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Never Ending Saga.....

Hello Everyone! It seems my story with this disease never ends! I have lived with this disease for 17 years and worry what the next 17 might bring. I have been on a whole list of medications including 6MP, Pentesa, Remicade, Humira, Pednisone, and now on the Vedolizumab open label study. I also had a resection of my small intestines in 2001. I have been told that I have advanced disease and although the Vedolizamab isn't controling all of my symptoms, I really dont have many options left. That scares me especially since I am so limited in my diet right now - living the low residue life style! But gaining weight rapidly (gained 18lbs since mid January). I am pretty sure I have a stricture as I have had two blockages that resolved themselves in the past 90 days but my doctor doesn't seem to be taking any action and it's so frustrating! I would like to be able to eat an apple or a banana without dying!!!!

Just looking for anyones advice or stories of secondary surgeries! Anyone else gaining crazy weight on Vedolizumab?

Hi Bravegirl

Welcome to the forum! 17 years is a long time to have been living with this disease, and it truly seems like you've tried the full range of meds available to us.

I was on the Vedolizumab study, but had to quit because of some serious side effects. I don't recall gaining weight on it, although I did gain a fair bit of weight on Humira.

Once I failed Vedolizumab and all other meds, surgery was my only option. I also had a lot of narrowing and strictures in my colon. I wanted to be able to leave my house for 15 minutes without cramping and crapping my pants. Like you, I wanted to be able to eat something other than white bread without fear of blockages/obstructions.

I got myself an ileostomy three months ago and it has been wonderful. No cramps. Increasing the variety in my diet and have been able to eat fruit, hummus, Mexican food, and other foods that I've not been able to eat in ages.

If you go to the Treatment section of the forum, you will notice a subforum titled "Surgery"---you might want to take a look at some of the threads there, or if you have a specific question about surgery, then you'll be able to post it there and get replies from others.

Again, welcome, and look forward to your input around the forum!




Your Story Forum Monitor
Welcome, Bravegirl. I am so sorry to hear you have gone through so many treatment options without success. However, it sounds like Vedolizumab is working for you being that you are putting on weight. Have your symptoms improved?

I don't have any experience with surgery, but I know it has helped many when things are bad. If the time comes you need another, I hope you get the relief you deserve.