Hi All....

So I have been reading on here for a little bit and I am different from you, but facing possibly the same surgery as many of you have had or are having on the future. A little bit about me, I have not had UC or Chrons, but quite the opposite. I have had horrible constipation for nine years and after a second opinion in 2007 I was diagnosed with colonic inertia ( no movement of colon) and had a total colectomy with connection of my sm intestine to rectum. I had a rough recover y with multiple complications, but after four months was back to work as a nurse. I did well for three months and as soon as my diet regained normalcy, my bowel movents came to a quick halt. I had testing done to r/o strictures or narrowing of my connection, but all looked good. I was sent to have biofeedback physical therapy of the rectum and this was when I was diagnosed with suspected anismus ( no ability of rectum to relax). I continued the threapy for 3 months with no improvement. I then tried 7 botox injections into the rectal muscle in hopes to paralyze the muscle. This too, was unsuccessful. My colorectal surgeon mentioned that an ileostomy was my only hope to feel relief, but wanted me to see dr. Chey at Univ of Michigan for a second opinion. I saw him March 30 and after a two hour consultation and 100th rectal exam he said I have no function of my rectum and there is no ability to relax at all. He did not want to talk surgery right away, but said that besides more physical therapy to retrain the muscle (only effective in 60% of people)that surgery is my only option.

I am not very excited about having to go through 2 more months of physical therapy with an at home machine for 2 more months. It did not work in three months and I know it will not work this time, but I will do what they say. I found the k-pouch info while researching ileostomies. I was amazed at the idea and stared getting in contact with my surgeon and hospitals who perfom the surgery and both seem to think without hesitation that I would be a candiate for the k-pouch. I will not make any decisions for the next 2 months and I go back to U of M June 8. I have read good and bad about the surgery and just wondered what you all think and if any of you have any regrets? How was the surgery? How long are you in the hospital typically? How is the recovery? I had such a hard recovery with the first that I am very nervous to go under again, but I also want my life back.

I am up to 20 oz of laxative ( milk of mag) a week....have potassium deficiencies, have lost 10 lbs since January, on a soft diet, can only tolerate about 700 cal a day and have become very painful due to my sm intestine being so full and backed up. Right now I am only able to pass liquid and its very drustrating the way I have to live. I am hoping you can all give me some insight to this surgery....I am trying to avoid the ileostomy if I can. Also, I love in Michigan and the closest place it seems is Cleveland Clinic. Have any of you sone there or know how to get a hold of somone there to get mor einformation?

Sorry for lengthy email.

Lizzie

Hi Lizzie, I have had no regrets. I've had both and am grateful for my kpouch.

Kock pouch and/or an ileostomy conversion are both are major surgeries requiring hospitalization for 5 days or so. And, recovery is pretty much the same.

The difference for the kpouch is the strict aftercare instructions for 3 weeks as your pouch matures in size. You'll be on a soft food diet. The catheter remains intact and attached to a leg beg that you'll insert with a syringe of water every 2 hours, then every 3, etc. for 3 weeks. After that, you empty less frequently till 6 weeks and then empty as needed (usually four times a day avg.).

If you haven't already, I do suggest reading through these posts - alot of newbies and oldtimers with there experiences are posted.

Best to you!!

Hi LizzieAnn: I'm replying because (1) I was once dx'd with IBS along with UC at Johns Hopkins (don't know how they can co-exist, but I guess they can); (2) I'm happy with my k-pouch; (3) I have plenty of experience with the Cleveland Clinic, having my k-pouch constructed there and, 3 years later, having hernia and gall bladder surgery there too.

I don't think Dr. Fazio, who performed my surgeries, still operates, but I've heard that he still consults, and CC can do consultations from afar, either on-line or by telephone. Also, there are two surgeons there trained by Dr. Fazio who do make k-pouches. Their names are included in this section of the site (I think they are drs. remzi and dietz).

I'm happy with my k-pouch and CC is an excellent place to investigate. You can PM me with any questions.

Thanks for you replies. I was just in the hospital the last two days with a small bowel obstruction/ileus. I still do not feel well and think I may have left the hospital too early. I have read a lot of promising stuf fon this website. I am scared for another surgery, but need to get my life back. My surgeon came to see me in hospital yesterday and he mentioned the k-pouch and he said CC and Mayo were the closest. He thought one of his colleagues may do it here, but he was not sure and he also mentioned the sacral nerve stimulation for me? Its like apacemaker with wires attached to your sacral nevers. Not sure what to do at this point. Just cannot live like this anymore.

hope ur all well.

Lizzie

Hi Lizzie, my understanding from an ET nurse at Mayo in MN is that they do not perform the kpouch anymore. If your doctors find a surgeon that is performing it there, please let us know, we'll at them to our surgeons list. But, CC is still performing it.

Seems like your drs are trying everything possible - it takes time and is frustrating, hang in there.