What is going on with my body?

[raspberryapple]

Hi everyone, this is my first post here.

I was tentatively diagnosed with Crohn's about 5 weeks ago. Basically, the biopsies were not totally definitive (but also didn't rule out Crohn's) but my doctor feels that based on the colonoscopy, symptoms, and family history (my dad had severe Crohn's), that Crohn's is the most likely diagnosis.

I've been on Asacol (4800 mg) for 5 weeks and Entocort (9 mg) for 3 weeks. I actually feel like I am getting worse! Although the pain is somewhat better, the urgency and frequency has gotten much, much worse, which is also aggravating a fissure.

I'm wondering if anyone has ever experienced something similar... I usually go to the bathroom once in the morning, and then am fine most of the day (maybe with some pain or cramping occasionally), and then by late afternoon/early evening I begin a series of 3-8 URGENT bowel movements across the rest of the evening. I am not eating very much at all, trying to control my symptoms at work, and I feel like I am putting out wayyyy more than I am actually taking in. Every so often, it is watery diarrhea but it is most often very soft, sticky/slimy stuff. Some movements are large volume, sometimes I feel huge urgency but then only actually have a tiny bowel movement.

I emailed my doctor this week and he prescribed Donnatal which I haven't taken yet. I also have Lomotil but I'm not sure if I should take it if I'm not actually having watery diarrhea.

My concerns are the urgency (even when it turns out to be a small bowel movement), the frequency that is aggravating my fissure, and the fact that I have lost about 8 pounds in the last month (and I was already very slim).

Should I ask for different meds? Is it possible I have something other than Crohn's and these meds are making it worse? My doctor wants to do a repeat colonoscopy and CT enterography in December/January... he seems to not be super concerned with definitively diagnosing me, but just treating the symptoms.

Thanks.

 

[DJW]

Hi and welcome.

I'm sorry you're dealing with this.
Unfortunately I don't really have an answer for you. My suggestion is to get in touch with the doctor.
Eight pounds is a lot to lose if you don't have much weight to begin with.

I hope you start feeling better soon.
Sending you my support.

 

[Madhu]

Hi, your suspicion is right. Please follow up with your doctor or find another good GI. My husband was also in a similar position. With a colonoscopy he was diagnosed and put on Apriso and mesalamine enema for 2 months. Doctor then said to come after 3 months for a repeat colonoscopy. His symptoms kept going down and coming up of course, but it wasn't a definite solution to the problem. He had a massive flare up 3 months after diagnosis and was then sent to an amazing specialist GI. We sometimes wish we had done that sooner so we might have not gone through all the pain. Good luck and stay strong!

 

[Cody_1980]

I feel for you I was diagnosed 4 or 5 weeks ago and I have been in an active flare for 2 1/2 months. I was diagnosed by an endoscopy, colonoscopy and a blood test. I am on Asacol and have pain EVERY day. I don't have diarrhea but do have constipation. I am beginning to wonder if I will ever feel normal again.

 

[Dcarp]

I had a runaround with doctors,, due to being misdiagnosed by a G.I.

I have a hole in my duodenum, from a fissure, that now connects to the large intestine. I felt the symptoms, seen stars, nearly passed out, vomited and defecated, on the front lawn. Mentioned this to my doctor, and his comment, "That happened to me". Blew it off, as though it was nothing at all.

If it was not for me getting upset, and calling the doctors a bunch of, "Educated Pharmacists, working for the drug companies" I would not be on Remicade today.

The G.I. said I had minor scar tissue and colitis, after the fact, I had been evaluated by U.C. Davis, with crohn's. I was initially evaluated in 97, and couldn't get any help from the doctors. In 2007, I called a newly acquainted doctor, an educated pharmacist, and he sent me to be re-evaluated at U.C. Davis.

It was a bad surprise, to find out I had crohn's, in both intestines, along with an open hole, that had healed. It took a professor G.I. to exam that I was pretty messed up, from years of not getting proper treatment.

Good luck to you, you might have to squeak more, to get attention.