scope results 3 months post takedown

people please. im dying over here. whats the point of all i went through to just end up with colitis again? can cuffitis be acute/cured or just managed? feel like im back to square one being diagnosed with colitis all over again except im beat from the many years of fighting this miserable disease...

Tom - if you do a search on cuffitis here you will gets lots of results, information, and courses of actions for different individuals. I'm surprised that you were scoped and given a diagnosis of cuffitis without any further information. If that's the case, you need to call your doctor and get clarification about how you should start proceeding from this point forward.

kathy

Tom-at least you have an answer as to why you aren't feeling good. I believe cuffitis is UC of the rectal cuff (just the 1-2 cm that's left) You will see on this forum a range of outcomes with treating cuffitis. Ideally you will be able to knock it out with Canasa suppositories or a steroidal enema or a combination of of rectal meds. In the most severe cases and hopefully you won't fall into this category a pouch advancement would be recommended. I know a j poucher who uses a Canasa every night and is totally fine and keeps the cuffitis under control with that. Good luck and I hope you get the relief you deserve soon.

kathy,
i was asking for advice from people who have been through it. i have all the info from my doc but i know for sure some of my docs are overly optimistic with their patients for good reason so as not to put negative thoughts in our heads. while i appreciate that i would really like for this thread to be sort of the equivalent of the real world when it comes to what i was just diagnosed with. i can do a search but i want to interact directly with you guys about my very new and scary find.

randi,
thank you for your reply. im trying to find ways to be hopeful because yes i am glad to find out im not nuts and something definitely was wrong out the gate or soon after but when i search on here most of it seems frightening and i dont want to go there yet...

Me, me. I have/had chronic cuffitis. But, it never really made me so miserable that I was coming unglued. In some ways I wish it had and maybe I would have pushed for treatment sooner. As it was, I putzed around with it for about 4 years before I decided I could have better function. A few weeks of Canasa (mesalamine) suppositories, and I was improved. A couple of months and I was ready to switch to Azulfidine for maintenance. Fast forward 13 years and I now just have the occasional minor flare and use Canasa for a few days and back to normal. However, in the meantime, I was diagnosed with enteropathic arthritis and put on biologics (Enbrel, Humira, and now Simponi). I think that REALLY took care of my cuffitis.

Bottom line, I do not feel like I have been cheated or had a colectomy for nothing. That bad boy had to come out regardless.

Yes, cuffitis can be treated and most people respond well to hydrocortisone or mesalamine suppositories.

But, what was the deal with the hard lump? That certainly is not cuffitis?!?

Jan

Tom, cuffitis is fairly common and generally responds to treatment. I recall asking you quite awhile ago if you had been scoped after your takedown. As i felt that definitely something was going on with all of your problems. Shame on your doc for not scoping you sooner.
Anyways ..for me my cuffitis was treated i think with steroid enemas or rowasa. I dont remember. But i also had permanant pouchitis. The cuffitis resolved rather quickly about in one week. But i had to also do periodic canasa suppositories when i thought it was coming back.

Like i said for most cases cuffitis is easily treatable. Even if you had to do canasas for life..its not that big of a deal. So start those steroid enemas tonight .. and give it a week or so. You should be functioning a lot better after that.
Good luck.

thanks guys. it wasnt my docs fault as i thought it was normal recovery and didnt share everything with him. hes my new doc btw as we moved here from florida and the last time i saw him a hemorrhoid made things even more confusing.

jan, the lump was a hemorrhoid that appeared behind a fading one and faded quickly thank god.

anyways, i have 2 products available to me. hydrocortisone suppositories and proctofoam which is very difficult to use. would either work for this.

my only other concern is if i do need a maintenance drug would i be in trouble if i cant use mesalamine? i reacted badly once with full blown pancreatitis so its not an option for me.

Looks like your doc wanted you to start with the proctofoam. So go with that and do it diligently.
I wouldnt even think about maintenance needs. Like i said, most cases are easily treatable. And you may have this cuffitis tackled real quickly.

Tom,

Cuffitis is not a 'scary' find. It's treatable and manageable.

Sue

actually i think he wanted to start me on hydro before the scope when my fading hemorrhoid didnt give me relief. he said start on these til i can scope you next week and talked about pouchitis and cuffitiis or a fissure but i stopped it thinking it was causing me constipation. im not so sure that was the problem so tonight i'd rather try that again rather than the proctofoam that needs an 8 part direction sheet to use properly...

thank you sue, this whole thing has me upside down. i was a person so used to controlling my life or so i thought and this has taken every ounce of control away from me...

Hydrocortisone suppositories are typically prescribed. Proctofoam is more for pouchitis, but sometimes they use it at least initially for cuffitis, because of the pain some people have inserting suppositories. So, either is fine. Once you are in remission, you just taper back to whatever frequency keeps you in remission. Could be as little as once a week or even once a month.

By the way, hydrocortisone suppositories or cortifoam does NOT cause constipation. If you get constipated, it is coincidence and something else, like your IPS/IBS.

Part of having IBD is learning to let go of the idea that you have control. Accept what is and move on from there. You will be much happier that way.

Jan

jan, youre not kidding. i was told that by my psych a long time ago but i never really focused on it enough. i intend to start.

with cuffitis being so common are they working on a way to minimize it even more while still preserving continence?

why arent we all getting mucosectomies with our j-pouches?

this might be why.

http://www.ncbi.nlm.nih.gov/pubmed/11711729

Yep. Even though the link you provided is regarding FAP patients, not UC patients, there is the same opinion from past surgical reviews.

It is all risk vs. benefit, and the risk of poor function (incontinence mainly) is much higher than the risk of return of disease in the retained cuff. Sometimes they do have to go back and remove that cuff, but not often.

With as bad as you think cuffitis might be, irreversible incontinence is worse, and is one of the causes of pouch failure. We just have to remember that there are NO perfect surgical options. They all have some risk or trade-off we have to accept.

Jan

thanks jan, i have a question. i started the hydrocorisone suppositories last night and did my next one this morning so ill be doing 2 a day. im definitely going more frequent and urgent. is that common? or could it be a post sig scope sort of thing causing this?

Yeah, not too uncommon early on. That is why sometimes the cortifoam is better at first, as it is better tolerated with less irritation. But e HC suppositories are less irritating than the Canasa.

So, you can either switch to the cortifoam for a few days anyway, or stick it out with the HC suppositories.

If this doesn't work (give it some time), your doc can inject steroids locally. I would keep up with sitz baths or whatever makes you more comfortable during this healing phase. Some people even resort to sitting on a heating pad! Whatever floats your boat and gets you through the day...

Jan

can a pouch scope cause increased rectal pain?

Sure. It is invasive, and if you are inflamed already, it can add to the trauma. That is why they don't just go in there on a whim.

Jan

Tom,

I'm not on much anymore so just saw your post. Cuffitis is relatively common early on in UC patients. Try not to worry too much.

I had it shortly after takedown as well. I was on hydrocortisone suppositories for a few months until all the inflammation went away. It has come back a few times since, but I understand the symptoms better now and can get on medication before it gets too bad. Like others have said in most cases is it easy to treat. I am proof of that.

most drs do not do mucosectomes anymore because they find they get better results hooking up with a cuff..and because cuffitis and pouchitis for that matter or other difficulties only effects about 10 to 15 per cent of jpouch patients..

I always look at it like this: if I still had my colon, imagine how sick I'd feel with this inflammation throughout the whole colon, rather than just a cm. or 2. Well, no need to imagine - 20+ years later I can still remember. So, glad the colon is gone. Not that there was a choice ...

I keep cuffitis under control with 3 canasas per week. I've also used hydrocortisone suppositories per Dr. Shen when the canasa just didn't do the job. In my experience, the HC suppositories did "thicken" things up a bit - a plus - which was the goal, due to a fistula.

Good luck, Tom.

Woohoo! I am very excited for you Tom! You finally have a diagnosis and can start kicking its butt!

I look forward to your future posts.