Surgery or not?

I'm new to this forum so any help/advice would be appreciated. I am 33 and was diagnosed with proctitis in 2004. After a relativley short course of Pentasa I was fine, and was fine until May 2009, when all hell seems to have broken out. My symptoms came back, diarrhea and bloody stools and severe stomach cramps. I was admitted to hospital and given IV Hydrocortisone, and had a colonoscopy done, and was subsequentley diagnosed with UC Colitis. After spending 15 days in hospital I was fine, and was discharged and was prescribed prednisolone. I was taking 45 mg a day, and for a month I was fine, then exactly the same happened, and i was again admitted to hospital, IV Hydrocortisone, discharged on prednisolone, was fine again. Low and behold, 3 July, relapsed, severe stomach cramps, and you guessed it, admitted to hospital and put on IV Hydrocortisone. I explained to my Consultant that I was not happy, and could not continue with this constant relapsing. After doing research on the web, and having an Aunt with UC Colititis, I had come to the conclusion that if surgery became inevitable, a collectomy, with the K pouch would be preferred for obvious reasons. Anyway, after explaining this to my Consultant, he agreed, but then I was told I could only have the surgery in 8 weeks due to the amount of steroids in my system! My girlfriend is pregnant and the baby will be here in approx 8 weeks, so that is not ideal! I have since been put on Azathiprine, and am weening off the prednisolone (thank god, horrible side effects for nothing obviously), and have been told that if i relapse in the next 2 months, they will have to operate. I am starting to become depressed with all this and the way my Consultant was talking it sounded like a small op, but when the surgeons came to see me, they explained it and sounds like a huge op, and will take months to recover. Anyway, maybe the Azathiprine will work, and i wont need surgery, but any views, opinions, advice would be appreciated. Thanks for listening, Stephen.

summerstorm, thanks for your reply and your advice, it's much appreciated.

Hi Anna, thanks for replying, strange as it sounds, hearing from someone who has/is going through the same as me, gives me some comfort. I know what you mean about plans and dreams etc. I feel constantly stressed now. I feel sorry for my partner, how would she cope with a new baby, and our 5 year old son if i have to back in hospital. My parents are worried sick, theres a history of bowel cancer in my family, and I know they think I'm hiding things from them. Then theres work, they were fine at first, now they have started to get on my case. All i can do is hope this Azathioprine works. They told me 6-12 weeks to work. I felt ill this morning for the first time since coming out of hospital about 10 days ago, just hope the tablets can keep it under control! I really appreciate you taking time to reply to me, hope to hear from you again, take care, Stephen.

I just had surgery 6 days ago. Today I've been unhooked from my IV so now I'm pretty mobile. All I have left is the removal of inflammation tube and pouch which is collected fluid, then I can go home with my colostomy bag tomorrow. I was up and walking around either the next day or the day after the surgery. Pain was never really an issue, just trying to get out of bed the first 3-4 days was a tender situation, walking wasn't bad though. Personally I thought the surgery was a breeze... but I'm still pretty young (24) and was probably not in as bad shape as many who turn to surgery were. One of the worst parts for me was the pee tube catheter and being woken up many times a night for IV change, catheter changes, etc. Other than that I feel great today and actually feel like I could go back to work tomorrow if I wanted to... but I will probably wait at least another 3-4 days if they even let me go back so soon. The bag doesn't even smell like normal stool, doesn't smell great but that's just during the bag change, and I'm not sure many people would even recognize the smell anyways, since it smells different than typical poo, at least for me. Prednisone, Humira, etc. taken in high enough doses are pretty bad. I can't say I've regretted my decision 6 days out so far, and things are only getting better, bag will be removed in ~2 months and I feel fine. For me the surgery seems to have gone 100% as planned though, so I don't know what it's like if things go bad. I had my surgery done at UCSF medical center and can't complain so far. I had UC for 4 years, and was taking weekly Humira but stool frequency increased and I had to resort to prednisone again. I don't think that's really a road people should go down for very long. Even having a permanent bag I could probably deal with (I'm probably more conscious of body image than most males and so far I don't even really care about having the bag much for some reason...), but I'm betting once my J-pouch is connected it should work pretty smooth. The ostomy can be pretty loud at times when it's spitting out waste, but it seems to only last for maybe a 5-10 minute spurt and then slows or quiets down. Only notice this a couple times of day, maybe in the morning or everning. I've only had it functioning for 4-5 days now too, so it should slow down and probably get quieter too. The first ~2-3 days after surgery there was only inflammation fluid that came out into the bag, and then with a liquid diet the ostomy started producing waste maybe around the 3-4 day for me.
I was on prednisone for a few weeks before the surgery, and was down to 2.5mg or so only a day or 2 before the surgery. They actually wanted me to keep taking it up until the day of surgery but I quite taking it a day or 2 before. They put you back on after or even during the surgery anyways, to reduce inflammation post surgery. Today I'm switching to oral prednisone for hopefully just a few days until the inflammation is down enough. Up until now I've been taking corstisone or something liek that through IV, something related to prednisone or maybe the same type stuff. I was also on weekly Humira just and stopped just a couple weeks before my surgery.

stephen, congrats on the baby! i am just behind u, my wife will have our first baby in january..i am pretty healthy right now, i have bloody diarriah mostly in the morning..so i am going to ask if i can have the first surg in september and the second sometime after baby is here, once my wife is better and can function ok.

gosh, i know it will work out good for u, worrying doesnt help anything, i know i say that but i worry about EVERYTHING i was stressed the whole first trimester, worrying about miscarriage, there will always be somethin to worry bout.

Im the same as you qwerty...I have Ulcerative proctitus and all my meds have been failing me also. I cannot take immuran because of a reaction that left me hospitalized for a few days. Has your dr talked to you abourt remicade? My dr is persuading me to try this next and even mentioned surgery if this didn't work or at some point quit working. It scares teh hell out of me to get the surgery also....im hoping it won't come to that.

ruissarr, congratulations to you aswell, and good luck on both fronts. I know what you mean about worrying, its hard not to!

Qwerty, i am also from the uk (Manchester?. Have you researched about the best places in the uk to have surgery. The 2 experts in this field are based in London and Leeds, and they do surgery via keyhole, which is obviously better for scarring, but als the recovery time is considerably quicker, and you have the right to be referred wherver in the country you wish! If I end up with surgery, I will definitely be looking into this! Good luck!

Anna, fingers crossed I am feeling the best Iv'e felt in the last 3 months. I was told the Aza would take 6-12 weeks to kick in, so its either a coincidence, or it has started to work quicker? I stil get stomach ache now and again, and a bit of bleeding, but I could cope with this for the rest of my life if could guarantee it wouldnt get worse! I'm only taking 50mg, ive weened of the prednisolone, a bit quicker than i was told to if I'm being honest, but I just couldnt cope with the side effects! The only side effects I seem to be having are lack of sleep, and my joints seem to ache all the time, but like I said before, I'd take this compared to the past 3 months! I may try taking it at night, as I currently take it first thing in the morning. I'm glad things seem to be working out for you, I hope I follow suit! Has your Dr mentioned anything about how long you can take Aza for? Speak to soon!

Thanks again everyone!

Hi everyone, not been on for a while. Was wondering if anyone has suffered side effects , or knows of anyone that has suffered side effects from Azathioprine. I'm not complaining, as I've been symptom free for a few months now, it's just that i seem to be tired all the time, and my joints, especially my back and knees are killing me all the time. Also, I'm loosing my hair! Any thoughts or experiences would be helpful!

Thanks

Good idea,lol, thanks Sue.