Endlessly confused and frustrated

Hi everyone. I have posted about my current flare several times, and I have appreciated everyone's help. I am hoping that I can benefit from your wisdom again. I feel like I am a totally mess right now and my doctors are not quite sure what is going on. This flair keeps going and going and it is really starting to take a toll.

I have been in a flair since January of this year, but with this flair I had many symptoms that I haven't ever had before. I got this sharp pain in my lower left abdomen. After using rectal meds for a month or two it progressed to extreme urgency, blood, mucous, and 10 bathroom trips a day, most of which were oddly fully formed. I had a lot of rectal pain as well, which I haven't had before. It would hurt to go to the bathroom and then ache for hours afterwards. I was put on prednisone and the symptoms seemed to improve. I was then put on Remicade, but I had an allergic reaction--horrible rash that lasted for six weeks. Then my doc put me on 6MP in the hopes that I could tolerate the Remicade better and that it would be more effective. He doesn't seem prednisone as a long term option, so he wanted me to try these others, so I could get off the prednisone.

Once I started the 6 MP, I stared to have to urinate a lot--10-20 times a day. It wasn't so bad, just annoying, until I then got my second Remicade treatment last Friday. I only got a mild rash thanks to antihistamines and probably 6MP, but now I have a ton of pain in my left side. Every time I drink anything, I have to go to the bathroom almost immediately and my bladder really hurts. The rectal pain is also back and I am constipated and my stomach is swollen. I am still urinating 10-20 times a day. Because excessive urination isn't a listed side effect of remicade or 6 MP, My G.I. sent me to my regular doctor and she ruled out diabetes insipidis, renal problems, electrolyte imbalance, and UTI.

So basically I am urinating all the time, my bladder hurts pretty much all the time, my left side hurts, I've got pretty nasty rectal pain and I am constipated (but no blood or D, thank god).

Does anyone know if inflammation in the colon can cause bladder problems? Could 6MP be causing this? Can remicade make your inflammation worse? If my regular doctor rules out everything she can (I am waiting on one more test), do I go back to my G.I.? He doesn't seem to think it is related to the medicine.

I haven't had a colonoscopy since April of last year b/c I have been flaring for a while. Could all of this be caused by a polyp or something like that? Should I ask my doctor to do a scope? My old doctor gave me one every year.

I'm sorry for all the questions. I am just so sad, frustrated, and in pain. I seemed to get better only to develop a new symptom or an old one to resurface. There seems to be endless possibilities of what is going wrong, all of which necessitate visits to different types of doctors and tons of tests. I just don't know who to turn to. My regular doctor doesn't know a lot about Remicade and 6MP and my G.I. seems convinced it is not related to the meds. He even sent me to a gynecologist after telling me the pain was probably gynocological only to have my gynecologist tell me it is probably my ulcerative coliits. How the heck am I supposed to know who to listen to?

I know most of you can relate to this--I just am so tired of being sick and tired. I am tired of my life revolving around U.C. and I am tired of all the tears and sitting at my computer trying to figure out what might be wrong with me.

Sorry for the rant/vent. I hope everyone else is having a good day. If you have any thoughts about what to do or any experience with bladder-related UC problems, I'd appreciate your advice.
Thanks,
Bridget

If you do a search online I do believe I read that remicade causes freguent uriniation and constipation. I noticed it as well but not as bad as you.

 

Thanks everyone.

Christine--Yes, they did rule out those things with blood and urine tests. I am waiting on a 24-hour urine test result, but My GP thinks it will come back normal as well. She hasn't mentioned a CT scan or ultrasound. She said she will call me to discuss things after she looks at the last test result. I will ask her about the CT scan and sonogram. I really like the GP, but she acknowledges that she isn't that familiar with Remicade and 6MP because she naturally doesn't prescribe it.

Princesa--I completely agree. I often feel like I am "slipping through the cracks." Nothing is more annoying than having each of my doctors say that my problems don't come under his/her purview. I like my G.I. doctor but he doesn't seem that concerned about drug side effects at all.
I am completely open to alternative medicines/methods. I have tried accupuncture before (I really liked it and think it helped but it was SO expensive!) and I definitely take probiotics and try to as healthfully as possible (going to the farmer's market every week, avoiding meats with hormones and antibiotics, etc). However, I have never looked into seeing an osteopath or alternative doctor. I think I will try to find someone who will be willing to treat my whole system!

Susan--Thanks for looking! I haven't found any sources that say polyuria is a direct side effect of either of the two, but we all know that sometimes these drugs can do some wacky things! My doctor said that he had never had a patient have a 6 week rash from remicade, yet he did have to admit that I didn't have it before the Remicade and it was still very much there 6 weeks later!

Thank you everyone! It makes me feel good to know that there are people who understand what I am going through, although I wish none of us had to deal with this!!!

Have you ruled out a UTI? 6-mp is an immunosuppressant after all.

I am always hungry too. It's frustrating, I am not used to eating so much or gaining weight. I've always been the type that doesn't worry so much about these things. I guess I've been lucky in that respect but now I am feeling the struggle to get back to skinny. I am pretty sure that 6mp has caused me to pee more often. I am not too concerned about it, it probably adds up to an extra 3 or 4 trips to pee a day. It's inconvenient but it's better than running to the toilet to stink it up all day. Then again, I am doing that quite often as well. I don't sleep from the prednisone, do you? I must get a total of 4 hours sleep a night and it's disturbed 6x. I don't even get up to use the bathroom or anything, just roll around or walk around the house and try to find something to do... It's really hard to focus at work when I am unable to get a decent nights sleep. I was checked for UTI a few weeks ago and nothing.

i definitely pee more since starting 6mp.  my doc just looked at me too and didn't really respond to my observation.  i believe it most definitely is a side effect of the drug.  just because it isn't noted in the literature doesn't mean it isn't a real side effect!!!  hope you feel better soon!

Leysa,

Thanks for the tip. I had no idea that getting it cultured was even a possibility. I will definitely ask the doc.

Bridget