• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

My story

I was recently diagnosed with Crohn's Disease in December 2011 but my story goes back to 2004. I was diagnosed with IBS in 2004 and have been treating that ever since. In April 2011 I started losing my appetite, having diarrhea, and all foods were causing major cramping issues. I played this off as an IBS flare up that normally last a couple days, except this never stopped. Over the next couple weeks the diarrhea, and loss of appetite, was not joined with rapid weight loss so I looked into going to see a GI. I had a colonoscopy done in August of 2011 and supposedly nothing was found and the GI said I'm just having a bad flare up that is lasting much longer than normal and he suggested I go on a new form of IBS medication (have since forgot name) and start taking Immodium regularly along with Anxiety medication. I tried this for about a month to no avail so I went back to the GI for a follow up where he said we can try other forms of medication, but that I must not be taking the medication properly because he doesn't understand why it is helping me. So instead of going along with what he said I went for a second opinion with a new GI at a different practice. This GI scheduled me for just about every test imaginable from an upper endoscopy to lower GI ultrasound. After a couple weeks of testing it was finally shown in a second colonoscopy that I had Crohn's in my upper Ileum. By this point it is now going on December, I am forcing myself to eat, am getting sympathetic stares from customers at my work, and have lost over 60 pounds in eight months.

I have since been placed on Pentasa 500mg which I take 2 pills 4x daily. On March 13, 2012(Friday the 13th!) I had emergency gall bladder surgery because of gall stones blocking my gall duct from my liver into my gall bladder. Since the surgery I have been having issues with everything I eat and drink and going to the bathroom nonstop. I have not had a solid stool since mid February although I am on medication. My gastro has since put me on Cholesteryol along with the Pentasa to help with the diarrhea which so far has not helped at all. I am up to 1 5mg packet of Cholesteryol 3x a day along with taking the Pentasa. Does anybody have any insights or suggestions on what I can do to help get back on track. Mid December to mid February was a great run; I had an appetite back, was eating foods regularly without major issues, and was regaining weight.

I have been suggested to try supplement shakes using Hemp or any other Super Food to help get my carbs, and protein levels back up. At this point I am up for trying anything, and am just looking for a direction to get myself back on track. I hopefully look forward to some responses...
 

Trysha

Moderator
Staff member
Hello Stewie
Welcome to the forum.
You have certainly been having a hard time of it and hopefully you will be soon on the road to recovery.
Is one of the drugs cholestyramine and have other bile salts been suggested.?
It might be a good idea to check back with your GI and let him/her know you are not getting a good response, and whether there is something else to help you.
There will be others on the forum more knowledgeable than I and who will certainly be along to help you.
Feel better soon
Hugs and best wishes
Trysha
 

David

Co-Founder
Location
Naples, Florida
Hi there and welcome to the forum :)

Frankly, based upon what you're saying I don't think that Pentasa is enough for you. It's not even approved for use in Crohn's Disease though it definitely does work for some. The problem is, it's usually only going to work for mild cases because it is a topical anti-inflammatory yet Crohn's can affect the entire width of the bowel. I'm guessing that you've moved passed the mild phase. You can read some information about the role of Mesalamine (the active ingredient in Pentasa) here.

I think it's time you discuss additional treatment options with your doctor. In addition to medications, you may want to look into enteral nutrition as well.

We're here for you.

*hugs*
 

Angrybird

Moderator
Location
Hertfordshire
Hello Stewie and welcome to the forum. I agree that the Pentesa may not be enough to get things under control for you so definetly get back onto your doc about your ongoing symptoms. Fingers crossed they can get you started on a new/additonal med that will get you feeling better.

AB
xx
 
Top