Anyone else with the terminal ileum infected?

[wiggles24]

Hey all, I'm new to this site, but I've had Crohn's for about 5 years now and 4 years on Humira. My disease is located at the connection between the small intestine and the colon (terminal ileum, I guess is what it's called). Anyone else with this spot? I'm going through another flare up where my small intestine is so small and inflamed, my food is barely passing and I am unable to eat much solids. My colonoscopy in September could not pass through the infected area, it's so small. I've been on prednisone for 5 weeks now but I'm slowing coming off them and the pain is returning. Has anyone tried any weed oil and has it helped? I don't know what other options I can make without doing surgery or more heavy medications that don't seem to be working. Any thoughts, please share. Thank you.

Valerie, age 31, Crohn's Disease, Humira bi-weekly, Prednisone, only family member with Crohn's.

 

[Lisa]

Sorry to hear you aren't doing well. With strictures, often the way to take care of hte problem is through surgery and removing the affected section. If the stricture is due to inflammation, getting that under control may be enough to get you through more time without having to go through surgery. That being said, it is easier on the body to go through an elective/non-emergency surgery than an emergency one.....

Sounds like you may need to change up your medications also, have you discussed having your humira dosing schedule adjusted?

 

[ronroush7]

Welcome, I agree.

 

[Bufford]

I found taking Turmeric and ginger has greatly reduced inflammation throughout my GI tract and has eliminated the bloating belly I had. Pain in my resection where my stricture is located has improved greatly. This is something to look at and discuss with your doctor.

 

[wiggles24]

Hey Lisa, my doctor doesn't want to do surgery yet, last resort he said but also mentioned if the prednisone doesn't help with the inflammation we may have to up my humira dosage from 40 mg bi-weekly to 40 mg weekly. Not sure if Remicade would be a better option?

Yes Bufford, I have lots of bloating and gas after I eat, even with small amounts and sometimes with just drinking my Ensure protein drink. How do you take your tumeric, I think I've heard someone else mention this for inflammation.

 

[Bufford]

I take a level teaspoon of powdered Turmeric, the stuff found in the seasoning section and simply mix it into a glass of cold water and drink this after having chewed a peeled piece of ginger about a gram or so.
Interesting you mention the problems with Ensure. i have that happening too particularly if I am having even a small flare. I found that for me its easier to take half a portion of these energy shakes.

 

[wiggles24]

Thank you, I will try the Turmeric.
Yes, I've noticed I've had to drink half the portion of the Ensure shakes so I don't get too bloated or gasy with burps. Maybe it is all the diary, I don't know.

 

[DougUte]

Hi Valerie!

The terminal ileum is the most common location for Crohns to appear. I ended up with surgery removing 3 feet of my small intestine and 6 inches of my colon. There was nothing the meds could do with the strictures I had. Reducing the inflammation is a good start though. Hope things start going better for you.

 

[JaimeM]

My crohns is also in my terminal ileum. I think i have something like 24cm of affected bowel at my last MRI. However, I have been doing really well. I started Remicade and Imuran last year and after struggling to get the right dose I seem to be doing better. I have even started eating really healthy and exercising.

 

[ronroush7]

My crohns is also in my terminal ileum. I think i have something like 24cm of affected bowel at my last MRI. However, I have been doing really well. I started Remicade and Imuran last year and after struggling to get the right dose I seem to be doing better. I have even started eating really healthy and exercising.

That is great.

 

[Guerrero]

Hey Lisa, my doctor doesn't want to do surgery yet, last resort he said but also mentioned if the prednisone doesn't help with the inflammation we may have to up my humira dosage from 40 mg bi-weekly to 40 mg weekly. Not sure if Remicade would be a better option?

Yes Bufford, I have lots of bloating and gas after I eat, even with small amounts and sometimes with just drinking my Ensure protein drink. How do you take your tumeric, I think I've heard someone else mention this for inflammation.

increasing humira may help, especially if humira did work before
otherwise remicade or other biologics (stelara, entyvio) may work too. there are some good options try before surgery.

 

[Dollyxdior]

Does anyone know how I can actually use this.. I'm new.. But so desperate with crohns its the inflammation and scars all in my small bowel.. Surgeons will not do anything as its to risky I'm on fortisip drinks anything that's remotely solid won't go thru a stricture I have many.. All through misdiagnosed in 2014.. Found out last year after MRI scan on small bowel and its just to fooked up for any kind of surgery