Blood in stool and 6mp...what about remicade?

[sdarling]

Hi, I just registered to be a member of this site, but I have been browsing the forums for years. I was diagnosed with Crohn's Disease in 2010, but had issues with it starting much earlier when I was 14 years old in 2007. Anyways, I have a question. For the past 3 weeks, I have been getting a small amount of blood around my stool off and on (and sometimes on the toilet paper), I know this is not considered a great amount of blood, but I just finally got into remission from a flare earlier this year that started at the end of August. I was finally able to be a 100% off the prednisone by the second week of March. When I first noticed the blood it was a week after getting off the prednisone. I called the doctor after seeing blood everyday. (I usually go at least a minimum of two times a day, the second BM always had no visible blood). The doctor thought it sounded more like hemorrhoids. However, it is now May and I still get the blood off and on (less frequent now every other day vs every day). I am concerned that I'm still seeing blood. What has me more concerned is the fact that I forgot to take my meds yesterday (Apriso and 6mp) and this morning I had more blood in my stool than usual. In my teens, the doctors kept putting me off as having hemorrhoids, even when they all said they could "not feel any". And after my first and second colonoscopy, hemorrhoids were never found, but the obvious was the patches of ulcers following along my colon. I'm nervous because in my colonoscopy the doctor found a fistula from my large intestine into what he thinks is my small intestine (but CAT-Scan and Barium Enema could not see it). I decided to go on 6mp first because I wanted to avoid Remicade, if at all possible. My doctor says if 6mp does not work, than it's off to Remicade. The blood in my stool has me nervous the 6mp is not working (other than yesterday, I have never missed a dose). Should I be worried? I have a colonoscopy next week so I'll know more then. But I would rather be prepared that I might have to go on Remicade than keep putting myself in denial.

 

[Clash]

Blood is always concerning to me. Could you be dealing with a fissure? Either way it needs to be investigated and it probably a good thing you are having the scope next week.

During the time you have been experiencing the blood have you also been having the necessary blood work to ensure inflammatory markers are low and 6mp is in therapeutic range and not affecting the liver? Or possibly fecal calprotectin stool tests to detect inflammation in the GI tract?

I think with any medication, diet, supplement that regular lab work and a fecal calprotectin test is a good idea to stay on top of disease activity. It is a given on remicade as my son was on both remicade and mtx and had blood work every six weeks but blood work was never a good indicator for him so we also included fecal calprotectin.

I hope you get answers next week!

 

[SarahBear]

Try not to worry. I know it's easier said than done, but stress can be a big factor in these sorts of things.

You're already having a colonoscopy soon, so there's no need to stress yourself out right now. You're doing all you can.

You might end up on Remicade. If so, you'll likely feel better than you do now. Side effects are often exaggerated. You're unlikely to experience more than a few (if any), and these few will likely decrease in severity and disappear entirely as you adjust to the medication. Untreated or improperly managed Crohn's is riskier than the medications used to treat it. It's also possible that they'll want to put you back on Prednisone and continue with the 6MP.

Don't let them blow you off and say, "It's just hemorrhoids, even though we don't see any…" If that sort of nonsense continues, look into finding a new GI. Ask a lot of questions when you talk to your doctor - if you need to, make a list and take it in with you.

:hug:

 

[theOcean]

I've dealt with a fistula, though mine was perianal. I've also been on both Remicade and Humira if you're worried about biologics, so you can ask me any questions or talk to me about any concerns you may have about them.

If you are experiencing blood despite being on 5-ASAs and an immunosuppressant and they have failed to keep you in remission, it may mean that it's time to go on a biologic. In the short-term I'm sure you'll probably be put on prednisone, though.

 

[sdarling]

Thanks everyone, hopefully I'll know more tomorrow! I started 6mp in October and had my blood checked weekly for two months because my WBC was continuously elevated. Once that went down to normal my doctor had me get my blood tested every two weeks, my liver enzymes seem to rise and then stabilize every 2 weeks, so my doctor put me down to monthly blood visits, just to keep it in check. The blood disappeared Friday and Sunday, but returned yesterday and today. So I'm not really sure what's going on. Thanks for the support!

 

[theOcean]

Keep an eye on things and as long as you're getting regularly monitored you should be fine, and your doctor should be able to advise you on what to do. If things ever get worse, definitely mention it to your GI, as well.

Good luck!

 

[sdarling]

Well an update from yesterday. The colonoscopy showed that I have an ulcer once again in the last inch of my colon near the rectum (although doctor says he doesn't quite understand why that area is having issues) the rest of my colon is in great shape until you reach the fistula. The doctors took x-rays during the colonoscopy and found that my fistula is in the cecum and ileum area with multiple ulcers. The doctor said it is time to start new treatments, meaning Remicade or Humira. I meet with him on June 2nd to discuss my options. Thanks for all the support!

 

[theOcean]

Good luck! Remicade and Humira do wonders for fistulas, so hopefully they'll really help!

 

[sdarling]

So my doctor and I decided to start Humira next week. The only decision left is whether I take Humira alone or with 25 mg of 6mp. I know there is an increase chance of developing lymphoma when you take both, but the chances from my understanding are still slim. Anyone else use the combo? Is it worth it?

 

[theOcean]

I was on a combination of Humira/Imuran. I never had any problems with it. The only time it becomes a risk is if you become too immunosuppressed from the combination -- but then you would just ask your GI about stopping the 6mp and being only on Humira, so there's an easy solution. I'd say it's better to try both and see how you feel.

The combination would be really good for your fistula, though. Both of them should help it heal.