CC appointment and surgery scheduled

Dr Hull's right: the better shape you're in, the easier the surgery will be. I don't know how common cuffitis is, but I've had occasional joint pain (usually in my hands) since my colectomy. It's been too mild to bother me, so I take no meds for it. Good luck!

I read the chances were something like 4% and I have chronic cuffitis. Some one needs to be in the 4%... If I were you I would discuss the severity of your UC in your lower rectum and the operating procedure your surgeon is going to perform. There is a procedure where they scrape the mucosa off of the portion of the rectum that remains at the rectal cuff and hand sew the j-pouch to the rectal stump. This is called the hand sewn procedure, which is rare these days. The other procedure 1-2 cm of your rectum is left at your cuff and the j-pouch is attached there, it is called the double stapled procedure. This procedure is supposed to insure greater continence going forward.

There are also open vs laparoscopic surgeries. If possible get a laparoscopic as it doesn't cause as much scar tissue and internal adhesions plus the recovery is quicker.

Best of Luck!

Thank you, I appreciate both replies. It was explained to me that a small portion would be left behind and could still cause me trouble. This is all overwhelming.

I had UC for only 2 years, but was going down hill fast thus had the 3 stage surgery. The UC was most severe in my rectum, sigmoid and descending colon. The take down surgery was in April of this year and I have had pouchitis and cuffitis the entire time. I am one of the unlucky that the cuffitis appears chronic. After my first surgery I felt great since the diseased colon was gone. My knee pain was no longer chronic and I enjoyed the freedom of leaving the house, travel and eating more diverse foods. After my 3 surgery, which has been the last 6 months, my freedom to live is not as great at it was with the end ileostomy. I am 41 years old and was super active. I am seriously considering going back to the end ileostomy for the rest of my life. This is due to the chronic mild pouchitis and moderate cuffitis. I had the stapled procedure, not hand sewn, at Cleveland Clinic. I suggest you write down how you want to live your life (work, travel, food, need of a bathroom), see how the end ileostomy works (result of stage 1 surgery), have a serious discussion with your GI & surgeon plus consult other doctors about pouch and cuff risks. Then decide if you want a permanent end ileostomy (they go in and removed the rectal stump) or give the j pouch a shot. Read and ask direct questions and be honest to yourself regarding how you eat and what you want to do. There are belts to help support and conceal the ileostomy bags. One example is the "stealth belt". Good luck.

Thanks Fishon for your honesty. My UC is the same as yours. I get the extraterrestrial problems with joints, eye and skin inflammation. Trying to weigh out if it's all going to be worth it. I'm not mentally ready for a permanent illeostomy. But I've been pretty healthy the past 8 yrs and reality hasn't hit me yet.

My joint pain went away after surgery. However, the joint pain could have been caused by the medication I was on.

I have a friend that had the hand sewn procedure because of the severity of her UC in her rectum and she has had no problems with incontinence, no cuffitis and can eat whatever she wants. Her pouch is over 10 years old. You are going to CC. You should be able to get that procedure done there. It is a rarely performed procedure but it might be needed in your case.

I still would go for the j-pouch if I had it to do all over again. My cuffitis is now mostly under control with Canasa suppositories and I still have other pain problems. I also have ongoing other autoimmune problems which I think contribute to my pain, such as fibromyalgia. Removing my colon did not help my other autoimmune problems, like my dry eye, GERD, neuropathy, fibromyalgia, thyroid etc. Many people have multiple autoimmune problems once they get one, so removing my colon didn't solve all of my problems, in fact some of my other problems got worse.

It's a lot to take in and it is hard to make a decision when you are choosing between choices that you don't want to do at all. It is always better to choose between several good things than to choose between the lessor of surgeries that are forever going to change you. You will never get back to normal coloned person again but you have been struggling for years with every medication conceivable so you haven't been normal for a long time. Hopefully you will feel better after you recover from your surgeries than you do now.

I wish you well as you make this difficult decision.

I need to see if I can have it hand sewn. It was explained to me that it would be stapled. Ha-I feel like I'm putting in a special order. Lol

The double stapled procedure is the first choice, since it tends to give better results. For the subset that struggle with cuffitis, pouch advancement is sometimes suggested. I don't think the fear of one bad possibiity (uncontrolled cuffitis) is the best way to choose a technique, but there may be room to discuss it with the surgeon.

I guess since most of my problems are in the rectum and sigmoid colon that I will suffer with cuffitis. When I flare my rectum hurts so bad. I haven't talked about this so don't know if all UC suffer with it? Because I feel like it's just me.

Subrew, When I had my colon my rectum would hurt so badly the only thing that really helped was a sitz bath of warm water. Tylenol would not even dent the pain. I think the hand sewn pouches may have a slightly greater chance of leaking, but double check. My wife and I now wonder if there is information out there regarding location & severity of UC in relation to cuffitis issues & severity of plus resolution. Hind sight. Due your due diligence, but don't over think yourself into inaction. I just had my eyes examined and have very minor cataract "growth" in my right eye and the doctor said this is the location of the lens that is impacted by steroid use. It should not increase unless I eat more steroids. This is sort of a bummer because I hunt and shoot right handed. Oh well. Good luck. They will tell you at the Cleveland Clinic to get up and walk around as soon as you can . . . do it even though it is tough getting out of bed. The recovery floor is full of GI surgery patients so I was nice to feel part of a group of walkers with IV poles.

Fishon, if it helps you any. I've had cataract surgery in both of my eyes and I see GREAT!! I wish I had it sooner. No glasses nor contacts. I appreciated your replies. Thank you

I don't think anyone should assume they will get cuffitis based on them having UC in their rectum. I believe most of us had UC in the rectum as that is one of the most common places it starts.

I believe doctors look at the pathology of your UC and other factors when determining what kind of surgery to perform. The reason why the double stapled procedure is the most common is because it is the "most successful" and as I said before I probably would have still had the same surgery all over again. I would not have assumed I would be one of the 4% with cuffitis.

My UC was controlled my Asacol for years and the ingredient in asacol, mesalamine is controlling my cuffitis, in the form of canasa. Do I like it?? NO!! These are the cards I have been dealt and I'd much rather have cuffitis and have to treat it than have a permanent ostomy. If I couldn't control the cuffitis I would go to an ostomy. It is good to have that option but I don't need it.

Please don't go into the surgeries expecting bad outcomes. It is good to go into the surgeries knowing the possible outcomes and to discuss them with your surgeon. S/he can not guarantee that you will not have any problems and that is why you are given percentages.

The folks that post on here are those that have problems. The people that have no problems don't seek out support groups so you need to consider that. There are great people on here that no longer have many problems thathelp those that do, but mainly when people get better they drop out of the support group.

It is a BIG decision and MAJOR surgery.