Seeking advice on stoma movement and no reversal options

Hello, I am new to posting in a forum, but have read many different posts by other people. I have had Crohn's since I was 18 and had five separate operations in that time, removing parts of damaged bowel. My last operation was to give me a temporary colostomy to give my bowels a rest and repair a fistula that was continually causing infection. I was told when the surgery was performed that reversal would be an option in a year's time. I had the operation in May 2010. Straight away after the op, it was apparent that the location of the stoma site was not ideal and was in a depression in my skin caused by a previous drain site from one of my operations that had been performed. I have tried a wide range of different bags that are designed to be convex in nature to stop leaks, but nothing has ever worked properly and my skin around the stoma site is very sore and red raw. I tried irrigation but it did not work.

I met with my medical consultant today following a recent colonoscopy to check the condition of my bowel with a view to starting to consider reversal. At the time of my colostomy surgery, I was told by my surgeon that reversal was a simple procedure. Now today, my medical consultant has said that reversal would not be advisable because there is still active Crohn's in many areas of my bowel and that my best option is to have an ileostomy instead of the colostomy. He said he does not make the final decision as that is down to the surgeon, however, I am to be labeled as an emergency patient for surgery and he will write to my surgeon. I know that my surgeon has indicated that he does not want to perform a reversal now and that he will probably agree with my consultant. I feel very depressed as it always seemed as if reversal was going to be completed and now it seems as if I am going to have a bag for life. I don't know how I will get through it. I have felt so depressed since I was given a bag and now I will have one until I die! Please, any advice or words of wisdom would be appreciated.

Hi Inception, I know you must feel that not having the reversal is the end of the world right now, I think most people do. But given time, and if you could only get the right equipment and getting the skin healed would go at least some ways to making you feel a bit better. Have you been getting advice about the bags from your stoma nurse or trying on your own? I know that the aftercare is very varied around the country, but I would persevere and also try the suppliers for advice. I use Securicare who are very good at answering questions and giving hints and tips. In fact, it was them and then finding this site that turned my life around. I wish you all the luck in the world and hope that you start to accept it, as I truly believe that acceptance is all. Keep us posted on how you are getting on.

Hi Inception - you have come to the right place for both words of wisdom and support. There are many here (including myself) who had reversals with less than optimal or even disastrous results. I know I would have been very disappointed, however, to never have had the chance to try a reversal. It took me 5 pain-filled years to finally ask my surgeon for a permanent colostomy. Now I eat and drink pretty much anything I want and fortunately I am able to irrigate daily (but even that sometimes gets old!)

I will let the ileostomates here give you their words of wisdom. From what I know, I wonder if you would be a candidate for an internal reservoir (BCIR) which is emptied a few times a day with a catheter. Or a J-pouch where the small bowel is connected directly to the sphincter. People here have very strong feelings about J-pouches (usually not positive).

The most important thing is to be able to live well, without constant fear and disabling pain. You probably have already felt some benefit of your ostomy. I don't think any of us would have chosen to have an ostomy, but some, like me, realized all other options were worse. Bonne chance my friend.

Hi icept. Omg, you tried to irrigate is Crohn's in the large or small bowel. I was told never to irrigate, but I have an ileo now from Crohn's. But I was reversed, man. Please get them to give you the right medication. You don't want to have a reversal if your disease is active. I'm kinda not surprised they don't think it's a good idea. Believe me when I say reversal wasted a ruined quite a few years of my life, 3 times matey. I did everything to not end up like this. I think wait till you get the right medication, then harass them to reverse you. Please, I know what I'm talking about. Not saying I'm a professional, I get it! I wanted mine reversed, waited 12 months, and they did it. But they never got it all, so I had to have my second operation for ileostomy 6 months after it was reversed. And yep, it should not have been the same site. I got a HUGE ulcer, so it was reversed after another 12 months, and I now have it on the opposite side. Then 3 years after it was moved a little bit more. Oh, what a mistake. It's the scar tissue from all the ops that have ruined me since 2008. I'm still on pain relief, strong, and I know I have another addiction. Tramadol was a 3-year hell for me. I had soooo much, I was crazy for 3 years. Got off it cold turkey March 2011. But now morphine for maybe 6 months. Now my adhesion pain is sooo intolerable. Every operation you have done is another step into hell. Please, maybe get the reversal and see how long you can stand it. But have they tried HUMIRA? Don't take those rotten steroids. They ruin your bones down the track. Xxxxx please take care. I GET IT, YOU WANT IT GONE FOR ALL THE TROUBLE IT'S GIVING YOU. XXXX MOOZA XX Melbourne Australia xx

Hi, I have a permanent colostomy due to cancer. My doctor told me that people who get reversals often end up with complications and wish they didn't get the reversal. I know of 2 people who have had it done and regret it because they need to be near a toilet at all times, especially after they eat. I am not saying that all reversals are failures. I am sure there are some who get lucky without complications. But most of the stories I have heard were negative.

Hey Inception (666 nice touch), the best way to get through is to realize that there is nothing that you can do about it and that it will make your life a hell of a lot better. I was told after my initial surgery that a reversal was possible, but I knew with my luck that was not going to happen and I was right. (I have an ileo) But I am alive and nothing beats that! So I'm stuck with a bag for life - really, who cares - I'm not any different and neither are you or any of the rest of us. As a matter of fact, I just celebrated Stefan's I (my stoma) birthday on November 15, 2010. If it was not for the ileo, I would be dead. So the way that I look at it is this - better a bag than dead, better a bag than constant pain, better a bag than surgery after surgery. Try to appreciate the new life that you were given. Try to have days when you do not think about it at all, try to have a sense of humor about it. This philosophy helped me to get on with it and to stop dwelling on only the negatives. We are all here to help and be supportive. Good luck and all the best - Terry

Hi Inception, I'm a Crohn's sufferer and have been to hell and back with it, had many surgeries on the bowel. I understand you well, getting used to the idea of reversal because of bad times with colostomy. If it turns out you do have ileostomy, then yes, you will have another stoma. I recall many painful times with Crohn's and would never want that ever again. I didn't have a life. Now, yes, I have a stoma. With the right guidance and good fitting bags, your stoma and skin will be better. For now, you do need to see your stoma nurse and get things sorted. There are so many different things you can put on and around the stoma. I do really hope you can come to terms with having an ileostomy, believe me, your life will be better having gotten rid of the rest of the Crohn's. Hope you have found comfort in all the posts on here. Good luck for the future. Ambies.

Greetings Inception,

I am fairly new here as well, but I've been dealing with this for almost 30 years now.

I feel your pain, dude. I really do. I was diagnosed (improperly) at 18 as well.
I have Crohn's and had my first ileo at 23 for less than a year. I got lucky and had a reversal that worked for 9 years.

In the meantime, I had a career, a wife, and a child. The summer of my daughter's 3rd birthday and my 32nd birthday, I ended up with another trip to the hospital. 5 surgeries after a 4-month stint left me without many options. Then I got really pissed off and asked to be sent to a surgeon who knew what the hell he was doing. I did and thankfully ended up at home after 10 days with an ileostomy. I was told at the time that the rest of my parts still worked and that a reversal was possible. Here I am 18 years after at the age of 50 finally considering a reversal.

My point is a simple one based on your facts. Numerous surgical sites and obvious active Crohn's and a consultant and a surgeon who don't agree? That's a recipe for disaster, in my opinion.

First and foremost, as long as you have active Crohn's, deal with that issue in and of itself before you do anything. Find a new doctor, find a new medication, find a new dietician who will work with you and get it under control. It may take a while (I went through 5 years of trial and error and finally found the right diet for me and ended up completely rid of all of my meds). Nothing else matters till you figure that out. The good news is that you have a bag that will increase your chances of making that happen.

Now, as for the bag and the tough time you have with fit and leakage, etc... That too requires a lot of effort and a lot of trial and error but... eventually, you find some concoction of mixed products to help you get some sense of control back. Even if all you do is control the leakage at the stoma site, that's a start... a good start.

One by one, these seemingly insurmountable problems become manageable in some small ways. Then you can start looking at other ways to manage life in general. Once you have some peace of mind, then it will be reasonable to consider reversal.

In the meantime, perhaps your diagnosis changes enough to logically consider all of your options thoroughly.

Crohn's can be treated to the point of getting clearance for surgery. Surgery may end up giving you the option to have an ileostomy and perhaps a reversal down the road.

But one thing for sure from what you're describing now, you have far too many individual issues that will not simply vanish because of one reversal surgery. You need to step back and decide which project to tackle first, deal with it, and then move on. Once you manage that, then decisions can be made with a more focused attitude. It changes your perspective on life and gives you greater confidence to deal with 'the idea of having a bag for life' (I'm with ya brother just read my post "still crazy after all these years") and you'll see what I mean.

You already had some great ideas from fellow ileos on the immediate issues, but the one thing that really caught my attention was the obvious fact that you are feeling overwhelmed right now, which is exactly how I felt way back when. It doesn't have to feel this way. I hope my example gives you the confidence that can do something about things as they are one by one. You don't have to figure it all out tomorrow. It might take you a few years to sort it all out (my second ileo was just inches above the first one, and it took me a few years to sort out the best-fitting products and accessories, but once I did, it changed everything for me) but it is possible.

The best first step was signing up here. There is a wealth of support and knowledge here that you won't find in many other places. We all have our own experiences/expertise/areas of interest, and it's all available to you for the asking.
One day at a time, sometimes a step forward, sometimes a step back, but always mindful that there is a way to have a life with an ostomy. Every person here is a testament to that. Now it's your turn to figure out what your version of life will be... one step at a time.

Please let us know how things are working for you and of course ask anything you feel the need to.

Be well, Inception, and have faith in yourself.

Life is good!

Michael

Hi,
I had a similar issue, Crohn's and a reluctant surgeon.
What you have to know is there are no targets for reversals and they get very little money to perform them. They are quite happy to leave you with it.
I fought for mine. I went back on the Pentasa and had a fiberless diet which really helped. He said my bowel looked good when he reversed me on the 15th November.
It has been hard and it really hurts, but early days yet.
Don't be fobbed off, ask for a time to get your bowel in good health and then ask for a colonoscopy to look at it, as well as your stump.
It is your body and you need to be able to make decisions about it.
Good luck,
One more thing, I only got flare-ups after periods of stress, so try painting, writing, creative things to relax you.
Sunny x

Hi there,

I know it feels like a total disaster, but the relief you get is worth it. I had a J-Pouch...ask about it...I was hooked up normally for about six years and it worked very well...for that period. It finally stopped working, and the Ulcerative Colitis symptoms returned as bad as ever.

I got an Ileostomy, and the pain was gone!!! In the end, it is your quality of life that counts!! They did not remove the Pouch, but now after about ten years, I need an operation to remove the J-Pouch and close up my butt permanently. I'm having pain and discharge again...Fungal infections constantly.

The J-Pouch can be a disaster or it may work forever...you should ask your surgeon.

You will be able to handle the Ileostomy...we all do when the pain stops.

Eamon.....