: I started to have all these symptoms AFTER I recovered; I was eating around 2500-3000 calories a day, 6 meals a day, and was weight restored and did some sports too (running and gym), so the symptoms aren't at least ONLY because of ED. They haven't gone worse once I relapsed, they are pretty similar still. But of course ED doesn't make them any better.
I have visited the doctor / gastroenterology and he also thought that it is IBS.


Mine got worst after being weight restored as well.


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#25 Pax~Immorte

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Posted 25 November 2021 - 09:28 PM

I know you have the gastroparesis but is it possible, if a coloectomy is in the future to have J-pouch surgery? I'm a J-poucher. They just took my small intestine and repurposed the lower part to act as the rectum so I can still go to the bathroom normally. I had an ileostomy for 4 months and while I coped, I never want to go back.

I was later diagnosed with Crohn's which they never would have done a J-pouch on me if they knew that because Crohn's patients are more likely to develop fistulas. . .which I DID! And that's how we found out I was misdiagnosed all along. (original dx was Ulcerative Colitis)

But I'm grateful for the misdiagnosis because I was able to get the J-pouch and now they won't touch me with a ten-foot pole unless I'm dying. I just have to sort out this tiny leak in my intestine now. Thankfully the fistula is tiny and it seems like it's slowly healing. Doctors think the biologics (Remicade/Humira) should close it right up. So I'm hopeful.

Anyway, as long as you're not a Crohn's patient maybe research J-pouches (ileo-anal anastomosis reservoir). Having a ileostomy looming over me for years and then finally getting one, I understand the dread and anxiety of it all. It sucked. I mean, I did cope and I had it down to science in only a few weeks, but I really don't ever want to go back to that.

Just thought I'd throw that out there. You probably already looked into that, but I figured I'd mention it just in case.


Wow what a journey! You have been through so much…
Thank you for the recommendation and I will ask my team
What you suggested is not something I have looked into. I’ve just been putting out fires so to speak as they come upon me just to stay comfortable. I could fund an undergrad with the amount of money I spend on GI products. It’s insanity!
And I am so tired of being told I won’t survive procedures that could help. Now that I’m stronger my doctor says I have a strong case and he will fight for me to get the help I need.
So I really appreciate your input


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#26 Sugarcoated

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Posted 26 November 2021 - 12:02 AM

I had gastritis for a few months so not that long, but it was the worst pain I've ever experienced physically. I went on a really bland diet for that time of and slowly eased back into certain foods. I feel for anyone who has to deal with it long-term because I could barely handle it for 3 months.



#27 toxic.in.waste

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Posted 26 November 2021 - 01:49 AM

I have a motility disorder that I'm trying to get diagnosed, I might need a colectomy, might also have gastroparesis, it's likely also genetic tho

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#28 timetravel

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Posted 26 November 2021 - 03:38 AM

Pancreatis and Nephritis; not technically gastrointestinal issues but once I had IBS, gastritis, constipation, I knew it would only be worse in the Long Term from: Restrictions, B/P, laxative abuse, diets etc. Which it did. 😪😪😪😪😪

#29 LosingHoney

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Posted 26 November 2021 - 08:08 AM

I know you have the gastroparesis but is it possible, if a coloectomy is in the future to have J-pouch surgery? I'm a J-poucher. They just took my small intestine and repurposed the lower part to act as the rectum so I can still go to the bathroom normally. I had an ileostomy for 4 months and while I coped, I never want to go back.

I was later diagnosed with Crohn's which they never would have done a J-pouch on me if they knew that because Crohn's patients are more likely to develop fistulas. . .which I DID! And that's how we found out I was misdiagnosed all along. (original dx was Ulcerative Colitis)

But I'm grateful for the misdiagnosis because I was able to get the J-pouch and now they won't touch me with a ten-foot pole unless I'm dying. I just have to sort out this tiny leak in my intestine now. Thankfully the fistula is tiny and it seems like it's slowly healing. Doctors think the biologics (Remicade/Humira) should close it right up. So I'm hopeful.

Anyway, as long as you're not a Crohn's patient maybe research J-pouches (ileo-anal anastomosis reservoir). Having a ileostomy looming over me for years and then finally getting one, I understand the dread and anxiety of it all. It sucked. I mean, I did cope and I had it down to science in only a few weeks, but I really don't ever want to go back to that.

Just thought I'd throw that out there. You probably already looked into that, but I figured I'd mention it just in case.


Hello fellow Crohn’s friend! <3


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#30 skymningwolf

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Posted 26 November 2021 - 09:09 AM

I have IBS and a few food intolerances, but I’ve dealt with them most of my life, before developing AN I think.
Already having trouble digesting certain foods and then starting to restrict heavily is just asking for liquid sh*t. I tried to do a vegetable/bean mono for a few days; I spent around half an hour on the toilet 5+ times a day and I thought I had chronic diarrhea LOL.

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#31 Winterfae

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Posted 01 December 2021 - 07:14 AM

Gastritis over here, just about to talk to the Gastoenterologist. I have a bunch of things that might be intollerances but hard to tell tbh, with all the various issues. I know I don't digest solids very well, and I'm waiting on the results from Coeliacs tests. 


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#32 Winterfae

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Posted 01 December 2021 - 07:16 AM

I had gastritis for a few months so not that long, but it was the worst pain I've ever experienced physically. I went on a really bland diet for that time of and slowly eased back into certain foods. I feel for anyone who has to deal with it long-term because I could barely handle it for 3 months.

 

I have it chronically, but they say that the acute one is worse, and I had it acute several years ago and can attest that's true, I couldn't even stand up straight. I'm so sorry you had to deal with this, can I ask if you were give PPI medications (proton pump inhibitors) or if you managed it with diet alone? I have to come up with a reason in like the next 3 hours to refuse the meds because I have a severe distrust of things that cause permanent physical changes. 


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#33 hotfuneralselfie

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Posted 01 December 2021 - 08:17 AM

i have IBS & food sensitivities that weren't really an issue before my ed, they started getting super bad a few years ago when i relapsed hard & it's been a nightmare hellscape ever since. i have to get a colonoscopy soon to see all what my issues are. i'm either super constipated (only go once or twice a week/can't go without prune juice) or the opposite end. 


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current weight: 103.2 lbs (bmi: 16.16)

highest weight: 132 lbs (bmi: 20.67) (i think at least, i wasn't in the 130s for very long, it was due to refeeding/medication adjustments)
lowest weight: 96 lbs (bmi: 15)
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just an oaty boi

 


#34 Sugarcoated

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Posted 02 December 2021 - 06:54 AM

I have it chronically, but they say that the acute one is worse, and I had it acute several years ago and can attest that's true, I couldn't even stand up straight. I'm so sorry you had to deal with this, can I ask if you were give PPI medications (proton pump inhibitors) or if you managed it with diet alone? I have to come up with a reason in like the next 3 hours to refuse the meds because I have a severe distrust of things that cause permanent physical changes.


Sorry I just saw this but I managed it on diet alone besides being prescribed some tums that I didn’t take. If your concerned you should ask your doctor, but I think a bland diet of soft foods did the trick for me!
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#35 Winterfae

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Posted 02 December 2021 - 07:24 AM

Sorry I just saw this but I managed it on diet alone besides being prescribed some tums that I didn’t take. If your concerned you should ask your doctor, but I think a bland diet of soft foods did the trick for me!

Thanks so much. My results from the gastroscopy went to my GP practice and I got prescribed omiprazole without any conversation but I read the letter and it had gone to another Dr (mine is usually really understanding and talks things through) so I think they're probably just really busy at the practice and didn't have time to make an appointment and juts handed out the prescription. I'm going to try really hard to fix my diet, I know the purging can't be helping and some of my low cal safe foods won't be the best for me either.

I really appreciate your reply, thank you
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#36 Winterfae

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Posted 02 December 2021 - 07:33 AM

Just an update cause I said I was waiting on the coelics test, I don't have that or stomach cancer or any of the other stuff they were looking for but I do have gluten sensitivity, probably FODMAP intolerance, gastritis and Cyclic vomiting syndrome (stomach migraines).

I'm pretty sure I have IBS as well but I've never been able to eat normally enough to tell.

I've had delayed stomach emptying in the past but hasn't turned into chronic gastroparisis (yet) though I feel I'm just at the beginning of how bad this could get if I don't deal with it now.

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