Indiana Pouch Trouble - Help Please

[wildemom]

I am new to this site and have enjoyed reading all of your posts. It is nice to see that I am not alone.

I have had my Indiana Pouch for 10 years. Yes I had some of the same problems all of you are speaking of. Mild leakage in the beginning, excess mucus production (controlled by irrigation 3x's per day w/180 cc saline).

I am writing because I have developed many problems with my pouch and am having a problem locating a physician in my area (I travel to Mayo Clinic in Rochester. Since I live in NC it is very expensive). Ok, here are the problems:

-Metabolic Acidosis
-Vitamin D deficiency
-Osteoporosis secondary to Metabolic Acidosis
-Spleenomegally
-3 large Hernia repairs (along the incision)
-2 fistula repairs
-Scarring of the Efferent Limb (or possibly a kink)
-Hernia near the stoma
-Chronic Pain Syndrome (I woke up from a hernia repair in pain and have not stopped since. It has been 4 years now) All pain is in the kidney and I have films that show hydronephrosis intermittently. However, most of the doctors are not attributing my pain to that.

-Lately my pouch has been blocking and not able to drain. I have had 1.5 liters pulled off in the ER That is about 2500cc!
- their solution to the blockage issue is to put in a suprapubic catheter (permanently). This was done with no anestesia and just increased my pain enormously

I have been told I can have no more surgeries as there is a great possibility I will not come out of it or they won't have enough tissue to close with. I have also been told that I do not
have enough intestine to remove the pouch and come up with something external.

Has anyone had these kinds of problems? Any suggestions? I can not stand the SP tube it basically hurts on a "6" out of 10 all the time. I can't do anything. I feel like it has ruined
my life. I do not want this SP catheter for ever. I have only had it for 30 days and I am miserable. At this point I am willing to go back to visiting the ER every 4th day due to
blockage. At least then I had somewhat of a life.

Sorry for such negativity, however, I loved my pouch and now things are not looking good. Any advice you have to offer would be greatly appreciated.

[squid56]

I got my Indiana pouch in 1992 and while I still have issues of leaking as well as spasms in the pouch I still love it. I have Vit D deficiency as well as B-12 deficiency and a chronic problem with Low potassium as well as a few other things. I now see a nephrologist because I also have some kidney function loss as well as stones. Have you ever consulted a nephrologist for the kidney pains? I also have osteopenia, but I think it is due to family history and my age (55). I am curious as to why they just didnt put in a Foley catheter in your pouch and leave it there? This way you can still irrigate it if it gets blocked. I highly suggest you get other opinions from urologists near you. Call Mayo and see if they can suggest anyone or ask your PCP.

[wildemom]

We did that for 30 days prior to the SP tube the hernia/scarring/kink in the limb blocked the foley as well. It even made it so we could not put the catheter in.
Thank you for recommending the nephrologist. I will get on that and make sure I get the referral. I to have loss of kidney function (rt kidney = 25% Lt kidney = 75%) Left kidney has lost 20% in one year duet o the hydronephrosis and chronic infections. Oh! I have also had the potassium issue that resolved when we fixed the infections (however, when I get the super bad cramping in my arms legs and neck I know it has returned).

Thanks for your suggestions. It has helped tremendously just knowing there are others out there!

[Curlygrandma]

I've had my Indy pouch 16 yrs. & done well except for occasional infections & bowel obstructions due to a lg. peristomal hernia with trapped bowel which was wrapped around the arm, & lg. incisional hernia. I went to Cleveland Clinic & Indiana U. as well as U of M for help. U of M was the only one who finally operated & fixed the mess. Not easy finding a surgeon who can fix incisional hernias. I'm sorry your experience has been so complex. Don't give up searching for an answer. I have a friend who didn't do well with her Indiana pouch. She went to Dr. Birhle at Indiana U & he removed it & gave her an ileal loop. She had a bad time for awhile, but is now doing very well. Indiana U prides itself on being the place of origin for the pouch. BV

[gpgscott]

Wow,

You are the poster child for neglect of a continent diversion.

Not saying it is all on you, but it is your body and you really needed to take control long before your situation became so problomatic.

The metabolic issues are well understood and are easy to manage but the resulting issues are hard to get under control when allowed to run rampant for years.

It appears from your posting that you are dissatisfied with the Drs. approach and are asking the group for alternatives.

My advice is to find a Dr. you have trust in and follow the treatment path the Dr. recommends.

Your life depends upon it.

Best. Scott