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Proctitis Surgery?

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Ulcerative Colitis
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Posted 6/14/2015 12:04 PM (GMT 0)
Hey guys. So, I have Ulcerative Proctitis which is flaring at the moment and it's absolutely horrible as you all well know.

I was taken in for a colonoscopy recently to ensure it hadn't spread (which it hadn't) and was told that when it came to my follow-up appointment, they would recommend me some more medication or give me the option to have the surgery and have a bag for a short time whilst it healed. I am actually considering this, but would like to know any reasons for or against this.

I'm going to be honest, I'm 21 and if possible, don't want to have to deal with this for the rest of my life. It's already stopping my ability to go out with friends, even walking to shops is difficult as I generally have urgency when out. I'm from England, so it doesn't work out as a costly surgery, but I wanted an opinion.
Posted 6/14/2015 12:32 PM (GMT 0)
Both uc medications and surgery have risks and benefits.

Many here are of the mindset that surgery is their very last resort, that every medication and treatment must be tried first. What medications have you tried? Some choose surgery sooner.

If you get your Ulcerative Proctitis into remission (that is an absence of symptoms) via medications then you can have 1-2 nonurgent bms a day. You still have uc and can and will flareup at some uncertain time in the future. Uc medications do have side effects. Prednisone, in particular is troublesome for it's temporary side effects, and permanent side effects when used repeatedly and longterm.

A j-pouch procedure (the most common uc surgery) gives you 4-6 non urgent bms a day. It is 2-3 surgeries depending on patient health, each with a recovery period. Your new j-pouch takes a while to settle into the 4-6, will be more until it does. Complications can occur, pouchitis, and are treatable but some say a lot less worse than uc.. Some still have diet limitations, even after surgery.

Both uc medications and surgery are imperfect solutions, have risks and side effects/complications. It's a matter of what you and your gastroenterologist think is best given your severeness of uc and quality of life.
Posted 6/14/2015 12:44 PM (GMT 0)
Yeah, I guess. Thanks for the input.

I was in remission up until around three weeks ago, but now I can't leave the toilet, nevermind the house. I had a scope to check for spreading/inflammation and they said it was mild but did not give me anything I can cope with. The only thing that ever seems to work for my flares in Pred foam but they keep giving me different ones, none of which I can tolerate and actually make me worse.

I feel like I'm being pushed more towards surgery, simply because my doctors seem to think that something will work even when it isn't, so they keep giving me the same foams that irritate me and make me worse.
Posted 6/14/2015 12:57 PM (GMT 0)
The trial-and-error process of treating uc is very frustrating for us all. I know I cursed my colon repeatedly when flaring badly, and now I'm in remission. Just the ups and downs of uc.

How often are you flaring, and returning to steroid foams? If it's often then your uc maintenance medications aren't sufficient..
Posted 6/14/2015 1:00 PM (GMT 0)
How can we give an opinion without a lot more information?
-How long you've had proctitis
-what Rx meds you've tried and what results

Here's what I read:
You've been dealing with very bad symptoms for 3 weeks and are intolerant of pred foam.

It's your decision. I've gone a lot longer with very bad symptoms without being near thinking of surgery. But that's me, not you.
Posted 6/14/2015 1:30 PM (GMT 0)
I agree with Imagardener. You really haven't given us enough information to give you any good advice. It sounds to me like you're jumping into surgery way to early. You do know that with surgery, they take out your ENTIRE colon, even the part where your UP hasn't spread? They don't just take out the proctitus area only. Only an idiot doctor would suggest that.
Posted 6/14/2015 4:10 PM (GMT 0)
Hi
I am from the UK and was first diagnosed with Proctitis 3 years ago but now have proctosigmoiditis as it has spread a little higher.

My consultant has said that they never do surgery for proctitis. There are many medications to try; its just finding the right one for you.

I see from your other posts that you take 1500mg of oral mesalazine. This isn't even a maintenance dose. For mezavant the dose when flaring is 3600mg to 4800mg a day and the maintenance dose is 2400mg. It could be that you need a higher dose and maybe change to a different brand.

I have been in remission for the last 18 months the longest yet. My last flare lasted for 6 months until I started the enemas. I take mezavant 2400mg a day and use salofalk enemas every third day. These work for me. I have used other tablets, predfoam and been on prednisolone until I tried what I use now. The predfoam made me worse so did basalazide oral tablets.

I still go to the toilet 2-3 times a day but it is non urgent and usually twice first thing and sometimes once in the evening. Hopefully this will be all I need but there are steroids azathioprine and then biologicals to try if needs be.

Have you had any steroids?

It is hard when you are flaring, I know, but you will get there.

Post Edited (Mad Martha) : 6/14/2015 10:57:23 AM (GMT-6)

Posted 6/14/2015 4:33 PM (GMT 0)
suebear, who posts here, had surgery for proctitis. She got a jpouch and she's done amazingly well. Surgery is a huge risk and it's not an easy procedure, it takes a long time to heal from each step. Most people try to avoid it, especially if there are medical options they can try. I don't think there is anything wrong with having surgery for proctitis, but I don't know if I would rush into it if you haven't tried the medical options. Although the surgery sounds like "oh you have a bag for a short time and then things are great", it's not that easy. There are various levels of results. After surgery you will go to the bathroom 4+x a day. Many people go 6x, some go 10x+. It is not like going with a colon, people say they go when they pee and it's almost like peeing, you just release the contents of the pouch but 10x is a lot if you're one of the people who go that often or more. There really aren't any guarantees with surgery. Risk of nerve damage or chronic proctitis, reduced fertility... Some people end up losing the pouch and end up with an ileo so it's something to be aware of though it probably happens in 5% or less cases.
Posted 6/14/2015 9:26 PM (GMT 0)
I wouldn't go for surgery yet. One of the reasons to do surgery is that when colitis is throughout the colon, there can be increased risk of colon cancer. With proctitis, the risk just isn't there. I would think and hope that with the right meds at the right doses, you could get back into remission. It may take some time, but I believe it's very probable.
Posted 6/15/2015 1:58 AM (GMT 0)
Yes, I had jpouch surgery for proctitis. I had an ulcer the size of a dime in my rectum that gave me two years of hell and a severe flare. I opted for surgery 14 years ago.

Sue
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