Crohn's disease and Terminal Ileitis

[rudegyal]

Hi, I was diagnosed with crohns and terminal ileitis. I'm on budenosine. I feel like it's partially working as my stomach doesn't hurt nearly as much as it did before. I'm just curious if the terminal ileitis does get better? I can't find very much information online about it. My Dr just says " take your medicine, don't lift weights, dont do anything strenuous". If budenosine doesnt work, he's switching me to Humira. Also is humira only injections?

Before diagnosed I lost 21lbs, I started eating better in regard to what my guts can tolerate. I figure if my stomach isn't going to absorb properly at least I can try to only offer healthy food to it. lol for a few days I felt great, today I feel exhausted.

Does it get better? I'm trying to be hopeful but I don't find much positive results in regard to the terminal ileum.

 

[ronroush7]

Everyone is different. I had my terminal ileum removed. Just stay with your medicines. I wish you the best.

 

[rudegyal]

Everyone is different. I had my terminal ileum removed. Just stay with your medicines. I wish you the best.

Thank you

 

[ronroush7]

Welcome

 

[ronroush7]

Keep us updated.

 

[rudegyal]

Keep us updated.

I will, what happens when it's removed?

 

[ronroush7]

It is harder for your body to absorb bile acids.

 

[my little penguin]

The terminal ileum is the most common affected part of Crohns
Ds was dx at 7 and after remicade (another biologic ) and later humira
All of his scopes have looked perfectly normal including the terminal ileum

Remicade is an iv infusion at the hospital every 8 weeks
But can be as often as every 4 weeks
Takes 6-8 weeks to be effective

Humira is an injection given by you every two weeks
But can be as often as every 5 days
Takes 3-4 months to be effective

Buesonide is a steriods which can not be used long term
Slightly better safety profile than oral prednisone but still a steriod
So side effects are there with long term use

 

[rudegyal]

He told me to take the budenosine for 6 more months. Is that normal? He said I do not have Crohn's disease in the ileum, that crohns in the small intestine is separate, then said it's terminal ileitis. It didn't make sense to me. Maybe it was his way of trying to explain it being two different issues. My GI doesn't elaborate much.

 

[rudegyal]

Edit

 

[Jabee]

There are three parts of your small intestine: the duodenum, jejunum, and ileum. Many crohn's patients have inflammation that is localized to the very end (terminal) of the ileum where it empties into the colon. I suspect that is what he meant when he said terminal ileitis (which basically means inflammation of the very end of the ileum). Budesonide is a steroid that is released into the terminal ileum to reduce that inflammation. It is one of the milder medications but is a steroid. Many patients take it for 3 months and then taper off it gradually but others have used it for longer periods.

Hope that helps and I'm glad you're feeling better.

 

[rudegyal]

Thank you! The way he explained was confusing. From what I've read terminal ileitis, is Crohn's in the ileum but he said it's not Crohn's, that's in your small intestine lol the Ileitis isn't improving though as of yet.

 

[eleanor_rigby]

It sounds like your doctor is not diagnosing you with Crohn's but has diagnosed you with general inflammation of the terminal ileum, which he is not giving a cause for.

I suspect he is putting you on steroids for 6 months hoping it will disappear and you will have no further problems. If it is in fact Crohn's disease causing the inflammation and not "unknown cause" as your doctor is currently suggesting, then you will need to change medications and be on a medication long-term.

 

[Missfitz]

Hi there. I hope all is well with everything. Hopefully the inflammation clears up. I have a fibrotic stricture in that section of my small intestine. I was on the entocort for maybe 4 months after my hospitalization for partial bowel obstruction. I didn't end up needed surgery but I am off all meds now with the exception of Humira. I have difficulties with pain and distension due to the stricture but otherwise all is mostly well. If you don't yet have any strictures, if you end up having crohns that is, I would focus on eating a diet of of whole natural foods. I have read a lot and suspect that processed food and sugars breaks down the lining of the instestine for those of us that get the IBD. For me personally, I juice frequently as I have a tough time digesting most greens. But youre in a good place if you don't have a stricture yet! Take an excellent probiotic, that really helps soothe the insides - I make my own SCD (specific carb diet) yogurt and that also has helped tons. Also if you feel your doc isn't really explaining stuff to you well enough, you owe it to yourself to find one who does

 

[rudegyal]

Umm ok , no.If I wasn't diagnosed with Crohns he wouldn't have said " you have two separate diagnosis" . Would you like a copy of the records? Lol

I didn't ask to have anyone decipher what he said, I commented that he explained terminal ileitis wasn't Crohns, yet on here it says it is.

Hsv w great day

 

[rudegyal]

Hi there. I hope all is well with everything. Hopefully the inflammation clears up. I have a fibrotic stricture in that section of my small intestine. I was on the entocort for maybe 4 months after my hospitalization for partial bowel obstruction. I didn't end up needed surgery but I am off all meds now with the exception of Humira. I have difficulties with pain and distension due to the stricture but otherwise all is mostly well. If you don't yet have any strictures, if you end up having crohns that is, I would focus on eating a diet of of whole natural foods. I have read a lot and suspect that processed food and sugars breaks down the lining of the instestine for those of us that get the IBD. For me personally, I juice frequently as I have a tough time digesting most greens. But youre in a good place if you don't have a stricture yet! Take an excellent probiotic, that really helps soothe the insides - I make my own SCD (specific carb diet) yogurt and that also has helped tons. Also if you feel your doc isn't really explaining stuff to you well enough, you owe it to yourself to find one who does

My diet is fine, as I've altered it to a more healthy level. I do not have a stricture thankfully! That's why we did the follow through on the small bowel. He didn't explain anything at all other than telling me I had Crohn's in the small intestine, and that I had terminal ileitis until last week. I called and told them I shouldn't have to go online to find out information. Yet here I am lol He just said per above, and don't go lifting weights or doing anything strenuous.

You're correct about the processed food. It does break the lining down. I'm not a fan of "diets". i just eat whats healthy and doesn't hurt. I already do probiotics.

 

[eleanor_rigby]

He said I do not have Crohn's disease in the ileum, that crohns in the small intestine is separate

Honestly, I think in terms of probability it is MUCH more probable that this 'terminal ileitis' is in fact Crohn's disease and not a separate thing to your small bowel Crohn's. The most common place for Crohn's to manifest itself is in the terminal ileum. I find it very odd that your doctor would consider them two separate things but there you go. At the end of the day it is kind of irrelevant as you say you are aware you DO have Crohn's so I suppose the disease location doesn't matter too much right now.

What is important to realise is that Budesonide is a short-term solution and you have a long-term disease. For lots of reasons this drug should not be taken long-term and is not a maintenance medication. It may clear up your Crohn's related inflammation but when you stop taking it the disease will come back. Going round in circles with steroids where you take it, clear the inflammation, stop taking it, inflammation comes back, start taking again etc etc is not good for Crohn's. It can cause the inflammation to turn into scar tissue, which is the worst thing for people with Crohn's in the small bowel. It significantly increases your chances of needing surgery down the line.

A diagnosis of Crohn's disease requires proper treatment in the form of immunomodulators or biologics. Then, in answer to your original question, it will get better.