Inflammatory bowel disease (IBD) support group: Let’s connect

If you can find the reference for the article you read on IBD medications, @gaur, I'm guessing other members would be interested to read it.

I would suggest anyone with IBD go to the many sites that explain Low Dose Naltrexone and read up on it. I know it helps people with Crohn's as I am one. I am now medication and symptom free and have had two "normal" colonscopies. LDN was the only change I made. I don't call myself "cured", I still watch what I eat. But things are pretty easy, in that area anyway.

Gastropareses adds to this and the liquid diet helps, getting chills and feeling cold all the time is part of this? AM 81 and even the INSULIN DEPENDENCY is going awry. HOW do you deal with ALL of this. THE NEUROPATHY IN BOTH LEGS IS WORSENING ALSO. TOO MANY VARIABLES AT ONCE IN A DAY.

Thank you for starting this separate group!

I have had IBD since 1986, it started out as UC. I was treated for UC for 9 years mostly with prednisone, foam enemas, etc. Finally was referred to Mayo in Rochester, in 1996, thank goodness. Within a week or so, I was scheduled for a jpouch after which I had been hospitalized twice within a month, and had lost 35-40lbs in about 2 months and my hemoglobin had gone down to about 6, I was more than ready for some type of relief. I had a 2 step jpouch, April and July of the same year. I did well for 8 years, then in 2002 I ended up with a recto-vaginal fistula, which I still have, tho it doesn't cause much of an issue or any pain, just embarassment now & then. Finding the fistula I was told it meant that I most likely had Crohns at this point. I have been on oral medication ever since which has kept me out of hospitals and in remission other than a few minor issues. I had a checkup & different tests recently, checking muscles, ability to empty my pouch, and an MRI, mostly due to night time incontinence for the past 2 years. They noticed some atrophy & thinning in the rectal cuff/sphinter area, which I'm not sure if that is the reason for the leakage? I am now transitioning from Azathioprine & a Cipro/Flagyl rotation to Tremfya, and am hoping that this will at least remedy the leakage somewhat. I also take metamucil & loperamide (OTC) daily. My pouch will be 30 years old in April 2026, I have actually been very fortunate as I have not had a hospital stay since my takedown in 1996. I feel I am too young for Depends, but it is what it is, and I am still here and kicking! I thank my gastro & my surgeon, for giving me back a fairly normal life, I have no regrets about opting for a jpouch, it has been a great choice for me personally. Wishing all of you the best in your own journeys, and hope that you can also find the right treatment or lifestyle that works for you. I am constantly reading the IBD comments from others, and still learning as I go.

I was diagnosed with Crohn’s in 2017 after about 4 years of testing. Crohn’s was located in the middle and distal portions of the jejunum. I did well on Entyvio for 4 1/2 - 5 years. I was changed over to Stelara and was on it for almost 2 years. I had to be taken off of it because in a 17 month period I had Influenza A and two bouts of pneumonia. I’m not taking anything for Crohn’s now. My problem is that I have developed painful swelling in my axillae. I’ve been to numerous doctors but no one has any idea what’s causing it. My GI doctor isn’t sure that it’s caused by the Crohn’s but he sent me to a surgeon who’s doing a biopsy in 2 weeks. Labs have been essentially normal except for small elevations which have corrected. The next step after this is a rheumatologist if I can get in to see one. Has anyone else had this problem? I’m at my at my wits end. The pain radiates down my arms, to my upper chest, and upper back where I have a bulging disc. Any recommendations would be appreciated.