I wish my father had known that a pouch was an option when he passed 19 years ago come May. He decided that he did not want the bag, and therefore let the cancer take him. I have had the jpouch for 7 and half years, past two have had a lot of issues, but hopefully getting past them. My siblings have all had the jpouch with very little issues longer than me. Aunt and cousins too. Only cousin to have issues was the one where the pouch wouldn't heal so he had to go to the bag permanently. I thought the jpouch was new (15 years or sooner). Reading these, I was very wrong. Makes me sad to think about all the people who didn't know about an alternative back then who chose my dad's path. Having the bag for three months while my pouch healed, I understand the hatred of it, but I wish there had been more general knowledge back then.
Good for you! My Dad's was done same year. Mine the year after you. Wonder if there are a few out there a wee bit older. Good for you at 76 and thank God you got the pouch and got it fixed. I had a perforation and went septic too at one point - among other issues...I wonder who out there knows when the first j pouch was done...and if it was in USA or elsewhere. Would be interesting to know. Congratulations on all your hard work and coping with the pouch and other health issues and remaining positive about it. Courage! Thanks for sharing your story with us.
I've had mine 10 years. (2006).
Mark
My reply was to the person speaking of pouch success - I am so sorry to hear about your Dad. The bag is not fun...and who knows if/when we may have to have it again...but I still believe with all its ups and downs that life has been more than worth it with all our issues. I look forward to when "they" can fix these illnesses without a pouch at all - and I bet it will happen in the future. Hope for future generations to benefit from research and things going on now.
FAPLifer posted:I wish my father had known that a pouch was an option when he passed 19 years ago come May. He decided that he did not want the bag, and therefore let the cancer take him. I have had the jpouch for 7 and half years, past two have had a lot of issues, but hopefully getting past them. My siblings have all had the jpouch with very little issues longer than me. Aunt and cousins too. Only cousin to have issues was the one where the pouch wouldn't heal so he had to go to the bag permanently. I thought the jpouch was new (15 years or sooner). Reading these, I was very wrong. Makes me sad to think about all the people who didn't know about an alternative back then who chose my dad's path. Having the bag for three months while my pouch healed, I understand the hatred of it, but I wish there had been more general knowledge back then.
Wow al your siblings and cousins. And they can't find a cure. I have had my pouch for 22 years and was 31 when I had the bag. Which was only 5 months after I got married. And by the way still married. Just always figured I had to get through whatever came up. Didn't want my kids or wife to have to give up any thing cause of me. But at times they had to put things on hold. The bag did slow me down The jay pouch was a plus. Still wish I never had any of this. Hang in their I just joined Facebook pages too. That seem a little easier to jus talk and support. And sorry about your dad
I bet facebook is better - I don't do it...I am one of the last hold outs! I don't know why - I tried it and just did not like it. My husband loves it. I imagine I will get on there eventually and get used to it as I age.
Thanks for the facebook tip.
So my surgery was back in 2005 and yes not one single follow up from GI guy or surgeon, for that matter anyone with regard to post surgery life with j pouch. So after this length of time and taking things for granted, I wondered if there is a life span for pouchers and if things go south, what are the options(cause I don't think I could do a bag again). To this point I guess, I'm going to say that I'm blessed. First year was rough with 20-30 trips to washroom which tailed off to 4-6 presently but that was it, absolutely nothing else that I've had to deal with and with no consideration to diet. But that's why I'm researching the subject now and was really encouraged to see so many posts with 20+ years of relatively good success. So what I taking from this is that we are all individuals and what works for some won't work for others and I'm just as much in the dark as I was yesterday. I ask my doctor if I should be doing anything pre-emptive with rerard to the pouch, he says he's got nothing for me, do what you're doing.
such profound advice
Good to be aware - it's just like anything - it ages - and for some - it causes problems - for others - very few! 30 years with mine - obviously, would prefer not to have it and to have a colon that had been ok. That said, many more good times with it than bad. Mine was done in 1987. Glad you are doing well. Yes - that first year after is tough (if I can remember!)....good luck and take care of yourself. Wishing you many happy, good years with the pouch!
thanks for the comments, that's exactly what my concern was, the ageing process, at age 67 was hoping that pouch would out last me. So although there are a lot of horror stories, after reading comments from people like your self with good long term results, it's like I said earlier, encouraging. thanks again, good health to you
I have had my jpouch for 16 years with little or no consequences until January 2017. Had the first partial blockage and went in to the ER. Blockage was resolved with NG tube etc. I am finding it more difficult to fully empty the pouch now as the stool has changed in the last year to a toothpaste consistency rather than more liquid. I also strain more but no pain per se. Miralax was used last week as I felt backed up again( was on Cipro and Flagyl but stopped it 3 days in) and did not want another ER visit. The Miralax allowed me to go with less straining. I don't want to be dependent on the Miralax. Need a pouchogram soon! Anyone else have similar issues? Thanks
Yes yes yes - many have had these issues, including me. My good news for you is for me they are temporary - and then they pass. When they happen - or I go to hospital (only a few times over 30 year period w/ pouch) - I freak out and think, "this is it" - I'm done for or will have to go to ostomy, whatever - I think that is human nature. But, with patience and persistence, I've always gotten past it. I will say the issues are much better now as I do not work anymore- I had a very stressful job for 25 years w/ the j pouch and I think especially towards the end that was part of why I had so many problems. I do not take disability - although I probably should. The hassle of it and them saying "no" and fighting for it are just more than I can stand. We just live on a lot less and my Gi issues are much better without all that work stress. I wish you well and hope you get out of this situation fast - Jan- the guru of this forum - will say, "take a deep breath; this too shall pass". And Jan is right! Hard to do when you are in the thick of it.
FAPLifer posted:I wish my father had known that a pouch was an option when he passed 19 years ago come May. He decided that he did not want the bag, and therefore let the cancer take him. I have had the jpouch for 7 and half years, past two have had a lot of issues, but hopefully getting past them. My siblings have all had the jpouch with very little issues longer than me. Aunt and cousins too. Only cousin to have issues was the one where the pouch wouldn't heal so he had to go to the bag permanently. I thought the jpouch was new (15 years or sooner). Reading these, I was very wrong. Makes me sad to think about all the people who didn't know about an alternative back then who chose my dad's path. Having the bag for three months while my pouch healed, I understand the hatred of it, but I wish there had been more general knowledge back then.
Yeah the bag is completely evil and disgusting. I would rather die than live with it for the rest of my life. I'm hoping my j pouch will last, it's been 13 years and my biggest problem is a painful anal stricture. When I had a bag, I was so depressed, that I ended up in the psych hospital several times for attempted suicides. I could only be okay with it while I was high on hydrocodone, otherwise I would cry when I had to change the bag. They are also expensive and my insurance wouldn't cover the bags or bag accessories.
18.5 years
Although I would not go as far to say that the bag is “evil and disgusting”, I would say that it would not provide me with the quality life that I choose to enjoy. I had my j pouch for 30 years before it had to be removed. Fortunately, there were two available options that do not require having an external bag: the K pouch and the BCIR, both of which have a surgically created internal pouch and are emptied 3-5 times a day at your convenience with a small plastic catheter. I opted for the BCIR and have had very good results. These procedures are used primarily to replace failed J pouches and problematic end ileostomies. There is a lot of information about both procedures on the internet as well as surgeons who perform them.
It is pretty disgusting because every night no matter what I did, the bag would leak all over my bed. I am so used to sleeping on my stomach that I would always roll over on top of the bag and it would burst. Also the load noises that it made, had me drop out of college. Online classes were not very common back then and I didn't want to sit in class and have everyone turn around and look at me when it made a noise. I was only 21 when I had an illeostomy, so it was a much bigger deal than say a 50 or 60 year old with one.
Hi all I'm new on this site.ive had my pouch since 1988 I was 27 I'm now 56, I have suffered so much since then. My surgery was horrendous I ended up with peritonitis and went into septicaemia shock, was found dead in the bed ,they resuscitated me called all my family up to the hospital saying I only had 2 hrs to live,I was taken back to theatre and they took 2 1/2 litres of puss out of me. I've truly suffered ever since I'm currently on fentanyl patches for constant pain as my insides are a mess ( once told by a surgeon) I live everyday in pain and constantly on the loo having to wear pads for bed . I do my best to live my life but it's hard. Until recently reading this forum I have felt alone because doctors do not want to listen I've been made to feel that it was just me who was suffering from the " J pouch ". How happy I am to be involved on this forum and reading all your stories. I don't feel alone now Thank you x
DM - I am so sorry for all the pain and suffering you have experienced. Yes, one feels so alone and isolated when in pain. I have been through periods of it, but have gotten past it each time. My insides are all a mess too, but for me, a strange experience of a surgery gone wrong (it was for something else)...which was really hard, led to them opening me up for an emergency surgery - and as difficult as that experience was, the surgeon cleaned a lot up in there - and used newer techniques and medicine to prevent further adhesions. It was awful at the time - this was 10 years ago - but it has given me years of much less physical pain. However, I did struggle a lot emotionally for several years after. I finally got on this site about 3 years ago and was active on it for a couple of years and then sort of let it go and moved on to a focus about what I can still do. I found new hobbies to get my mind off of the negative - etc. - It took a lot of work and I know there is no easy answer to what you are going through. But, I am going to send love across the ocean to you - that somehow, you will feel less alone...that somehow, you will find a better source of pain relief, and...I pray you have some family support - although I know that's hard too as you don't want to be a "burden". I think of all the people in the world who suffer so much with all kinds of health issues - it makes me look back (I am 54 now) and I think - what a miracle that I had days thousands of them...when I was just living without chronic pain. How I took those days for granted, etc. - Please please know you are not alone. Use this site - I was on it every day for about 2 years - I would dip into all kinds of threads and found so much love and support on here. It helped me reset my mind - I so needed to be HEARD at that time...and you will be heard on this site. Thank God for the doctors and nurses who created this forum. Get onto several threads and "meet" the wonderful people on here. You will find them so wonderful and inspiring. You are NOT alone. Others care and you will find them on this wonderful site.
I've had my pouch almost 10 years. There have been some bumps along the way, but overall I'm very happy with my decision.
I posted earlier on this thread saying that mine is 38 yrs old...I wanted to add something for those who are worried about aging with a pouch or what will happen as you get older etc.
My beloved surgeon once said that a pouch should not age differently than your natural intestines as long as there is no underlying disease.
I age poorly...that is me, not my pouch. But I do a lot in spite of my age and health. I just spent a week working in Belgium (8hrs/day) with 2 severely injured arms (don't ask how I intubated my k pouch...a nightmare, especially in a high-speed train!)
There is pain, there is discomfort and there are many other 'normal' age-related problems but my pouch is ageing with me.
It has given me a quality of life that I could never have imagined. Certainly not as a sick teen.
We cannot control what life has in store for us nor can we control our health but we can do our best to stay as healthy as possible and give our bodies what we need to age well.
I would not worry too much about how our pouches are going to age but how we are going to do treat ourselves and what we are going to do to keep optimum health.
Yoga or pilates can help, keeping our core muscles strong in spite of the insults of ageing, working on our balance issues and avoiding too much fat or sugar or unhealthy carbs.
I say all of this after having one of my best friends have to come to my rescue and 'take me to Belgium (changing 3 different trains each way) and help me to dress, intubate and turn on and off the shower.
She is older than me, in good health and but not athletic...But she does pilates 2xs/week. She carried our 2 carry-on bags, backpack and purse up and down more flights of stairs and train platforms than I can count. All without stopping.
She astounded me. As soon as I can use my arms and legs I am enrolling in Pilates. I thought that I was healthy and strong but she blew me away.
Take care all, stay healthy and exercise!
Sharon
I had my pouch for nearly 26 years. I still have it, but was recently diverted with a permanent end ileostomy due to Crohn's related abscesses, ulcers, holes in the darn thing, strictures, etc. My dr. at Cleveland Clinic said they do not take many pouches out, they try to redo them. However, my pouch "has to go", in her words, after I recover from the abscess/ileostomy surgery.
Its been discussed before on here, so a thorough researching on here might get you a more precise answer. When I had mine done in 1986 the surgery had been around about 5-10 years depending on when you measure. My understanding is the first surgery was done in England, St Marks I think?
And to be candid while I wonder about the aging process ie incontinence etc, in many respects whats the point, we cannot stop the aging process, so what will be will be. I have an amended diagnosis of Crohns now as well. Have had it for 12 years now. Been on biologics for 11 of those years. Seems to keep the beast at bay although there are periods of trouble but nothing like full blown ulcerative colitis when I had that.
Net net I would still have the surgery and while I am at risk of losing my jpouch and going back to an ileostomy, I will cross that bridge when I must. I have diligently refused my GI's suggestions to do so.
Good luck to all.