Feeling Lost and Confused with My J-Pouch Journey

On the 10th July 2011, my stoma turned 2! Ahh, that fateful day when I was rushed into the operating theatre instead of onto a plane for my summer holiday! But looking back on it, I'm quite glad it happened because had it not happened then, I'd have ended up with a burst colon and septicemia, not something that would have been much better to be honest! So I wished my little friend a very happy birthday and thanks for saving my life!!

My J-Pouch, on the other hand, had its first birthday on July 23rd, 2011. And it was not a very happy birthday at all!! All year I have been in and out of the hospital, taking a cocktail of painkillers every day and for about 9/12 months been wearing a rectal catheter- not exactly this year's must-have accessory!! I hate it! And for most of the year, I've been keeping positive, thinking it will all come to an end soon, it just has to! And when it does all work out, I will hopefully end up with a fully functional, good pouch and my battle scars to show off on the beach or at the pool! But the longer it goes on, the more I feel like I'm fooling myself, and recently I have had a couple of breakdowns and days where all I've wanted to do is give up! I know it's a natural reaction and everybody has those days, but it really is hard to stay happy all the time and always think of how much worse off I could be because, to be honest, with my pouch the way it is now (even with a temp ileostomy), I sometimes wish I could go back to the time where I had my chronic UC because at least then I could sit on the toilet for a while and the pain would ease!! If you know me well on here, then you will know by now that a week after having the J-Pouch ileo-anal anastomosis operation, I developed a couple of small abscesses and had to be taken back into the hospital a few days after being discharged. They appeared to have cleared up the problem there and then and did an endoscopy to check everything, and everything looked fine (trust me, I watched it!!) However, 6 months down the line and I just wasn't appearing to be doing as well as I should have. I couldn't sit down on my bum, and I had to carry a pregnancy/haemorrhoid ring around with me so I could sit on a chair!! After extensive testing and being sent to the private specialist hospital in my country, they found out that since the initial problems, my immune system had not recovered and more abscesses had grown behind the pouch, and one was almost the same size as the pouch itself (how they missed this time and time again with the number of CT/MRI scans and endoscopies I had, I don't know!!)

All of this was discovered earlier this year, so it worked out that I had around 4 months of tests. In February of this year at the private hospital, my consultant decided that the only thing to do would be to open up parts of the anastomosis in order for the abscesses to drain and eventually heal themselves faster than what they were doing (however, she didn't think a rectal catheter was benefiting me, but boy was she wrong!) So I had the op in London, and about 10 days later, I was back in the hospital with even worse results than before! Once they had sorted me that time, I wasn't back in until my birthday on April Fool's day, and since then I've been in a couple of times up to today. I do have an appointment on the 10th August to see the consultant in London again so she can do an examination under anaesthetic and see how the abscesses are healing, but recently I've been feeling like I'm stood in the middle of a crossroads with cars coming at me from all angles!!

Once I've spoken to the consultant, there's no doubt she'll be able to tell me what's happening and whether or not there's any chance the pouch will work for me. If not, then I guess that means one of my imaginary roads is clear because I'll have the pouch taken out and a permanent end ileostomy put into place (which by now I really don't mind as my boyfriend has told me he'll miss my stoma if I get rid of it!) But I think the reason I'm feeling down at the moment is that I don't even know whether I want the pouch anymore, even if it will work! This is because due to all my problems, the function is likely to be heavily affected, and it will be nowhere near as good as I had initially hoped, so is there any point or will it just seem like I have the UC back again?! Also, if she says to me that the pouch will be fine, function won't be damaged in any way, and I'll be using the toilet 6 times a day, but in order for that to happen, I have to stay as I am (in pain all day every day, on countless medications, and with a rectal catheter in) for another 6 months, I don't know if I'll be able to cope, and will college let me have ANOTHER year away to sort myself out, and can I allow myself another year? After all, I do want to be a doctor, but preferably before I'm too old! But then I don't want to quit, to give up, to have gone through all this knowing it will work just to fall at the final hurdle and say "no thanks, I like wasting and suffering for a year for absolutely nothing to show for it!" I think I'm just scared of making another life-changing decision in the same way I did to have the pouch, only to end up in an even worse off state than I was originally in. Thinking about being told it's not working and has to be reversed immediately comforts me in a strange way because the choice isn't mine to make, and I know deep, deep down inside me that I really tried absolutely everything I could, and if I hadn't, I would regret it. But making the decision to keep going for as long as she says and then 6 months down the line the status of the pouch changes, it's almost as if I'm putting myself through all this stress, chasing something that may never be caught. But on the third option, quitting now even though I know there's a chance it will work, I know inside me that I will regret making that decision for life because I'll never have known whether my pouch would work well and all be worth it.

I know it's a long one, and it is a bit of a rant, but I would love, love, love someone to advise me, maybe if they've had similar problems and know what I mean and what I'm going through? The worst part of all of this is feeling alone. My family, my friends, and my boyfriend have all been amazing and still are, but even they won't understand what I'm feeling right now!

Thanks for reading x

Fran

Hi Fran,

For a young lady, you have enormous courage and sagacity. Right now, you are approaching a critical crossroad in your life and, fortunately, you are very well-informed and open to advice. Here's my two cents: You are young and continue to remain upbeat despite significant issues. So, keep your options open as long as you reasonably can because modern medicine is miraculous. Perhaps within a few years, effective treatments will allow you to maintain a high quality of life with your j-pouch. (My j-pouch worked very well for 6 years until parts of my tubing developed pre-cancerous tissues. Otherwise, I would still be ostomy-free.) At some point soon, you will know which way to go. In the meantime, keep your eyes focused on your long-term plans and dreams. Get into a great medical school and work wonders for others!

I am a distant observer. I am one more who sees how magnificent and courageous you are. I can't see your future but I do see a powerful young woman in it doing whatever you need to do.

Hi Fran, for the sake of full disclosure, I am a failed J-pouch recipient....and I will respectfully disagree with Primeboy and say that you have exhausted all your patience and discovery of J-pouch to allow it to work right for you in your life. I personally feel it is a lost cause and a misdirection of one's hopes to live what we call a normal life. A normal life has nothing to do with how you excrete your waste, it has to do with the quality of life being normal brings. When you are ready, and you make the decision to give up the ileoanal anastomosis, know that you will start to live again because all the body parts which are taken from you will be gone. My advice will also be to have them remove your rectum and anus too, as leaving that behind will only cause problems. It's time for you to feel normal again, and I believe once the J-pouch is removed and you become a permanent ostomate, you will realize what full health is again and continue on with good quality of life. I also advise not to wait for modern science to possibly come up with some pill just so you can crap out your ass, as crapping out your ass isn't what it's all cracked up to be. Sorry for the language. Sorry again if my opinion is too much, but I feel and remember the pain of it all, and it still angers me to some degree that the doctors never wanted to remove mine while I was slowly dying. I now love my permanent ostomy, and not only does it not interfere with my life, it enhances it. Good luck, Michael.

Hello Franicaa,I can't offer advice but simply wish to thank you for your post. I went through years of treatment and suffering hoping that 'one-day' there might be some miracle cure other than an ostomy. When it all got too much and I opted for a colostomy it was such a relief that I wondered why I had not made the decision sooner. However, I do believe that all the hassle was part of an an adjustment process, so that when I did make the 'no-going-back' decision I did not regret it.In my opinion those sorts of decisions are not to be taken lightly and are very personal. I have read many accounts on this site where people have not had a choice in this matter and have not had time to adjust or make their own decisions. That scenario would have been much more difficult for me to come to terms with something I did not really want but eventually felt was a necessity.Once again, thank you so much for sharing your storyBest wishes Bill

Beyondpar, I've actually got a question regarding some of the things you've commented; is it a scary/odd feeling having your rectum and anus removed? I'm really worried that having the anus closed will give me pain/discomfort and just generally look strange. I know it's not a place people look at, but it's just one of those things that goes through my head and freaks me out a little!

Fran, I speak for me and only me, but there are many who I have chatted with here and on Facebook who do feel the same. At first, it did feel strange and I did get phantom poop feelings, but that did go away. Also, because of the way they had sewed my hiney in three different lines, starting close to the anus and then an inch further out and then again another inch further out, so to keep the cheeks tight and close together, yes, that did feel strange for a while and sitting was tough, but now 5 years later I love not having any anal pains, or urges, or issues ever. I did immediately notice my butt had changed, and if I can tell you, it's like I had a butt lift free of charge. There are so many positives I could go on forever. The most important thing is I feel completely and totally physically great. Hence my name BeyondPar. I am better than just par for the course. I am better. I will answer any questions you have. Wishing you well always, Michael.

To answer your question, yes, it was scary, but I was near death and really had no choice. Today, I am so glad I had it all removed. I know that those who don't remove their rectums and anus tend to have problems. Doctors don't normally want to remove it because they always want to reattach you and do another surgery in the future. Getting back to my sutures in my hiney, at first my cheeks, which were sewed tight, did feel strange, but in time, each layer of stitches would melt away and the cheeks would go back to their normal position. The feeling of a tight-cheeked hiney went away, and today my cheeks are as normal as anybody else. (I know that they were sewed tight to let the anal area, which was closed, to heal properly, and that took some time to heal). And definitely cleaner than those that still have their anus.

My surgeon trained in the Cleveland Clinic so I completely trust everything he has done for me, but in order to have the pouch and not be at such a high cancer risk, I have already had about 80% of my rectum removed so there's only a centimeter or so left to take out. I was just unsure if they actually cut the anus itself out so you're just left with a smooth piece of skin or whether it's the sphincter muscles they take out and stitch the hole closed so it at least looks normal. I'm worried that I will just be left with the smooth skin and while that's probably much nicer for some and easier to keep clean, I know that during 'intimate' moments with my boyfriend may become awkward because it looks strange and abnormal. I'm sorry if my questions are a little too invasive, and obviously my Dr will be able to answer my questions but I always find it a bit more difficult to ask questions like this (that seem pretty dumb to me) in person!!! x

I think the surgery has already changed since mine in 2006. While I understand all your concerns and really do empathize with your fear and wanting all parts of your body to be nice, I wouldn't put too much weight on the anal area being perfect. (In truth, it's now more perfect without the anus than with it staying there.) When I do touch my sewed-up area when showering, it's a bit different, but I gotta tell you that when I look at my butt in the mirror, it looks pretty damn good, and the health that came with it more than makes up for the removal of my anus. My sexual partners could care less and, in fact, admired my butt post-surgery more than anyone prior to surgery ever had. Being sick, I'm sure you will agree, that area is basically off-limits because of all the issues with UC. I would never allow my partner near it. Today, I welcome a touch there as I know I am safe not to have any issues. I hope this helps. Always remember too that I am just a lay person who has suffered with UC for 24 years and went J pouch for 3 months and then permanent ostomy in 2006. I am not a doctor, and I have grown to distrust them in general. There are many doctors who are good and do have your best interest at hand. Wishing you well always, Michael. There are no too invasive questions on this site. This is why we come here to ask EVERYTHING. And in final, my complete rectum was removed, my anus and sphincter too is removed, and my cheeks sewed a tad tighter. Just remember the removal of the anal sphincter is a complicated and hard surgery, harder than most people know, but it's done every day and done very successfully.

Good thing I'm the coolest person ever and totally understand you. Lucky. :)

I agree :)