Am I getting better or not?

[cca2013]

In Sept while hospitalized due to a flare, it was discovered I had a stricture via colonoscopy. About two weeks later, after various tests (another colonoscopy, barium scan, etc) and a dose of remicade, it seems the stricture went away. I was released from the hospital on Oct 6th and was told to keep up the low-res diet and take certain meds such as prednisone.
When I was released, I was still in the midst of the flare. Still was running to the bathroom 10x a day and was still producing bloody stool. However, twice I had normal bm's. My stomach cramped like crazy and hurt, but the bm's were normal in size and width...as if I wasn't having a flare...which is why I was confused...since all other symptoms pointed to me having a flare still.
On 10/15 I had my third remicade infusion. I noticed a decrease in symptoms right afterwards. I am no longer running to the restroom and when I poop there is no blood. I am still a bit tired, but no where exhausted like before.
On the downside, I can go days, sometimes a week without pooping. This may be due to pain meds...I'm taking tramadol at the moment. And when I do poop, it's long and skinny. Not like my normal bm's.
On one hand I feel I'm getting better, but with certain symptoms, I'm nervous thinking I'm getting worse. Any advice?

 

[Johnnysmom]

Pain can continue to happen even when inflammation has gotten under control. My son's Sed rate and CRP were normal 6 days after starting prednisone but he still had stomach pain on and off for a few months after. It could also be caused by constipation, which could be from pain meds or from scar tissue.

I would give your GI or nurse a call and tell them about the constipation to get that under control. Miralax is an over the counter laxative and it is safe but your GI should probably be aware of what is going on.

My son slowly got better on 6mp but it took over an entire year for him to be normal and in solid remission. I am glad we didn't give up on 6mp and switch drugs. Talk to your GI but hang in there, it sounds like things are starting to get better and my guess is that they will continue to.

 

[cca2013]

Thanks @Johnnysmom for your reply and I'm glad to hear your son is doing better!

It's frustrating because while on one hand I'm doing a lot better than I was, let's say two months ago, certain symptoms that I currently have, such as the thin poop and constipation, make me nervous to not "fixate" on my cd so much. By that I mean, to get back to being normal again: going to work, school, going to the movies, without being terrified of what will happen. I hope I'm making sense.

 

[Jennifer]

Sorry for the late reply cca2013. Did you talk to your GI about these symptoms? What did they say?

To me to sounds like you're getting better but also sounds like you may or may not be dealing with a narrowing. If it continues I'm sure your GI will want to run some tests to see what's going on exactly. With constipation its always a good idea to increase your fluids. Let us know what your doctor said and keep us posted on how you're doing.

 

[cca2013]

Hi Jennifer! Currently I'm still dealing with "county" hospitals so it's a bit hard to get answers; for example they scheduled me for another colonoscopy in March 2014, but even they said it was very important to receive another test to check on my stricture.

I start work in Dec and health insurance for Kaiser will kick in Jan. I'm hoping I can make it, so then I can tell a new GI about this past flare and get another colonoscopy. I just hope that if there is some narrowing/blockage that I don't get worse and I can make it to Jan to get the treatment I need.

Right now the good thing about the county is I'm able to get Remicade infusions, but unless I go to the ER in pain and stay for weeks willing to be the "study" for students, they won't do much about my current symptoms.

 

[Jennifer]

Are you still on the low residue diet? Eating smaller meals more often may also help some (at least with pain). If things get really bad then you could temporarily go on a liquid diet but make sure that your doctor knows about your symptoms and that you're going all liquids. Hope everything works out and that you start feeling better soon.

 

[cca2013]

Yes, I'm still eating low fiber food. My main concern right now is the thin poop and constipation. I may just be a worry wort, but ever since I was told I had a stricture (even though they claimed it went away), I'm still afraid that it's returned.