Hello Folks!

I've posted on here a few times and took your advice and have been to see 3 colo rectal specialists. Here are the results...

Local Specialist - Doesnt know if he can do a pouch or me or not. Bases this on a failed ileostomy that caused me to lose about a foot of small intestine. He recommends opening me up and if he can do a pouch he will if not I'll awake with a permanent ileostomy and this huge abdominal wound I have will be closed.

U of M - This specialist told me I should be grateful just to be alive after the colon 'explosion' that took place. Due to my height (6'8") she does not think a j pouch is possible. The failed ileostomy figures into that decision as well as the problems I had the 1st time (coma for a month, major septic type infections that almost killed me and four month stay overall in the hospital). She recommends a permanent ileostomy and close the hernia...her fear is that the skin from the hernia will not 'peel' off my small intestines and a tear will develope or during the process my small intestine could be cut unintentionally and we lose more.

St. Josephs Mercy (colo rectal specialist who trained at the Cleveland Clinic and who has worked there). - He recommended that I just have the temp ileostomy reattached to my rectum. He did a ridgid sigmoidoscope and says my rectum is in good shape there is no need to be concerned about it deteriorating and that the chance of cancer over a 20 year period is less than 10%. He told me I could expect about 5 bowell movements a day doing it this way ( thats after 2 months of my body readjusting to pooping again) vrs 4-8 a day with the j pouch and fewer risks with the reconnect, no take down period of waiting like with the j pouch. This cleveland clinic guy also said he doubted I'd be able to have the pouch due to my height.

What do you all think? Anyone out there had the small intestine reconnected to the rectum without a pouch? I know plenty of you have the pouch but i've not heard about this procedure...help.

Thanks,

Mike

If I could give you any advice it would be to check out the Cleveland Clinic. They are in the top 3 gastro. hospitals in the world. My surgeon was Dr. Ian Lavery and he was incredible. I have since met numerous people who also had surgeries preformed by Dr. Lavery and have said the same. Hope that might help.

I would have to agree. Dr. Lavery was my surgeon as well. See if you can do one of those electronic or phone consultations.

Mike,

Here are my thoughts:

If you've lost a foot of small intestine, I'm assuming it was the bottom half or the ileum. This is really a very important part of the small bowel so you don't want to unnecessarily risk more of it if you can avoid it. If I were in your position considering your history I would choose an ileo-rectal anastomsis (IRA), which is what your consult at St. Joesph's seems to be suggesting. If I needed surgery for reasons other than cancer, I would have choosen this surgery over the J pouch considering that I had a healthy rectum.

On the plus side, you can avoid the permenant ileostomy and the function of a IRA is better than a J pouch as long as the rectum is fairly heathly. Another plus is that if it does not work out for some reason that you can still discuss options for another solution whereas when you decide permenant ileostomy, you probably don't have any other options. The IRA operation would almost certainly be a 1 step with no need for a temporary ileostomy whereas most J pouches are done in 2 steps.

The possible drawbacks would include possible return of UC to the rectum, risk of cancer in the rectum and thus need to have regular scopings. It is also possible that you will have to continue to take UC meds to keep the rectum in remission.

Something else I would like to comment on is that your height and previous loss of some small bowel does seem to make it questionable whether or not there is enough length for a surgeon to make a J pouch. There is an increased possibility that if you wanted to pursue this option that you would wake up without it being successfull due to these circumstances. If you leave it up to your surgeon to decide J pouch or perm ileostomy at the time of surgery, I'd be concerned that you would wake up with a permenant ileostomy. Whereas if you pursue an IRA, the chances are much higher that a surgeon would have the reach of small bowel needed.

I hope that whatever decision you make that the circumstances will work out for the best. It seems like you've had a bad experience so far so I'll be hoping and praying that it goes better for you this time.

Rick

I think if this were me I'd opt for the permanent (end) ileostomy. I'd be concerned about UC returning and possibly having even less small intestine to work with. I think the biggest consideration is that you don't get to the point of having too little to work with.

Good luck with your decision and I'm sorry you even have to make it.

kathy

This is a very personal decision and I know it will be difficult for you to make it, especially since you have had such a rough time of it so far.

But, since you are asking for opinions. If it were me, I'd go with the IRA. Granted, it is not generally recommended for UC because of the risk of future disease in the rectum, but in selected cases it is a reasonable alternative. Of course, you would need to continue to have periodic scopes with rectal biopsies.

Jan

Thanks for everyones feedback! I will look into the IRA...thats what I believe the doc from the cleveland clinic is recommending...thanks again!

Does anyone know what the consistency of the bowel movements are like if I have the rectum reconnected? Will it be like diarhea for the rest of my life or what? Sorry, I'd forgot to ask the doc about that last week. Was so floored by the feedback from the two specialists in Ann Arbor.

Mike

I had the IRA for 14 + years but my rectum was BAD, which is why I finally opted to convert to a j-pouch. Your stools will probably be what you consider diarhea, but it will fluctuate depending on what you eat similar to with an ostomy or j-pouch. I led a very full life during the years I had mine, even with my diseased rectum.

Given your options, it's probably worth a try and doesn't rule out something different in the future.

-Kenadi

Thanks Kenadi!

By the way it was Dr. Flanagan who brought up this option to me...thank you for suggesting him I think he is great I only wish PHP covered him

Mike

If your rectum remains relatively disease free, you should eventually have soft, semi-formed stools. The terminal ileum will change microscopically to absorb water over time, the same as it does for a j-pouch, Kock pouch, or end ileostomy. However, this process takes 6-12 months and can improve as the years go on. But, if UC flares up in your rectum, all bets are off and you are back to square one.

Probably the best option would be to let your surgeon determine if the j-pouch is possible once surgery is underway. If not, then default to the IRA. They always check for mesenteric reach before they do the rectal dissection, so you would not be dooming yourself to an ostomy if you allowed the option for the j-pouch. You just never know until you get in there.

Jan

Hi Mike,

I´m sorry for everything you been through.
I had ileo-rectal anastomsis (IRA) done 16 days ago (22. January).
I was diagnosed with UC in April 2004, had subtotal colectomy and stomy done in May 2005.
I can´t tell you how glad I´m to be bagless
Like you I don´t know many who have had this surgery but I was told it would be the best choice in my situation if it works. If I were you I would definetly try it before you go into perm ileostomy, maybe it works and everything will be great. If you have the perm ileostomy done you could regret it later to not have tried the IRA.

Please feel free to contact me, sunnevarut@gmail.com or send me personal message I would gladly tell you everything I know and keep you posted on how I´m doing.

Want to thank all of you who posted on here or to me privately...saw the specialist in Lansing, locally. We discussed what the specialists from Ann Arbor and the Cleveland Clinic told me and he was in COMPLETE AGREEMENT! He believes the best route for me if my rectum is healthy as the guy from the cleveland clinic says it is the IRA. I'm scheduled for a flexible sigmoidoscopy next Tuesday.

He was not intimidated in the least by my outside opinions nor by the studies I showed him that I found online and printed. He went over each one with me, I was really floored by this man, no hint of defensiveness in his body language, in fact he seemed enthusiastic that I went to all this and even said he wished all his patients would become this informed and not just take his word...I think I've found a great dr/surgeon in my own back yard!

Thanks again for all your help folks!

Mike
stayinalive1985@hotmail.com

Good for you! Half the battle is finding a surgeon you can trust. My husband Paul was really hesitant with some of the Drs we met with, and finally found one that was like yours-glad for the patient involvement.
He had the Jpouch done, was unable to get rid of chronic pouchitis, and it ended up failing, but he's still glad he tried. He's only 32, and would have always wondered, "What if?" It's great that you're staying informed. We did the same thing-went to the Dr's with a ton of info and questions, with duplicate copies for Dr. Vignati and Paul's chart.
That said, the end ileostomy is also very manageable, and he's got a great attitude and a beautiful stoma to match!
All the best to you!
Betsy & Paul