31 years and counting

Hello Pioneer,

I too am new (1st day) to this site, an have had my jpouch for 20+ years, what a great site for info. when I was in the hospital back in 90's the surgeon who was going to perform my surgery required me to contact at least 6-10 of his former patients from a list of 300+ to ask or discuss any questions worries an concerns regarding my upcoming scheduled surgery. He felt the direct calls were important, because everyone has/had their on unique experiences, it was a very tough thing for me to do from the hospital, but once I was home recovered and living life again, I understood the importance of those calls, I too would receive. Again the web an this site is a blessing & a wonderful thing!  I too had my concerns (especially with occasional flareups) and worried about what tomorrow would bring as far as my own health care needs, and for those who would be my custodians if needed. Both of my parents are currently dealing with long term health challenges, but they are happy an well cared for with respect an dignity. Do not to worry about the maybe's & what if's, but still keep a list a what you think you might need or want in the future. I'm sure you are not alone with your concerns, an again what a great website to have as a sounding board. I have another 10 years before I too can say I'm in the ranks has a pioneer!  Regards, Claudia

Pioneer
I am 62 years old and had surgery almost 24 years ago, at Mount Sinai, New York.Thanks for being a pioneer of this surgery!
So, yes, I do understand your concerns about aging and how it will affect the pouch and care involved.
For the first 10 years post op, I did really well. Did not have to take any meds, just had to be careful with diet, but well under control.
After 10 years, I started to have more difficulties with cramping, bouts of severe diarrhea and loosing weight. I was diagnosed with chronic pouchitis and had a fistula repair. For the last 4 or 5 years, I take daily meds of Pentasa, Nexium and every 3 mth Cipro for 1 week. Since I have been on this regiment I have been doing very well again.
What the future brings? I don't know, but for the moment, my pouch is under control and I have a very good medical team to call on if I run into problems. I am not looking forward to loosing the pouch and going back to an ileostomy. But will just have to wait and see. Right now, its not an issue, and I will deal with it when the time comes.
I hope that seeing a doctor when you are back on insurance will help get the flare up quickly under control and that you will feel better soon!

Welcome to the site everyone!  

 

I'm 59 and have thought about the future and caring for my lack of a colon.  That is one of the reasons I declined biologics and more prednisone before my surgeries.  They were 4+ years ago. I had such a difficult time with my stoma and wouldn't want to have one again.  I've seen how difficult it was for skilled nurses at changing my appliances and bags and wondered what would happen if I couldn't do that for myself.  Nursing homes tend to use the cheapest things, like these appliances, unless you have enough money to pay for a top drawer place to stay.  If I could afford that kind of place I'd hire help in my home and not go to a skilled nursing facility.  

 

I've experienced seeing how they operate through the years as my dad has had to spend  time in them and at different facilities for months at a time. I think a j-pouch would be better and agree a bidet should go to the home with me!  With all of my current health problems I doubt I will live long enough to need that level of care.  There is little to no choice in the content of meals and when you are allowed to eat.  They tell patients when to take a shower, go to PT or OT and basically the patients are treated like children with no control over their lives.  It works well for many patients and I always found the staff to be caring and compassionate. I understand the reasoning behind the menus, timing of meals and showers from the administrators point of view too.  I would just rather have the help of a bidet than a ileostomy.  

Yeah, unfortunately, my GI who specializes in IBD and has many J pouch patients, has said "old" pouches (not "old" patients) who had surgery 20-30 years ago are coming at him more and more with refractory pouchitis, new IBD symptoms (he's not convinced it's *always* a Crohn's conversion; he thinks the change in the pouch mucosa to more "colonic" type tissue is somehow reigniting our genetics to "attack" our pouches, down the line), fistulas, etc.

My surgery was 24 years ago, at age 19. I'm happy for my 20 years of almost no issues, post op. The last couple have been not as great, at times, but things are pretty good, as a whole.

I think that we will continue to see pouches at these older "ages" have increased issues. I mean, the surgery was less than a decade (give or take) when *I* had mine done. That's low for clocking long term issues, honestly. You, I, and others are entering the multiple decades with thee surgical pouches. We shall see where we end up.

I know I totally could rock an ileostomy again. I had no issues with my loop.

And one last thing: my GI said years ago (like with me) they toted J pouch surgery as "curative."  No longer does he use that term. He also counsels prospective patients, and tells them at this point, he expects at least 1/2 of them to have some issue down the line.

Yep, I remember being told that the J pouch was supposed to be a cure for colitis. Oh well! When something is still so new one takes their chances!
But there really was not much choice after trying meds, diets, acupuncture and weight down to 85 lbs at 5ft 3in...

I don't regret the decision, have been so much better overall then the pre-surgery days. So we see what the future brings and hopefully our experiences will help the next generation coming after us!

I, too, agree, and have no regrets, despite new things!

April will mark 33 years for my j-pouch.  I turned 55 in November, and have had the same thoughts about the future, so its great to see others discussing the topic.  I had my surgery in 3 stages, so I had a normal (non-loop) illeostomy for 3-4 months while they waited for my weight to return to something close to normal.  Then they did the j-pouch construction and I had a loop illeostomy for close to 6 months before the final surgery to close it.  I had great luck with the normal illeo, so much so, that I was 100% sure it was better than having Collitis, even at age 22.  The loop illeostomy was not so easy to care for because it does not make a nice simple circle at the point where you have to apply the various kinds of bags that are (or were) available at the time.  The loop was harder to care for, and more messy to deal with, but I assume that if we had the j-pouch surgery reversed, we would end up with a traditional stoma, and it would be easier to care for.  

 

I have given this extra thought because a few years ago I had to have a craniotomy to stop some bleeding in my head.  I was on blood thinners at the time, and my occasional bout with pouchitis causes me to push really hard to empty the pouch, and sometimes I push hard enough to burst blood vessels in the crainial cavity, which caused a real problem when I was still on the blood thinners.  I am off them now, and things are fine, but I am at greater risk of stoke because I am not on the thinners anymore, so in addition to the "how will I deal with this in a Nursing home" question, I am asking myself whether the ostomy would be a good trade-off in order to get back on blood thinners.  I had the j-pouch surgery when I was 22 because I did not want to have emergency surgery when I was older, and now I am wondering if I would tolerate the reversal surgery better when I am 55 or 60, then when I am 75 and maybe don't have insurance.  

The difficulty is that I am only 55 and have done pretty well with the pouch for 33 years, so it would be a major thing to un-do at this point.  My GI Doctor (who I like) thinks I am insane for even asking the questions, but I prefer to try to plan for things rather than letting them happen, which sounds like many of you who are thinking about this too.

Haven't been on in a while. Thanks for all the replies.  I now have insurance but it doesn't cover the Lahey Clinic where I've had my doctors for the last umpteen years. Right now things are calm though Thank God. All will work out I'm sure. 

I too have no regrets, I had my diagnosis and surgery at the same time 34yrs ago when I was 18. Surgery at downstate hospital NYC. Revision 1986-mayo clinic.
I am 52 now and remember the doctors telling me as I got older it would be harder. I didn't realize how much harder, until I had to stop working a year ago because no meds work any longer. I've tried everything and the only thing that I can get to slow me down somewhat are narcotics, Vicodin, donnatal which I can't function on.
I think about it quite a bit

I don't know if this will help you or not, but I've always had a sensitivity to medications which added to complications of needing the surgery years ago. I couldn't handle the medications prescribed,or the effects due to them, I was that 1% those small warning letters on packages talk about. But for the past 20 years I have had success (knock on wood) with these over the counter replacements, an thus far and have suffered no side effects.

 

Loperamide Hydrochloride 2mg.(Costco best price) started 3 X's a day now only in AM/PM unless system running fast, Metamucil in AM/PM after meals to help slow and pull movement content(s) together. I also found that with adding Simethicone 180mg with the PM Metamucil dosage, it really keeps the GI system quiet (less gassy & gurgling more easy ZZ time). Recently it was suggested by another GI about adding Probiotics due to Intestinal health benefits. I just started taking Florastor 250mg (Costco best price) and again I'm impressed on how the system is responding with regularity. If this reply helps let me know.