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J Pouch

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Wed Dec 12, 2018 8:32 pm

After having anal cancer in 2014. I have had fecal incontinence from pelvic radiation. I had the Medtronic Interstim device for 3 years with very little improvement! I had it removed and my surgeon suggested I get an Ostomy until something better came on the market for incontinence. I did that because I was told I could have it reversed! After the surgery now 6 months ago, I hate it bc my stoma is flush with my belly and leaks daily! 5 weeks after my ostomy surgery (at the Cleveland Clinic in S. Florida mind you) my Stoma died on the vine so to speak and I had to have emergency surgery to have the necrotic tissue removed, leaving me with a flush stoma and HORRIBLE leakage!!!! 

So, I asked my surgeon to reverse it and she said OHHHHH I wouldn't do that! because your incontinence will be WORSE than it was before!!!!! Did she tell me that before I agreed to have a TEMPORARY ostomy????? NO NO NO!!! 

So, a reversal is out and I'm not a candidate for Irrigation (bc after pelvic radiation it slows your bowels down!)

So, my new GI doctor says why don't you check into a J Pouch? I tell my surgeon at CC about the J Pouch suggestion and she goes off the rails about how that is not an option!!!

My GI doc (that I really trust!!) suggests I find a Irritable Bowel Disease Surgeon at the CC....which would be super awkward to go over my Colorectal Surgeon! 

I live in the Clearwater/ Tampa area and he doesn't reccomend anyone in this area and to go back to Miami or another major metropolitan area!!!

If anyone out there has any comments or suggestions I would REALLY appreciate it! Thank you, Kathy

 

Wed Dec 12, 2018 9:26 pm

i would ditch the colorectal surgeon and find another .sadly,  there are people out there who are imcompetent. i can reccomend a very good surgeon but he is located at vanderbilt hospital in nashville.  i went to 4 surgeons before i chose him, and i think it was a wise decision to wait till i found someone i was comfortable with. did you research your current surgeon online ??  i hope you find a resolution, i can only imagine what you are going through. good luck

Wed Dec 12, 2018 9:28 pm

Wow Kathy, 

You have had some bad advise that took things from bad to worse! I am so sorry! But I do irrigate and I had cervical cancer 11 years ago and am fixing to have it again to a lymph node in my groin that is metastatic from the recital tumor or Neuroendrocrine small cell cancer. No one has mentioned that could not irrigate and it has not been an issue having a Colostomy! Guess I will ask that question though. I would not want to stop because it has brought some normalcy back to my life! 

Hope you can find someone you trust! Do not feel bad about changing doctors, even in the same practice! It happens all the time and they understand! You HAVE to have someone you trust so do what right for you, the hell with the ego of a doctor you don’t trust anyway!

Puppyluv

Thu Dec 13, 2018 1:32 am

Hello Kathy.  Sorry to hear that you are having these sorts of problems.  You have had some good advice above. Seek out a good doctor as many simply don't know what they are talking about in this field. My own thoughts swing to what has been said about slow bowel movements. I have this sort of problem which makes irrigation take longer (that's all"!). In the past, I have also been prescribed medication to help the peristalsis work better. This was actually for my oesophagus problems but it worked further down the system as well.  I don't take it now but it worked at the time. It was called Domperidone.

Best wishes

Bill 

Sat Dec 15, 2018 1:33 pm

I have an idea for the flush stoma. Coloplast now has Convex barriers in 3 strengths, soft, light, and full ( not sure I'm using the right terms, I use a light one) The strongest one is for stomas that are actually below the skin line. I'm 10 yrs post surgery, and I don't have any real issues now. I do have to say my GI DR first sent me to a general surgeon, who prescribed a partial ostomy because when he looked at my results he told me I had no cancer and that this would be fine. I've done research for a long time and what he said didn't sound right. I went for a 2nd opinion to a DR that only does rectal and colon surgeries. And he was really upset about the general surgeon and said he shouldn't be practicing! My results DID show severe dysplasia, which is almost cancer. I went with the colon specialist, and they did find stage 2 cancer once they opened me up. I didn't need chemo or radiation. If I had listened to the first DR, I would have needed a second surgery. I am in S. Florida, also. I was at Winterhaven hospital. My DR is at the Gessler Clinic. I do know that my DR probably wouldn't suggest a reversal, either. When I had my surgery, he gave me 2 choices, one with a reversal and one not. I went with not having a reversal and having my rectum removed, and after finding cancer I would have ended up with that anyway. I do have to say that I now have no pain, no bathroom urgencies, and my ileostomy doesn't bother me at all and compared to what I was like before and after surgery, I wouldn't have a reversal myself.

Tue Jan 01, 2019 3:57 pm

Hi KathyMac 423! First I’m sorry to hear that you had anal cancer and hope you are in complete remission. What I don’t understand is if you have a colostomy or ileostomy? If it’s an ileostomy I would look into the possibility of having a BCIR at the Palms of Pasadena hospital in St. Petersburg, FL. There is a Dr. Rehnke who does the surgeries and it a real gentleman. Just a possible option. Hope it gets better.

Thu Jan 10, 2019 9:30 am

KathyMac 423--This is out of the box, but as you are in florida, have you researched the BCIR operation done at Palms of Pasadena in St Petersburg, florida.  Their surgical procedure is a specialized procedure that not many surgeons are capable of performing.  I have NOT had the procedure done, as I have other issues, but the research on the procedure is given freely, and if you contact them you will receive a CD/DVD explaining the procedure. I don't know if this surgery is applicable for your particular situation, but they are more than willing to help you figure that out.   Just another alternative....

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