Share Facebook
Crohn's Disease Forum » Your Story » Anyone else with the terminal ileum infected?


12-06-2017, 09:11 AM   #1
wiggles24
 
Join Date: Jan 2012
Location: Nova Scotia
Anyone else with the terminal ileum infected?

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.
12-06-2017, 09:22 AM   #2
Lisa
Adminstrator
 
Lisa's Avatar
 
Join Date: Apr 2010
Location: New York

My Support Groups:
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?
__________________

30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
12-06-2017, 11:04 AM   #3
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Welcome, I agree.
__________________
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
12-06-2017, 11:29 AM   #4
Bufford
Senior Member
 
Join Date: Dec 2015
Location: Northwestern Ontario

My Support Groups:
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.
12-06-2017, 01:10 PM   #5
wiggles24
 
Join Date: Jan 2012
Location: Nova Scotia
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.
12-06-2017, 01:53 PM   #6
Bufford
Senior Member
 
Join Date: Dec 2015
Location: Northwestern Ontario

My Support Groups:
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.
12-06-2017, 02:00 PM   #7
wiggles24
 
Join Date: Jan 2012
Location: Nova Scotia
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.
12-06-2017, 07:17 PM   #8
DougUte
Senior Member
 
DougUte's Avatar
 
Join Date: Jul 2010
Location: Kaysville, Utah

My Support Groups:
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.
__________________
Surgery Oct 12, 2010

Crohns Medicines:
Started Humira June 22nd, 2011
Increased to weekly injections on November 1st, 2016
Due to the insurance company, Humira ended on January 31, 2017.
Started Entyvio February 9th, 2017
Loperamide 3 capsules twice a day
Vitamin B6, B12, Folic Acid
Vitamin D3 10000 I.U.
Nature Made Multivitamin
12-07-2017, 03:39 PM   #9
JaimeM
Senior Member
 
JaimeM's Avatar
 
Join Date: Sep 2015
Location: United States, North Dakota

My Support Groups:
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.
__________________
Diagnosed Terminal Ileum Crohns 2008
Remicade 6yrs
Had a healthy baby boy 2014
Switched to Cimzia but didn't work 2015
Back to Remicade and added Azathioprine 2016
12-07-2017, 04:02 PM   #10
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
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.
12-07-2017, 05:26 PM   #11
Guerrero
Senior Member
 
Join Date: May 2017

My Support Groups:
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.
12-08-2017, 09:18 AM   #12
Dollyxdior
 
Join Date: Dec 2017
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
Reply

Crohn's Disease Forum » Your Story » Anyone else with the terminal ileum infected?
Thread Tools


All times are GMT -5. The time now is 07:59 AM.
Copyright 2006-2017 Crohnsforum.com