Seeking Advice - To Reverse or Not to Reverse Ostomy?

Hi all,

Hope everyone is well. Not posted anything for a while but I've been reading other people's blogs. As always, some wonderful stories to read and some very good poetry : )

I have finally had my follow-up appointment with my surgeon after having my ileostomy in July. Anyone who read my previous blog will know I was a bit upset after finding out that if I decide not to have my little friend reversed, I will still need another op.... May make me sound a bit daft, but I hadn't realized and no one had told me. Anyway, had my appointment and have had my options explained to me. I either stay as I am and keep my little friend by my side and just have the last bit of the large bowel removed and have myself a Barbie butt, or I have this bit removed and have a reversal. This would be done in two ops. Now, I don't want one more op, let alone two, and he has fully explained the risks involved in the surgery, the success/failure rate, and how many times I can still expect to end up on the loo.

I think, to be honest, I have made up my mind and I'd rather stay as I am. I realize it's still new to me as it's only been a few months and honestly, sometimes I just break down and cry because I want to be 'normal' again, but personally, I'm not finding it difficult to live with and it hasn't affected what I wear and what I can do as much as I thought it would have.

I got my biopsy result as well when I saw the surgeon and everything came back clear. It was such a relief. I'd have jumped for joy if he hadn't just shoved a camera up me!!

I always have the strangest feeling when I come out of an appointment at the hospital. Even with good news, I feel low afterwards. I guess it's because when you talk about it, it becomes very real. Normally, I don't think about it.

I guess after all my rambling on, I'm curious to know what others have found? I understand that everyone reacts differently to having an ostomy. It takes everyone different amounts of time to adjust and accept. But I'd appreciate any feedback from anyone who's in the situation I'm in now... Do you reverse or not?? It's very confusing.

To top off feeling low, I've just found out my husband has been offered another job. I am so proud of him, but it means he's moving away and at the moment, I'm not in a position to follow. I was watching something on TV the other day and someone said, "The Lord never gives you more than you can handle." Well, if he's listening..... I'm pretty close to my limit!!

I hope everyone out there is feeling well. Much love to you all, and thanks for listening/reading.

Mrs. O xxxx

With my urostomy, I will never have a chance at reversal. But you need to think your situation through very carefully and getting advice from people here is a good way to start that thought process. A friend of mine wants to have her reversal, but she has to pay for everything and she cannot afford that, so she will remain with her bag for life. Another 2 friends went for the reversal and complications resulted in a permanent colostomy. I receive and distribute donated appliances to ostomates here in the Philippines. That is how I have so many friends with stomas. Your options have been outlined by a doctor, but the advice from those that have been in your situation and have made their choice will be much more enlightening to you. Either way, it is your decision and one that you will need to live with, therefore you need to be sure before you decide. Bob

Hello MrsO,Thanks for your post. I can relate to what you are saying about making decisions as to whether to have more ops. I decided many years ago not to have a colostomy - now I have to have it I have decided enough is enough and I'm not opting for anymore surgery or anymore doctors appointments unless it becomes absolutely necessary.I believe that there is no such thing as 'normal'. It is something that people say but it is a very illusive concept to actually pin down. I have certainly never met anyone who could genuinely fit the description. Most people have problems in life, so I suppose you could say that is as near 'normal' as people get.I hope you make the right decisions to suit you and your own situation. I never know whether I've made the right decisions or not, as I cannot tell what would have laid in waiting on the alternative routes. Best wishes Bill

Hi Mrs. O, the decision is yours and whatever you do, God bless. I have had them on both sides and the reversal after having it on for 4 months on the right side, then got sick again. I have had 35 surgeries so I know how anyone feels about having more surgeries. I will have to have another for I have 3 more hernias, which makes 32 or more (lost count). But I do wear a colostomy and it is the best thing that has happened, for I don't have to worry about not making it to restrooms anymore. I've had it since February 2010. But good luck to you in whatever you make of it. Sharon.

I had an ileostomy in January 2010. It relieved the horrible symptoms of my colitis immediately. The ostomy has been easy to accept because it released me from the pain that had encompassed my life. My husband was glad to have his wife back. He says he doesn't even see the pouch - he sees me alive and healthy and happy. I had the total proctectomy 8 months later and I found that surgery was more difficult to endure because I was feeling so good and it knocked me down. But now I am 2 years post-op and very healthy and happy. My ostomy bothers me sometimes when I would like to wear a certain style of clothing, but generally I have adjusted very well. I am a long-distance runner and the ostomy actually works in my favor because I carry my toilet with me. The reason I did not have the reversal was that I didn't want to take the chance of developing pouchitis or having to deal with urgency again. I just wanted to be done with it!

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Thanks everyone, appreciate your comments. Strutter.... The first sentence you put is exactly how I feel, I'm so relieved to not feel ill anymore, thanks for putting a comment x

Delighted to hear your news, Mrs. O. You're getting some very sound advice here. I do hope you manage to make your decision without too much anguish. As long as you're free from pain and can enjoy life, you're in the right area. Am waiting on my own meeting with my surgeon for his final decision on my reversal and will happily take his advice as to whether I should go ahead with it or stay with the pouch. I just hope he doesn't give me too many alternatives... just prefer a yes or no answer for this one. Good luck though with making up your mind and reversal, should you decide!! Take care, Colm

Hi Mrs. O. I hope you're well. I think you should be looking to the future. You say you don't really fancy one op, never mind two, but you're a very young woman. If you could have these ops now, recover, and still have your whole life ahead of you, that would be great. Instead of having one now and 3 or 4 years down the road deciding to have the other one. I hope whatever you decide, everything goes well for you.

I have to say Mrs. O, my reversals were a waste of precious life. Simple thing though, if it's not an inconvenience to be pouchless, well! But I wish I didn't have the colectomy. If you keep it, just leave it as is. Best wishes, darlz mooza. I understand both sides of a pouch and reversals. 3 times I'm done, no going back. Kinda glad life's for living...xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Hope all goes well whatever you choose to do. There is the thought of being pain-free, a nice comfortable feeling, and it can make you not want to go down another avenue. But at the end of the day, only you can make that decision. I never had that choice, so for me, it was accept and learn to live with, and caring for my little friend. I hope you find peace of mind. TC, Ambies.

Hi - my first response to a blog. I'm a UC patient and have to make the same decision next month at my follow-up meeting with my surgeon. Quite frankly, I'm pretty much on the same wavelength as yourself, but my surgeon has previously mentioned that having a reversal may increase the chances of getting cancer in the future. Having had an uncle recently die due to cancer of the bowel, liver, kidneys, and bladder, the C-word does not bode well with me. My surgeon has only had two patients who have regretted their reversals and he is in favor of them, but I'm strongly leaning towards the Barbie-Butt as you call it. I want my life as normal as I can hope to achieve, and if it means wearing a bag and not having frequent visits to the toilet, so be it. However, the other side of the argument is just as compelling - being normal again, and not being seen as some sort of freak by those who don't (or won't) understand, wouldn't go amiss. For me, it's going to be the option that gets rid of my constant fatigue. Hope all goes well in whichever option you decide upon.

Hello Mrs. O, I've had two of the three surgeries for the takedown and my advice would be if you're healthy and generally happy with your ostomy, then you should keep it. Surgery number two was really rough for me. I can't imagine how number three will be, but I'm hoping it goes better since my surgeon claims it's the easiest of the three. I've been battling infections, dehydration, and all that stuff for a little over a month now. I'm having output from the ostomy and from my bottom, and it's been a little painful. Not fun having two working bums. I guess what I'm trying to say in a long way is if you're feeling well, why have the takedown and risk that may end up making you miserable again and result in even more surgeries. I know how you feel; I struggled back and forth trying to decide which route I wanted to go. I risked it and went for the takedown, and now I'm wishing I had not. But in the end, only you know what choice is right for you. Good luck to you with whatever you decide. Take care. =)

Dang... I see spelling errors... Sorry about that. LOL

Hahahahah xx

Thanks everyone for your comments. xxx

Hi, Mrs. O. I feel like I know you, having read a number of your posts. I'm in the same place as you right now; getting to be time to decide. I have Crohn's and since we're not candidates for a J-pouch or Koch, my doctor is going to see in a few weeks if I have enough colon left for a reversal. There are so many stories, both for and against. We're lucky to be able to learn from others' experiences to help us decide. Good luck, whatever you do please keep us all posted.