Need more reassurance than anything... oh so desperate.

I was diagnosed with ulcerative proctitis last may, which supposedly doesn't exist and is just a term some doctors use to refer to ulcerative colitis when the ulcers are in the rectum. But anyway, for three years my only symptoms were bleeding and daily diarrhea that wasn't at all explosive. I could live around it easily, just had to go to the bathroom 4-5 times day. But now in the last two months there has been this gradual worsening of everything to the point now where I've had to quit my job and move back in with my parents because I'm running to the bathroom 30 times a day and cant even sleep! I cant even think that wearing diapers would help even if I needed to go to the hospital because of how frequent, rancid and painful it is when I have a BM anyway.

I have an appt scheduled for my doctor next tuesday and my father is ready to take me to the hospital if necessary (haven't eaten in two days and am struggling to drink water but think I'm still dehydrating) but I just feel so full of despair right now. I can not believe that a chronic health problem like this could exist, be this brutal and not kill everyone who had it within a month. But I've been reading around this and and other UC forums and compared to some people, mine isn't even that bad! Maybe a 7 out of 10 compared to some of the horror stories out there. How do you people do it? How do you keep your sanity or keep from becoming suicidal? Did you have to go on disability and is that even possible in the U.S.? How am I supposed to pay for medical treatment when my parents can no longer afford it? Will I just be expected to BM myself to a bloody dehydrated death?

But most importantly... oh please just tell me something reassurring now. It's not even the end of the first week of my presumed flare-up and I already cant take it anymore.

Bathroom 30 times a day is severe and you do need medical intervention.
Disability is a different issue and from what I've heard needs an expert too, as in a lawyer that specializes in that field. Not easy or fast or cheap.

It is good that you can live with your parents while trying to get your health improved. I think it is very possible for you to do that but will take time. Like you I could not believe how bad this disease could be and I could still walk around alive. Please get some blood tests to check for anemia and whether you have any infection (C. dificile is one to ask about a test for).

Take it one day at a time and start reading here about the different Rx meds. You need to get an insurance policy and you will probably qualify for one at very low or no cost. Ask the doctor what Rx meds you might need to take and then check each policy to see if they are covered. Your state should have an office who helps people like you decide which policy is best.

It sucks that sick people have to do all this work when they are sick but at least the internet lets you do it at home near a bathroom.

Make some chicken broth from chicken bones and drink it. Best thing for dehydration and to give you vitamins and minerals. Try and get some enemas when you see the doctor, they help much more than oral meds to get bleeding stopped.

After seeing the doctor come back here and ask questions about what he/she said and what your next steps are. If you haven't had a colonoscopy in the last year your doctor will probably say you need one. That's also why you need insurance.

Your life will get better but many of us have had to do a lot of the work ourselves to get our colons back in shape. Best wishes

Thanks so much! I had a colonoscopy when I was diagnosed in may and was prescribed canasa and I took it for about a month and it didn't seem to help so I stopped. At the time my symptoms weren't severe and I had learned to live with the diarrhea and was only concerned with the bleeding. I'm only six days in since the flare reached its worst and I just cant believe how drained I am.

yeah, at this point, you have severe symptoms and canasa aint gonna do crap for your right now. you will most likely need prednisone to get you out of this one and then a maintenance medication that you MUST commit to taking.

You should use the Canasa, too. You'll have the best chance of the meds being effective if you treat the problem from both ends, both oral and rectal. Canasa might not be enough and you might need retention enemas. Although at this point you might not be able to get it under control with only mesalamines.

Thank you kip, that was reassurring although I do hope I'll be able to skip the prednisone because I've had a bad reaction to it in the past and tend to have bad reactions to drugs in general. I was never in denial that I had ulcerative proctitis, but until very recently I was holding off on believing that it had probably moved onto ulcerative colitis... even now I use words like "probably"... I sure do hope that this is just some far out coincidence like maybe it's still just proctitis but I have a gut infection or virus or something...

Well I just got out of the hospital yesterday and am still deathly ill. The frequency of my bowel movements and the blood are down signifcantly, but the pain and cramping is beyond tolerable. I'm so weak I cant even get up and down the stairs anymore and am on the verge of having to sleep in the bath tub. The first hospital I went too kept me for 5 days and then decided I should have my colon removed and transferred me to another hospital who thought I wasn't healthy enough for surgery. They put me on IV solumedrol and mesalamine but I quit taking the mesalamine because I'm 99% sure it's what is causing the cramping because I never even had that problem before and in the few days following the transfer they had me off it and it went away and didn't come back until they put me back on it. I'm supposed to be eating and I have another surgical evaluation scheduled for next wednesday since I told them I want it out one way or another. I am definitely not going to put up with anymore of this, ever.

Post Edited (UCbrutaldespair) : 1/22/2015 4:51:29 PM (GMT-7)

Sounds like you still need to be in the hospital. It's unlikely that the prednisone is the culprit but it's possible the mesalamine is. Some patients actually get worse with it. I have a friend with proctitis who experienced that and is now on imuran. But back to you...why did they discharge you being so ill? What meds did they send you home on? I'm confused by your management at the second hospital. No meds? Then added meds? For all that is holy, you must take something so your dear folks don't find you in the bathtub lying in your poo.

I just saw your edited post regarding surgery. Good luck!

Ok, that makes more sense. I can't believe they wouldn't give you pain medicine though! I always get IV dilaudid every 3-4 hours as needed when I'm an inpatient. That's cruel and completely bogus. I too am considering surgery but terrified of pouchitis. I've had too many unusual things happen in the last year of my UC that I think I would be inviting it. Keep us posted on your surgical consult.

I may have missed it in one of your posts, but did they try putting you on Remicade? I was hospitalized for 16 days several years ago with a very severe flare (going 25+ times a day, unable to stay hydrated, losing over 25 pounds in two weeks) and stopped responding to all my regular meds (mesalamine, Rowasa and prednisone). While in the hospital, I received one infusion of Remicade. Within 5 days of taking the med, my flare was completely under control and I was able to leave the hospital. I couldn't believe how fast it worked! I did not want to to take Remicade forever and actually preferred the idea of surgery as my long-term treatment option. However, my hope was to use the Remicade to get healthy enough to go in for the permanent ileostomy surgery I wanted within six months. The docs had wanted me to do three infusions of Remicade, take a break from the med to get it out of my system and then get surgery but things didn't go as planned. I got excruciating joint pain from the Remicade so it was stopped after that first infusion. Fortunately, even that one dose healed me enough so that I was able to get surgery a month later. I didn't fall back into a flare in that short time and ate like crazy to gain weight and health. I was able to get my colon, rectum and anus removed and my backside sewn up all in that one surgery which is what I had been hoping for. It has been four years since then. My life feels normal again and those horrible symptoms of UC seem like a distant memory. Anyway, Remicade is thought of as a long-term maintenance drug but it can also work to end a flare quickly in some cases. I really appreciated that it kept me out of emergency surgery and bought me some time to regain my health and research my options.