Stubborn cramping/tenesmus

I would have surgery in your shoes too, and I can say that with confidence because I did. I didn't bother with xeljanz. I don't see a point in living a hellish life. I am so much better off these days - like a new person. Sure, I go to the bathroom more, but I eat whatever I want, I go where I want, I travel, play sports, I don't spend money on health and I don't deal with pain or unpredictability. If you spent a day with me, you would be really surprised by how much, and what I eat. Literally, night and day compared to how I lived with UC. The most important thing before considering surgery is to ensure it's UC and not Crohn's. You should consult. Even if you decide it's not for you, at least you will be informed (and I will get off your back about consulting ) Don't give up your potential for happiness and success for this illness.

John, I think Mark is already on prednisone...

My BMI is 15 right now. I was already in the hospital for about 9 days. They sent me home because I was on a recovery trend, but then things collapsed while at home. Honestly, this is the way it always goes. I have to let the deterioration happen, as painful as it is, because after about 1 month a switch will flick and then I will start recovering and life will return to normal. That's why I think my colitis may be viral. It matches the viral outbreak pattern.

NSSG, a colectomy is not beyond reason. It's something I am always considering. I just need to rule out Crohn's and also viral colitis, but finding a doctor to do the proper investigation is difficult. I really need to sit down with a doctor who is capable of thinking out of the box and rule out certain things once and for all. Only then will I feel comfortable getting my colon out. If it's viral colitis, then the risk of the virus spreading to other organs after a colectomy is high. Then I will still be seriously ill, minus a colon. And if it's Crohn's, then maybe a resection is a possibility, which is honestly what I'd ideally want anyway. My presentation is patchy. If they could remove the worst hot spot, my sigmoid, and patch it back together, I could live with the other inflammation. The sigmoid is the center of all my pain and suffering.

quincy, they did a CT scan a couple of weeks ago and there is no abscess. My bowel just shows standard UC inflammation and thickening. No diverticuli, no abscess, no blockages, no overt signs of tumours. I'm sure I have a lot of pseudopolyps in there since I haven't had a scope in ages.

iPoop... that sounds horrible. Nobody should die over UC, not in this century. My life is not in jeopardy, but I appreciate you worrying about me kicking the can too far down the road. I know exactly what you mean. I do have a time limit set on all this. It's been 5 years and I'm not keen to waste much more of my prime years on this ridiculously cruel illness.

There is actually a research hospital near here, maybe I can get a referral to one of those. Then I can bring my specific grievances and possibly get testing. Great idea!

My blood work today was not good. CRP is still 85... it hasn't budged one iota. So I need to figure something out and soon. I can't stay on high dose pred forever. Ferritin is high, over 110. I know it's an inflammatory marker, but before I left the hospital they also gave me two iron IVs. I wonder if maybe that's why it's so high. I haven't got back my hemoglobin test yet but I'm guessing it's going to be low.

This flare sure is a B.

To anybody reading this... have you found that if you don't watch your diet super carefully while your flare, your CRP won't change, or will even increase? It's unusual for me to not have my CRP go down after 3-4 weeks of pred. Granted, it was as high as 162 weeks ago... but it had dropped to 50-60. Now it's up again.

Thanks for taking the time to visit my thread and post responses. It means a lot to me. Sorry if I am short tempered sometimes. I'm in a lot of pain and on a lot of narcotics, not to mention prednisone, and it's making me overly emotional sometimes. PLEASE DON'T TAKE IT PERSONALLY. Deep down I am really grateful.

Oligodar said...
Mark,

we really try to help you. But we have very limited options. Take the advantage of a research hospital near you.
You and us have lot of hypothesis but without proper diagnostic tools we are blind. I believe there is an solution for you. Do not waste time hypothesizing about viral/bacterial cause. Go to the research hospital, they will do tests and they will offer you a solution. Sometime the ego is real problem. Put off believes and disbelieves about your illness and let them help you.

I cross my fingers for you

I e-mailed my GP this evening. We are very close and on good terms. She is in the process of referring me to a really good GI I've always wanted to meet, who himself has UC. He might be retiring soon though so I don't know. Anyway, I also asked her if she could refer me to the research hospital as well. I've got nothing to lose at this point.

I agree that ego can be a big problem. That's why I like to communicate with people a lot while I'm flaring, because I can get different perspectives and reality checks. Also I'm just really lonely sometimes, being stuck in my apartment.

I'll post more updates as things change.

chocotofu said...
@MarkWithIBD

You should really try marijuana if you're that desperate for a halt in peristalsis. Don't cry that it's illegal if you're somehow able to get all the drugs suggested above without seeing your doctor.

Also, you'd really benefit from a mind-body practice like meditation or yoga. All this internal rage is doing absolutely nothing for your rectum. Your emotional state will always influence your weakest area in the body.

Cannabis doesn't work, it was one of the first things I tried years ago. That, and CBD. I live in a legal state.

I don't really believe the new age woo woo of yoga and emotional regulation. I have flared during some of the happiest and fulfilling times in my life. In fact, one time I flared while I was doing yoga teacher training and I had to quit. Yoga is great exercise but you can't mind-over-matter your way out of a serious disease. Managing stress and emotional life is important but I wasted too much time on "inner work" that had no relationship to IBD.

Modern people are too self-obsessed with "processing" stuff. My IBD isn't because of emotional trauma or rage. I'm angry because I'm on prednisone and because I'd rather be doing anything but stuck in bed tending to this malfunctioning organ. I think anger is a perfectly normal response to that and doesn't need to be "fixed".