New member seeking help

[JJ81]

Just found this forum when I googled possible side effects of pentasa. A little history about me, I'm a 30 year old male and have had stomach issues my whole life. For as long as I can remember I've had an irritable stomach and have had to be very careful about what I eat and drink. My Mom has IBD and it's what I thought I had too and probably do have even though it seems like there is no test to say for sure.

Within the last year it has gotten extremely bad making it hard to even function normally at work because I need to be constantly near a bathroom. It's to the point now where I panic if I'm away from the restroom for more then a half hour or so which makes me have to go again. I finally started going to the doctor for this the last six months but it doesn't seem to be helping. Forgive me if the spelling is incorrect but he started me on pentasa and entorcore for three months, I'm still taking the pentasa. It seemed to help initially but doesn't seem to do anything now but leave granules in my stool. I also just started taking azathioprine the last few weeks and the doc just gave me an rx for tnf therapy I believe it's called, don't have the name of that one yet.

My blood work is what showed positive for the crohns and he said I could have ibd with it. I've done the colonoscopy which didn't show anything but he said it was to mushy to see, I don't think my stomach is ever really empty as I seemed to have to go everday multiple times. Did the scope down the throat, can't remember what that was called but was negative. Also just did a small bowel follow through that was negative and the worst test of all to do. He said next will be to swallow a capsule in the morning and I wear a belt all day to see how it goes through me. Never ending tests with no results.

At this point I'm starting to get depressed about the whole thing and don't have anyone that seems to understand. My family says just eat fiber or try some papaya but I've tried everything. I have even been taking vsl3 which is pretty expensive but doesn't seem to do much and I live on pepto bismol. Sorry for such a long first post but any advice would be apprecitated.

 

[JDTM]

Dude, 32-year-old male here -- sounds like we're in somewhat similar situations. I'm on Pentasa and currently tapering off budesonide (Entocort), like you mentioned; it sounds like your doctor moved you up to azathioprine, which also would be the next step for me. You should know that azathioprine takes a while to really take full effect (a few months, from what I gather), so don't lose hope with that stuff if you've only been on it a short while!

An anti-TNF medication is a biologic medication, such as Remicade or Humira. They are pretty heavy-duty meds but they can work very well for people! Depending on what it is you might start, have a look around the treatment threads. And keep in mind that although you might read about scary side-effects or certain drugs not working for certain people, know that everyone is different! These drugs can be very very helpful, so try not to freak yourself out.

Crohn's is an IBD; if your bloodwork is indicative of Crohn's, that's all well and good, but a colonoscopy and biopsy is usually the gold standard for diagnosis. The pill-cam is supposed to be great, however -- the doctor will be able to see exactly what's up in your small intestine. The scope down the throat is an upper endoscopy.

Your family may be trying to be supportive, but if you have Crohn's and you're in a flare, too much fiber can really irritate your guts.

Whatever you do, hang in there! There's a LOT of info on this forum and a lot of helpful and supportive people, so if you've got questions, ask away! You're going to find plenty of people who understand you here!

 

[JJ81]

Thanks for the feedback, it's just starting to feel like nothing is going to help. Reading through some of the other threads some are a lot worse. The worst part is not being able to go anywhere especially when my job requires me to do so. I go to the bathroom then 20-30 minutes later go again, this happens 2 or 3 times. I don't feel better after I go and feel so nauseated. I can't drink or eat anything for hours or I have to go again. I guess I need to give the meds more time but I'm starting to worry the heavier meds I'm getting, have some serious side effects, cancer etc. I'm just miserable in the meantime waiting on something to work.

 

[JDTM]

I'm right there with you man! I'm still not out of the woods yet, and it's easy to freak yourself out about side effects of other medications that you have yet to try. You should know, however, that serious side-effects are pretty rare. (In particular, cancer is VERY rare from everything I've read.) Also, people who have Crohn's and are doing well or are in remission don't always tend to hop on the internet just to tell everyone how great they're doing, so keep that in mind as well. I know it's a tough road at the moment, but you'll eventually find a treatment that works for you!

 

[David]

Hi there and welcome! I'm sorry to hear of your struggles

On one hand, it sounds like your doctor is being very thorough with his testing. I'm glad you're getting a capsule endoscopy. On the other hand, it's a little weird that you'd be put on such powerful drugs and Azathioprine and a biologic without a little more evidence of Crohn's.

How long have you been on the Azathioprine out of curiosity and what dose are you on?

We're here for you bud.

 

[JJ81]

Azathioprine 50mg tablets two a day, I have been taking it about two weeks. He did say he wanted more confirmation of the crohns other then the blood test but everything seems to come back negative. It's so hard to function in day to day life I think he is giving me a head start on some of these to help me. The upper GI biopsy didn't show anything, neither did the SBFT and the colonoscopy was to "muddy" to see anything. I'm convinced the pentasa isn't helping at all or making me go to the bathroom more but who knows. Thanks for the support.

I'm actuall starting to keep a food diary to try to see a pattern but just about anything causes a flare up and I can't live on water. I really like soda and I'm cutting that out but it doesn't seem to matter either. I feel a little better knowing I'm not the only one trying to live with this. I just hope one of these majic rx scripts actually does something since I have a hard time even going to work. I just talked to him earlier and he won't give me the tnf therapy until after the capsule test. I think I need some anti anxiety pills or something since I start to freak out if I'm not near a bathroom. Is this something any of you guys are taking?

 

[David]

Some around here do take anxiety meds but it's not something I know much about, sorry.

As for the Azathioprine, it can take a few months for it to kick in and get to therapeutic levels in your system. It's not surprising to me that it's not doing much yet.

You may want to look into enteral nutrition as a bridge treatment and discuss the idea with your doctor. It's a great source of nutrients and can lead some with IBD to remission.

 

[JJ81]

I'll check it out, thanks David.

 

[JDTM]

I started going to therapy before I was diagnosed -- assuming it was IBS, I figured I had to get my stress levels under control. Turns out... I have Crohn's. Wonderful, something ELSE to REALLY stress out about! :/

Needless to say, I got pretty depressed for a while there, and while I'm definitely improving (at least mental-health-wise), I still have some dips, down days, and I'm still pretty anxious. I'm on a low dose antidepressant/anti-anxiety medication now, and I'm not sure if it's doing much (although it's not hurting anything either from what I can tell). My anxiety is a little bit different, but that's something that I need to work on in a general sense -- I tend to worry about the worst-case-scenario, and when an idea gets into my head, it's tough to stop it and it can make me really upset. (Airplane flights, as you can imagine, are a joy.)

Anyways, sorry for oversharing, but you should know that you're not alone, and that many people who have been diagnosed or who are struggling with getting a diagnosis or finding a treatment plan that works for them also may deal with anxiety and depression. Know that it gets better. I'm still fighting it, but I'm better than I was!