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S3ashel
I think most of us here who have had the surgery are glad we did. Apparently 90 % of people have little if any problems with their pouch and the other 10 % experience some difficulty.
I have had mine 3 years and am generally happy with it experiencing generally minor issues such as butt burn after eating things Iknow will affect me or partying a little too much but hey ya gotta live!
I should warn you that you should expect butt burn during the first year no matter what you do. It is unpleasant but not debilitating and is easily cured meaning generally only a few unpleasant days!
I hope your surgery goes well and you re enjoying your new pouch before long I don't think you'll regret making the decision. (While you can go back to the Ostomy I doubt you will ever want to).
Lew
I think most of us here who have had the surgery are glad we did. Apparently 90 % of people have little if any problems with their pouch and the other 10 % experience some difficulty.
I have had mine 3 years and am generally happy with it experiencing generally minor issues such as butt burn after eating things Iknow will affect me or partying a little too much but hey ya gotta live!
I should warn you that you should expect butt burn during the first year no matter what you do. It is unpleasant but not debilitating and is easily cured meaning generally only a few unpleasant days!
I hope your surgery goes well and you re enjoying your new pouch before long I don't think you'll regret making the decision. (While you can go back to the Ostomy I doubt you will ever want to).
Lew
thanks heaps for your info Lew, is the butt burn like the burn when you have leaks from your stoma and what products do you suggest for it.
S3ashel
Fortunately you won't have to worry about the BB until you actually get your pouch LOL!
I do recall having some sore skin around the stoma as I was allergic to the paste. I used a barrier spray from Convatec for that.
The BB I guess is from the acid in food. Initially you will want to take it a little easy to determine how various foods affect you but I wouldn't go to extremes.Gradually you should be able to eat anything you want.
(Cooked tomatoes do it to me every time -fortunately I rarely eat them except in a good stew).
For my BB I use Vaseline and find it works for me. Most people on the site swear by Calmoseptine. (The worst of the BB will generally be over in less than a year. Which is not to say you won't have to pay the piper when you eat something you know you shouldn't but I think most of us eat it anyway but maybe less)!
There are a few other things you may or may not get but most are readily treatable - I always say at least I don't have to worry about Colon cancer!
Lew
Fortunately you won't have to worry about the BB until you actually get your pouch LOL!
I do recall having some sore skin around the stoma as I was allergic to the paste. I used a barrier spray from Convatec for that.
The BB I guess is from the acid in food. Initially you will want to take it a little easy to determine how various foods affect you but I wouldn't go to extremes.Gradually you should be able to eat anything you want.
(Cooked tomatoes do it to me every time -fortunately I rarely eat them except in a good stew).
For my BB I use Vaseline and find it works for me. Most people on the site swear by Calmoseptine. (The worst of the BB will generally be over in less than a year. Which is not to say you won't have to pay the piper when you eat something you know you shouldn't but I think most of us eat it anyway but maybe less)!
There are a few other things you may or may not get but most are readily treatable - I always say at least I don't have to worry about Colon cancer!
Lew
I probably should have mentioned I had Colitis for about 10 years before the meds stopped working and I took a reaction to Remicade the last resort.
I had my 3 surgeries over a 3 year period as I wanted to leave a year between each step for everything to heal and the surgeon was OK with that.
Lew
I had my 3 surgeries over a 3 year period as I wanted to leave a year between each step for everything to heal and the surgeon was OK with that.
Lew
Good luck with the surgeries. As long as you have an experienced surgeon, you should be just fine.
Reports from Cleveland Clinic place pouch failure at around 5-10% over 20 or so years the operation has been done however, recently, they place it at around 2-5% and cite most failures from a change in DX to Crohns or occurrences Chronic Pouchitis.
Most people have 'good' results, in that they are able to deal with their 'new normal.' For me, adapting to the J-Pouch and getting used to this new normal has been easier than getting used to the bag.
No one will be able to tell you what your frequency is, but most have between 4-8 during the day and 0-2 at night.
Personally, I'm 4.5 months out and go about 6-7 times a day and can sleep at night for 6-7 hours without going. I'm sure things will get better as the years go on, but currently I couldn't be more thankful for my results.
I wish you nothing but the best, and I am sure you will be pleased with your results and start living life again doing all the things the bag restricts you from!
Reports from Cleveland Clinic place pouch failure at around 5-10% over 20 or so years the operation has been done however, recently, they place it at around 2-5% and cite most failures from a change in DX to Crohns or occurrences Chronic Pouchitis.
Most people have 'good' results, in that they are able to deal with their 'new normal.' For me, adapting to the J-Pouch and getting used to this new normal has been easier than getting used to the bag.
No one will be able to tell you what your frequency is, but most have between 4-8 during the day and 0-2 at night.
Personally, I'm 4.5 months out and go about 6-7 times a day and can sleep at night for 6-7 hours without going. I'm sure things will get better as the years go on, but currently I couldn't be more thankful for my results.
I wish you nothing but the best, and I am sure you will be pleased with your results and start living life again doing all the things the bag restricts you from!
thanks heaps guys it really help to hear encouragement from those who are going through it. Ill be posting more as im going though the op. Im believing for it to work and at least its reversibe where the alt wasnt have the rectum removed and keeping the bag forever so heres hoping. Ive been encouraged to see some great stories on here. thanks. Any tips for what to take to hospital and to have ready for recovery. Also how long was it before you could drink coffee or eat when you had your operation.
S3ashel
Just reread your post today and realized that you are going for Step 2 which if I'm correct will be a "loop" ileostomy. If that is correct the surgery will likely not be as bad as the first one but it is extremely important after this surgery that you pay particular attention to your hydration until takedown.
I kept the loop for a year as I left a year between surgeries. While I had no problem ( other than the usual ones with the bag) after step 1 I went to the hospital by ambulance 13 times with the loop. The cause was severe cramping caused by dehydration. (I passed out twice from the pain). They would just hydrate me at the hospital ( usually 3 bags of fluid) and send me home. While many of us have had hydration issues with the loop mine was probably on the extreme end but I have never forgotten the pain!
Since you are only waiting a few months before having takedown you will likely be fine but be aware of your hydration level. (I don't remember anyone telling me before it happened and some surprises aren't always fun LOL!) .
Lew
Just reread your post today and realized that you are going for Step 2 which if I'm correct will be a "loop" ileostomy. If that is correct the surgery will likely not be as bad as the first one but it is extremely important after this surgery that you pay particular attention to your hydration until takedown.
I kept the loop for a year as I left a year between surgeries. While I had no problem ( other than the usual ones with the bag) after step 1 I went to the hospital by ambulance 13 times with the loop. The cause was severe cramping caused by dehydration. (I passed out twice from the pain). They would just hydrate me at the hospital ( usually 3 bags of fluid) and send me home. While many of us have had hydration issues with the loop mine was probably on the extreme end but I have never forgotten the pain!
Since you are only waiting a few months before having takedown you will likely be fine but be aware of your hydration level. (I don't remember anyone telling me before it happened and some surprises aren't always fun LOL!) .
Lew
I also had dehydration issues!!!! It was terrible. I had my first surgery and my second surgery all done in one day and then because of my dehydration I had my take down 7 weeks later. My pouch did not leak so we went for it. I only drink now "Smart Water". I see you live in Australia so I don't know if they have it there but it has electrolytes in it. It is the only think I drink day and night. You should try and find it. I wish I would have known about it when I was so dehydrated. I do come home after my take down with a PICC line. Which they would have given that to me before. I was so dehydrated and so very very ill, that nothing would stay inside of me. I am very glad I had the take down. It is a long road but I am alive and no colon cancer. I do have to have a scope yearly for rectum cancer check. I just had it done last Wednesday. My surgeon left only a little bit of my rectum but it was used to attach my pouch to. So I hope this helps you out! Each day is getting better for me. I had my take down March 16, 2012. I do have good days and bad days. But each day does seem to get easier. I also have a lot of different hemorrhoid cream. I just found dibucaine it is generic and I just got it a few days ago and I love it. It numbs the area. I hope you can find it where you live. I am loving it. I did have to purchase it on line through drugstore.com
Please keep us posted. You will do just fine. And this place is awesome with so much help right at your finger tips. Everyone on here is a life saver!!!!
Please keep us posted. You will do just fine. And this place is awesome with so much help right at your finger tips. Everyone on here is a life saver!!!!
hey guys yeah ive had the illieostomy for 2 years now and have had to watch for dehydration only had a prob once when i got stranded in a broken down car with no water with me learnt since then to keep water with me always, this next op they will be creating the pouch and repostioning the illieostomy and the doctor said will be bigger than the last one which was about 7 hours long, the last one will then be the part where they join it all up if no leaks etc, thanks for the info keep it coming think just knowing u guys are here helps a lot thanks heaps