New to this forum and need some advice please

Hi everyone

This is my first time posting on here! I had an emergency ileostomy at the beginning of this year due to long-standing UC and, apart from being rushed into A&E with a serious infection 6 weeks post-op, I am on the whole getting to grips with things, although it hasn't been easy as I know you will all appreciate!

Anyway, my problem is that I am due to have an internal pouch fitted at the end of June and I really don't know which way to jump, and I am hoping that there may be some of you out there who can offer me some advice or support while I am trying to make my decision. Maybe you have chosen not to go ahead with the op yourself or have done so, or know of someone who has. Arghhhh, please help if you can as this decision is really giving me a headache and some sleepless nights!!

Thanks so much

I have some very strong opinions in this area... Please read my blog and then read this response... Depending on the type of internal pouch, I will have a different response... But also look around, and you will get some very definitive opinions... We will talk again on this subject... Michael

Yes, you should listen to your fellow ostomates over most doctors. I like keeping my pouch on the outside. There is too much chance of internal leaking unless you like going in for multiple surgeries. There are more bad than good stories on this one.

Greetings and welcome to our little online family!
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I wouldn't ever dream of telling someone else what kind of choice they should make in terms of future surgeries, because at the end of the day I'm not the one who will have to live with the consequences. That being said, I know there are lots of people who have had the "takedown" surgery, and are very happy with it. Conversely, there are scores of folks who live very comfortably with their bag. On a personal note, my husband also had a fairly rushed ileostomy surgery done a little more than a year ago due to long term ulcerative colitis, and he too had a very severe post op infection! That was a very stressful time in our lives.

Now the both of us are 100% stronger, happier, and more in love in spite of all the pain we went through - because we did it as a team! In other words, there is absolutely life after ostomy surgery, with or without that silly little bag of yours! My husband is so far leaving his options open as far as what the future may hold; he is in no hurry to put his body through another surgery, though at the same time there are moments when he does hate his bag, too. On the whole, however, I think both of us are quite happy living with the bag for the forseeable future. ^_^

I am confident that with time you too will come to a choice that is agreeable to your individual needs. Just take your time! Give yourself a break! Love yourself enough to be patient with yourself.
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Hi Michael

Thanks for getting back to me. I have read your blog and can see why you don't always agree with the pouch surgery option - I am just sorry you went through so many problems after your op, but it is great to hear that you are back on track now and at ease with your stoma.

After much headache, I have decided to postpone my surgery and take some time out for myself and not rush to put my body through a major op so soon. This will also give me time to get used to living with my ileostomy after having problems with infections, etc.

I hope you've had a good weekend


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Tips on Hernia Prevention with Collin | Hollister

Hi

Just wanted to let you know that I have decided to postpone my pouch surgery for the time being. I felt that it was way too soon to put my body through another major operation and it would also give me time to get used to living with my ileostomy.

Sounds like you've had a great weekend out and about on the bike!!!
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Hi

Thanks for welcoming me to the online family!

I just wanted to let you know that I have decided to postpone my surgery for the internal pouch. I felt that it was too soon to put my body through another major operation and also following the infection. So, I guess this will give me time to get stronger and also to get used to my life with the ileostomy.

I am really pleased to hear that you and your husband have come through everything and are indeed much stronger - long may that continue!

I hope you've had a good weekend
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Hi Smiler
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and welcome!

I think it's a great decision you've made ... to just wait a bit. It's one thing to have no option and have emergency surgery. But if you have the time to let your body and mind heal some more ... it can't help but be good.

Do lots of research, talk to knowledgeable people (like us
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), get a second medical opinion regarding the surgery and what post-op life would entail ... you'll come to a decision that is right for you.

Personally, I could have the pouch operation, but the possible downsides are just not worth it.

All the best.

Hello Smiler, when I went down for surgery, I didn't know whether I would emerge with the internal pouch or the bag; now I've got both!
I was told it all depended on what they found once on the operating table. There was an age limit on having the pouch, and I was still within it.
I woke up to the internal pouch and still feel to this day that I was a guinea pig. Many years later, with a constant raw bottom, another hospital advised the bag. When I came around from that, the surgeon said he couldn't make out what had been done to me in the previous operation. Afterwards, I found out if the rectum is still in place, as it was, the ulcerated colitis settles there, which it did, in a more concentrated form.
The bag operation resulted in me pooing not only in the bag but also from the internal pouch; something hadn't been tied off properly, and it had to be redone. What a mess I was in and hit rock bottom with depression. By that time, I was also widowed. My family was very good, and their patience helped me through, but then I was sore from the stoma constantly leaking or pushing the bag off, sometimes four times in 24 hours, many bed accidents too...and pancaking. Only this year have I felt anything like an improvement, but I still need to regain some confidence to get away more. I feel "safe" at home, with everything I need for a quick sort out, everything ready to swing into action on a table in my toilet. I've also found that a sheet or two of white kitchen roll under the bag and over it can save countless washings if the leak is caught in its early stages.
I must stress this is just my own experience. Ask lots of questions before deciding on anything and don't be persuaded by confident consultants who tell you it will solve all your problems but fail to tell you that it might create a whole lot more new ones.
Keep smiling!

Personally, I'm glad you've decided to give your poor body a break for the time being! When my husband Tyler decided to have a colectomy, our surgeon informed us of his options for having an internal pouch formed at a later date. When I asked him how long we had to decide, he told me that he had recently done a "take down" surgery on someone who had lived with their ileostomy for 18 years!! That's a hell of a long time! But, it's a good thing, because it tells me that there is no pressure, and that Tyler has many years before opting to get another operation, if that's what he ends up choosing.