Procticis & surgery

I was wondering if there is specific surgery for proctitis or the only surgery possible is to remove the total colon ?

I've been flaring for more than a year. I'm taking 2 Salofalk enema a day as well as 2 supository. I had some improvement but It does not last... I will see my GI again in mid-January. I will insiste into getting Salofalk pills even though she keeps on telling me it will not help. But if it does work... There is no way I want to go on stronger meds.... The symptoms from them seems too difficult for me to deal with, Joint pain, tiressness, migraines and so on...

So I was wondering why could I just not have the part of the colons that isn't well removed and reconstruc with what is left ?

i think the surgery is technically possible. it is done for colon cancer and for perforations and such.

I think if you look at early attempts to treat UC with partial colonectomy, that the reoccurence rate was very high, and the standard of care became the full colonectomy.

if there was no insurance or national healthcare involved, you might be able to find a surgeon to do a partial for UC

suebear had only proctitis and had to have her whole colon removed. She always pops in and says how much of a positive change it was for her. They do not do resections for UC. It will come back in another portion of the colon in many cases. Removing the colon eliminates the UC altogether.

Mais oui, cette maladie est difficile à traiter. Maybe, someday, there will be a better way of dealing with proctitis, but at least try to take the oral medication before you consider partial surgery.

For sure before considering any surgery I will take the oral meds. This time I will not let my GI tells me it won't help. I'm the patient here and I sure have the right to try what I want.

I would not want to have an ostomy... I would prefer a J-Pouch. It sounds weird but my worse fear about an ostomy would be that you can not go,swim. Can you do stuff like go into the pool, the hot tub and into the see ? Just curious.

Chantrelle99 said...
I thought that in case like my when the average affected area was around 15 cm and at the most 20 cm it could have been possible.

In 25 years it never when up more than 20 cm. I just cannot believe how much problems proctis can be.

What worries me the more is the "I have too run to the bathroom trips " My warning time is getting shorter.. And I have been having some little accidents. Thanks God it was at home before going to work.

Any way Thank you for the input. Now I know it is Possible To have this done but there are a lot of chances that I would be free from relaps for a long time.

You would not want to live with the quality of life you would have if you ever found a surgeon to only resect the affected part of your colon. You would essentially be removing the entire rectum, which is the part of the colon that makes continence possible. Your stool might be formed, but you would have no ability to hold it for more than a few seconds, maybe minutes. It's true that we don't need our entire colons, and someone with Crohn's or cancer can have a large amount of the colon resected and still have basically normal bowel movements, but you NEED your rectum (or, failing that, a replacement like a j-pouch).

If you do find a surgeon willing to do a partial colectomy, let us know, because I will be VERY surprised and VERY suspicious.

As long as you know the risks, its your body so do what you want, just make sure you FULLY understand the risks, thats all.

Chantrelle99- I copied and pasted this....hope it helps explain some things:


An overview of pouch surgery by Linda B Hurd

Kegel Exercises
exercises to increase anal muscle strength

Grace's Corner (Frequently asked questions)

Illustrations



An Overview of Ileoanal Reservoir (Pouch) Surgery

Linda B. Hurd, RN, MSN



The ileoanal reservoir procedure is a surgical treatment option for chronic ulcerative colitis, colon cancer and familial polyposis patients who need to have their large intestine (colon) removed. An ileoanal reservoir (or pouch) is an internal pouch formed of small intestine. This pouch provides a storage place for stool in the absence of the large intestine. Anal sphincter muscles assist in holding in the stool. Several times a day, stool is passed through the anus.


Ileoanal reservoir surgery is a widely accepted surgical treatment for ulcerative colitis or familial polyposis because it eliminates the disease, gives the patient control of bowel movements and does not require a permanent ileostomy. Each patient considering this surgery is carefully evaluated to determine if this procedure is appropriate for them. This procedure is performed in one, two or three stages, but is most often done in two stages, usually 2-3 months apart.
Stage I:



The first surgery removes the entire large bowel and the lining of the rectum, but leaves the rectal muscle intact. A reservoir or "pouch" is made out of small intestine and then is connected to the anus. Next, a temporary ileostomy is made. An ileostomy is a surgically created opening between the small bowel and the skin of the abdomen through which stool and gas are passed. This temporary ileostomy diverts the stool; protecting the reservoir (pouch)while it heals. (See figures 1, 2 and 3)
What to expect after the first surgery:



In the initial weeks after surgery, waste material coming through the ileostomy is liquid but then begins to thicken. A good diet with increased fluid intake is needed to keep well hydrated and nourished. Patients wear an ileostomy appliance over the ileostomy that collects the waste as it passes through the ostomy (or opening) on the abdomen. Learning to care for the ileostomy is a little tricky but with practice becomes very manageable. Patients also may occasionally pass small amounts of mucus or blood through the rectum.


Approximately four to six weeks after the first surgery, an x-ray study of the pouch is performed. If the study shows that the pouch is healed, then the second surgery can be scheduled.
Stage II:



The second surgery (usually done 2-3 months after the first) "takes down" or removes the ileostomy and reconnects the bowel. The pouch now becomes functional so that waste passes into the pouch, where it is stored. When an "urge" is felt, the stool can be passed through the anus, out of the body.


In most cases, the second surgery can be done at the ileostomy site without re-opening the first incision. The skin at the former ileostomy site is usually left to close on its own. (See figure 4)
What to expect after the second surgery:



Once a patient starts passing stool through the anus, stools are frequent and liquid. There may be accompanying urgency and leakage of stool. All of these aspects improve over time as the anal sphincter muscles strengthen and the pouch adapts to its new function. Stools become thicker as the small intestine absorbs more water. In addition, medications to decrease bowel activity and bulk-forming agents to thicken the stool may be prescribed.


Patients can help during this adaptation process by avoiding foods that may cause gas, diarrhea and anal irritation. Careful skin care around the anus will protect the skin from the irritation of frequent stools. Continuing anal sphincter muscles exercises (Kegel Exercises) during this time is also beneficial.


After six months, most people can expect about five to six semi-formed bowel movements during the day and one at night. The pouch takes up to one year to fully adapt. In most patients, functioning of the pouch continues to improve over time.
General Considerations:



When considering and undergoing this surgery, all patients and their loved ones have concerns and questions. Sometimes they feel isolated and frightened. It is helpful for all involved to receive general information about this surgery and understand what to expect during the course of these procedures. In addition, patients and family members may be interested in contacting an ileoanal support group, which provides a place to learn more about this surgery and to meet others with similar concerns and experiences. Be sure to talk with your gastroenterologist, surgeon or ET nurse about these issues and keep in close contact with them during the surgeries and throughout the rehabilitation process. Patient satisfaction with this surgery is high and with both ulcerative colitis and familial polyposis patients, their disease is cured!

NSSG - omfg I love you! You have gotten so knowledgable.... LOVE IT!!

As for the OP - I agree that you should be suspicious if you found a surgeon willing to do a partial removal for UC. It's rarely done... and I doubt not in the US at all.

As for what's removed... with a jpouch you keep your anus and a rectal cuff, so that the internal pouch created from your small intestines is ready, you can hook it back up to the rectal ruff (having preserved both the internal and external sphincter muscles) and have the ability to "hold it."

My UC was throughout my colon. I had Step 1 of 3 and had most of my colon removed and an end ileostomy created. I love my ileostomy. A couple weeks after surgery my remaining bit of sigmoid colon and my whole rectum were severely diseased and continued to cause me problems. I chose to have the rest of the colon and the rectum completely removed... meaning no internal sphincter muscles... so possible chance to get "hooked back up" and had my anus sewn shut.

It's all about quality of life.
It sucks that enemas and suppositories aren't helping, especially since your disease is confined to one area.... but it is obviously getting more severe over the years if you are now having close calls and accidents.

The addition of the Oral meds may help. But if not, you have to weigh your options. Most people try immunosupressive medications and biological medications before having surgery. I know when I first came on this board I told a fellow poster that I would rather have a poop bag then ever try something like Remicade (I have a severe needle phobia, so IV infusions did NOT sound fun.) I ended up trying exactly that medication before my surgery, lol. It didn't help sadly, but I am so glad I tried! I did not have any reaction or side effects from it. Many people get help by adding the next step of drugs, so oral, immunosupressive, biologics.... usually in that order. Depending on the severity sometimes you skip right to a biologic as immunosupressives tend to take a while to start working.