Older J-pouch Guy here

TRS,

I am 55 years old, have had a J pouch for 26 years, and have battled pouchitis that has been chronic for 23 years, taking antibiotics chronically and now Remicade the last 3 years. Your post is interesting and important because I have often wondered about the long term consequences of all the meds I am taking. As a matter of interest I also have sleep apnea and am going for another sleep study soon. I used a CPAP back in 2010 and didn’t like it but heard they have better models now. I also have managed to survive stage 3 thyroid cancer and surgery for same. You sound like you could be me 5 years from now. My blood work all comes back good both on liver chemistries, TSH and tumor marker tests for thyroid cancer.

Regarding the stage 3 kidney disease what meds were you taking over the years?

I’m 60 and also have sleep apnea and fatigue. Perhaps your CPAP pressures need to be tinkered with - sleep apnea can change over time. I use an alternative to CPAP, an oral appliance called a “mandibular advancement device.” It’s easier for me than CPAP, though it’s no longer quite as effective for me as it used to be.

The kidney trouble might indeed be from medication, but it’s moe likely to be a single, specific one than the whole collection.

I also have thyroid issues since getting my joiuch. Just had a biopsy last week. I have a cyst on my thyroid that keeps filling. Seems my thyroid is out of whack but tests come back normal. I attribute my thyroid issues from constant sleep deprivation and stress on my body for last se en years w all my complications since getting the pouch or just another lousy auto immune issue now that colon and rectum are gone. . 

Jeane,

Stay on top of those thyroid issues. I had no symptoms or issues before my stage 3 cancer was detected when, during a routine annual exam, my PCP examined/felt my throat, detected swollen glands. It was not visible to the naked eye, he felt it. He sent me for an ultrasound and within 6 weeks I had surgery. Stage 3 because it had started to metastasize into the lymph nodes so I had the whole thyroid and two lymph nodes removed. I now take synthroid.

I've had Hashimoto's thyroid disease over 30 years now along with teen UC followed by J pouch 1982.    Fatigue issues got real bad late 40s so I saw a natural kind of thyroid specialist who found I was quite anemic.    Got me to go gluten free and supplement iron which I continue to do.    That all has helped greatly.   I also started on testosterone gel as I was low there as well and that helped greatly with fatigue issues and anemia also.    Currently I am very active and exercise a lot.    Unfortunately my j pouch is giving out after all these years and I am up to 16 BMs a day again more sleep deprived.    Looking at surgical options now.   Hope some of this may help.   

Sean

Im taking MOBIC- for inflammation, 2 water pills , Zetia for high cholesterol. Singular for sinuses, Cozaar for high BP, Requip for Restless leg syndrome, zantac and nexium for acid reflux. Everytime I take my yearly complete blood profile to the Kidney, Sleep apnea and family physician they do a few xrays of my chest then add more medicine. Im sick of the meds, they are killing my KIdneys and liver now. The kidney dr took me off Mobic and all aspirin products and put me on Tylenol. Now my kidney functions are slightly down and my Liver functions is high!!! the blood profile in april this year was great then it went to H on the 15th of this month. @years ago my Physician sent me to a Gastroenterologist to have a upper gi as i know i have a bad stomach. This dummy told me no need , he was the one that put me on ZANTAC and said the upper Gi was un-necessary!! he was an idiot . So now id bet my stomach is behind repair. I also take b-12 shots and Testosterone every month and still have little energy.

My hubby is 59 and has had his pouch for close to 25 years. No other issues other than having to wear a brace on his knee, back issues (but he does weightlifting to try to stop that issue) and gets pouchitis 2 to 3 times a year. 

I'm 37 and have had my j-pouch for 25yrs. Currently on Humira and MTX, I do worry about my long term health as my arthritis has progressively got worse over the last 4 years and subsequent fatigue has really slowed me down. If I don't get at least 7.5hrs sleep I'm an absolute train wreck. 

I have had my j-pouch for 8 years.  Surgery did not go well.  Lost 35 lbs. have PSC, bronchioistis  severe leg cramps, osteoporosis,   I am a small woman to begin with. I am down to 94 lbs. Hard to digest food.  Take a lot of vitamins.  Prolia injection,  At least 1x during week I take an oxycodone I take atovan at night to sleep and take Lomotil in morning also vsl#3 packet.  I get depressed often I had asperated pneumonia this past winter.  I feel like I am falling apart also.  I have always been healthy and now I am depressed most of the time because I don't feel well.  I have grandchildren and want to be apart of there life.  I feel so bad sometimes because I can't do the things I used to do.  I don't want to live on pills. I try to help myself , it just doesn't work.  If I didn't have to eat I would be fine  lol I know some of you are worse,  and I truly wish everyone gets thru all of this. I have been on this site for along time now and many of you have helped me thru a lot of issues  that was going on. It seems no one understands unless they go thru this.  I guess I just want to vent and thank everyone for helping.  You are the only ones that understand   Thanks for listening.    Grace