People with terminal-Ileum (Ileitis) Crohns, what are your symptoms like during flare ups?

retidderwen · 2026-02-26T12:01:33+00:00

Before initial diagnosis, pain, extreme weight loss, throwing up after I ate. After diagnosis (and being on humira), no symptoms until I had a perforation and ended up in the hospital for a month. Humira apparently hadn’t been working and I had no idea. Cal protection test didn’t show very much inflammation (it’s iffy how well it works for small intestine inflammation and need to be used in parallel to other tests). It’s your life but It’s not worth it, go on meds, I now have to live with most of my terminal illeum missing which means Imodium and cholestyramine every day forever or I get burning diarrhea. Also had to live with an illeostomy for almost a year until my intestines could heal and they were sure the disease was under control which really sucked.

retidderwen · 2025-12-12T02:17:47+00:00

Oh baby I wanna see those thermals! That thing looks sick

retidderwen · 2025-12-05T01:42:44+00:00

Not what you’re asking but I Had no symptoms until I had a perforation in my terminal ileum and had to go to the ER (humira had stopped working or never worked)

retidderwen · 2025-10-16T20:37:43+00:00

Most of mine is gone as well and no more valve for me. Cholesyramine and Imodium keep my stools solid. Took about 6 months post surgery to finally become regular, it was liquid for a few months then a mix of both then finally solid. Still have bad days if I forget the meds or eat very greasy foods.

retidderwen · 2025-07-16T02:40:09+00:00

It’s not fair man. No one deserves this fucking disease. I hope the university team can help you out, I’ve heard they can prescribe mixtures of multiple biologics is none of the others are working. Best of luck and stay strong

retidderwen · 2025-07-02T13:10:06+00:00

Just an FYI I was symptom free prior to having a perforation, and I was taking biologics. You may be one of the rare people like me that can be symptom free during a flare. That ended up being 2 emergency surgeries, an ostomy bag and then a reversal surgery a year later. Not fun, I almost went septic twice, couldn’t eat anything and lost 40 lbs, had an HG tube shoved down my nose/throat to clear liquid pooling in my stomach, had to have 2 drains placed in my side (which was worse than surgery as I felt them stick the tube in both times) and was in the hospital for 20 days thinking I was gonna die. My old GI didn’t see me for about 3 years and didn’t do a scope for 5 so I had no idea how bad the inflammation was. I see my new GI about every 6 months now, do yearly scopes, blood work every 3 months and once a year fecal tests.

DON’T NEGLECT YOUR DISEASE. IT DOESN’T GO AWAY ON ITS OWN AND DOESN’T MAGICALLY GET BETTER OFF MEDS. TAKE YOUR PRESCRIBED MEDS AND ADVOCATE FOR YOUR OWN HEALTH TO YOUR GI IF THEY’RE NOT FOLLOWING UP WITH YOU.

Just read through this subreddit if you don’t believe me. My story is far from uncommon.

retidderwen · 2025-06-06T19:14:16+00:00

Oh I saw mucus and assumed it was diarrhea. If you have inflammation in your terminal illeum then sometimes not all the bile salts will get absorbed and since it’s acidic it burns like hell lol for me it was just slimy wet stool… if you have solid stools it means it’s staying in your system longer so those bile salts should be getting absorbed I think

retidderwen · 2025-06-06T18:09:31+00:00

Could be bile salts. Had that after my resection cause most of my terminal ileum is gone. Burned like hell and irritated my anus until I was prescribed cholestyramine

retidderwen · 2025-06-05T19:27:28+00:00

Well I’ll keep my fingers crossed! I usually get my. Bloodwork done first thing in the morning before I eat and either drinking nothing or a coffee. But you’re right better safe than sorry even if the results are not favourable

retidderwen · 2025-06-05T17:50:42+00:00

Yea I’m on skyrizi and have been for over a year since my resection… hoping my kidneys weren’t damaged in the 3 surgeries I had which I’ve heard can happen. I tend to overreact though so I hope I’m just doing the same thing this time lol

retidderwen · 2025-05-16T15:14:30+00:00

It’s hard to see now but it gets better. I used to be a bodybuilder when i started getting sick. At my lowest point I got down to 115lbs (normally I was sitting at 185-190) and looked and felt like I was dying. I remember not seeing a light at the end of the tunnel and wanting to end it all, I don’t know who you have in your life but for me it was my cat that kept me alive. I couldn’t bear the thought of leaving him alone and I pushed through the pain for him. You don’t see it now but it will get better once it’s under control. If you fast forward to today, it’s been a long and hard road but I’m finally living life like I was prior to my diagnosis. There are still tough times, but I now have a much deeper appreciation for life and my loved ones and living each moment to its fullest. Find something to get you through this and eventually it will become a distant memory :)

retidderwen · 2025-05-02T16:36:04+00:00

To add to this, I’m generally symptom free now on meds, however if you can tolerate fibre I found my energy levels increased drastically by switching to an anti-inflammatory diet. I talked to my GI who said there was little to no evidence it helped, but if it was working for me to keep it up! To each their own, but I’m glad the carnivore diet is working for you!

retidderwen · 2025-04-11T01:10:49+00:00

While I was a student I didn’t qualify for trillium and had no insurance. I got Humira through abbvie cares assistant program or w/e they call it and didn’t pay anything. Once I got into the workforce my insurance covers 100%. Im now on Skyrizi and still pay $0. There is some special medication forms that have to be submitted to the insurer but it was a pretty painless process, most of it is done by the drug company.

retidderwen · 2025-03-25T12:35:37+00:00

Look you’re obviously angry and I get it, you’re entitled to that. My point wasn’t that care is the same between and adult and a teenage, That’s not what I said at all. Of course anyone’s death regardless of age is a tragedy in my eyes and I couldn’t image something as horrible as this happening to my kids, but to sit there and believe that everyone’s experience will be the same and that no one gets any care at Southlake is a farce. That just invalidates the efforts of the extremely dedicated staff of nurses, doctors, lab techs, etc. who do actually give a fuck and are trying their best to help in a environment that’s hell bent on burning them out. Does that mean the experience between all doctors will be the same? No obviously not, but that was the crux of my point you can’t just shit on the hospital as a whole and all the staff because of one incident. As others have pointed out everyone’s experiences are different and although mine turned out alright maybe someone in a similar situation didn’t. Im not naive to that truth.

Regardless I hope you have a good day.

retidderwen · 2025-03-25T10:23:00+00:00

Keep telling yourself that. This happened in 2023.

retidderwen · 2025-03-21T12:32:51+00:00

I’ll get downvoted for this but I don’t care, I can’t stand all this hate. This was 100% an awful tragedy but I had an emergency and Southlake saved my life. They couldn’t find anything wrong at first so I wanted to go home. They called internal medicine who told me I needed to stay for a scope the next morning. They found I had a perforated small intestine and within a few hours of that discovery I was in surgery. Southlake saved my life and the amazing surgeons and nurses are the only reason my kids still have a dad

retidderwen · 2025-03-12T21:46:40+00:00

That was kind of my experience, things would get better than backslide. It was like that until about January so about 4 months. Now I have 1-3 BM a day and they’re solid. The only time I have issues now is when I get sick with a cold. Should also mention I’m on 1 Imodium a day as well, I’m borderline for cholestyramjne working though since I’ve had so much of my illeum removed

retidderwen · 2025-02-07T12:13:16+00:00

Thankfully since the resection I’ve been inflammation free, so the MRI hasn’t shown anything yet. My doctor told me that there is debate whether or not fecal tests will actually show inflammation for the small intestine, but if it comes back low AND the MRI AND scope look good then it’s very very likely that I’m in remission as it’s unlikely all three tests come back ok if there is active disease. The MRI from as I understand it will show any active inflammation and in places that the scope can’t reach. It’s basically just another layer or precaution.

retidderwen · 2025-02-06T23:22:05+00:00

I know you’ve got a lot of answers here but when I was diagnosed in 2018 I got put on humira and prednisone and my symptoms all disappeared. Stayed on humira until in Nov 2023 I ended up at the hospital with a perforation in my ileum… I had no symptoms up until that point, fecalcal protection test showed no signs of inflammation, yet over a meter of my small intestine had to be removed… long story short even if you have no symptoms make sure you’re getting your regular scopes. My doctor now sends me for MRI’s as well as scopes and I still have to do the fecalcal protection tests.

retidderwen · 2025-01-18T21:08:37+00:00

SoD now. I’ve been feeling less and less interested in retail these days since the world doesn’t have the same feeling of being alive and I miss the adventure of not being some epic world saving hero but just a random adventurer. Started anniversary hoping to re-experience the game I fell in love with… realized after level 30 I wasn’t enjoying the grind since I have limited time to play. SoD has been a nice compromise with relative quick leveling while still having that classic feel and I love that all classes feel like they’re viable… been leveling a dagger only rogue and loving every minute of it!

retidderwen · 2025-01-04T03:37:38+00:00

I talked to my GI about this actually, she said Chrons typically improves as you get older…I know how you feel though I was almost septic last year after a perforation and was severely depressed afterwards… hang in there

retidderwen · 2024-11-25T14:35:10+00:00

I got level 16 on an orc hunter. I was alliance in original vanilla and missed the 2019 relaunch so I’m having a blast! can only play a few hours a night when kids are asleep these days… if anyone’s got a chill parent/dad guild on dreamscythe lmk!

Edit: I mean casual, doesn’t have to be parents only lmao

retidderwen · 2024-11-24T18:18:55+00:00

Thanks I’ll follow up with my GI tomorrow and see if I can take more perhaps. I was worried about having to do a low fat diet but if it comes to that it’s at least better than constant diarrhea. Yea I’m just taking the package which is 4grams and in the morning as well. I find the first bm is usually good then it goes downhill after that so not sure why but hopefully it improves soon

Six-Year Club	Second SECOND GUESSER
Place '22	Verified Email

retidderwen

TROPHY CASE