Surgery for me
Question:
Hi Mick My name is Lesley and i am 36and live in the UK. Ive had UC for 16yrs and I to have got to have the operation within the next 5-8 weeks. To be honest I’,m frightened to death, so it looks like we are in this together. If you get any useful replies I would really appreciate if you would let me know. Perhaps we can chat online sometime. LesleyX
Response:
Hi Shaz, I’ve got to have an ileostomy quite soon perhaps you would contact me Lesley
Response:
Hi, Mick. I’ve been in your boat. Nearly two years ago, after 22 years of UC, my gastro found some dysplasia in my colon. After I researched the heck out of it, I couldn’t see any responsible alternative to his recommendation to remove my colon. The vast majority of people seeking UC surgery are doing it because their disease is out of control or intolerable. Surgery represents a huge improvement in their quality of life. For those of us with dysplasia, it’s not necessarily an improvement in the "quality" of life. But of course, it avoids a very real risk of colon cancer. I chose to have a "J-pouch," which is the operation where they delete your colon, create a new rectum from the end of your small intestine, and hook it up to your anus so you use the toilet "normally." This was done as a 2-step procedure, with a temporary ileostomy for the 3 months between operations. After this procedure, you have good bowel control and can normally hold stool in for some time. I found that things "worked" so normally that I didn’t have to learn to do anything new. Most of the time, I have a hard time believing that I ever had surgery. I still feel like the same person I ever was. Many J-pouches get an inflammation called "pouchitis" that can be a nuisance and can remind you of colitis. The good news is, pouchitis generally responds promptly to medication. I’ve found that certain spicy foods irritate my J-pouch. People say that everyone’s experience is different in this area. Some people experience occasional, minor fecal leakage (more common overnight). I’ve had that sometimes when my pouch was affected by pouchitis or irritant foods. In my opinion, it’s a small price to pay. In general, I’ll admit that my ordeal has given me a bigger appreciation of life than I already had. By the way, personally, I dreaded the temporary ileostomy. If fact, I found it to be quite liveable (though if I had it to do over, I’d still choose the J-pouch). There are many people who swear by their ileostomies. Each procedure has its specific advantages and appeals to different people. I’d be glad to answer any specific questions you may have. Feel free to e-mail me. Sam from Connecticut – Hide quoted text — Show quoted text ->Well, it’s happened. They found high-grade dysplesia. Out comes my colon >in the next few weeks. Just found out yesterday. >I was wondering if anyone who hangs out around here has had the operation. >I’m wondering how it changes the way people feel. Me, I’ve for the past >twenty years basically forced myself to ignore the pain and uneasiness that >never went too far away. My colitus was never bad enough to make me choose >to have the operation, but I haven’t been in remission since I was 16 (I’ll >turn 32 at the end of the month. I’ll be in the hospital!). Actually, I’m >not all that upset about it, since I’m finally going to get to find out what >it is like not to have Ulcerative Colitus. If anyone wants to tell me what >to expect, I’d appreciate it.
Response:
Mick I know how you feel. I’ve had my ileostomy since I was 10 years old due to UC. I had it cos I never once went into remission the whole 5 years I had UC and also they found evidence of dypslasia. Life without UC is great! Before Ileostomy: Always looking for the nearest loo, took 21 tablets a day (because I had to cut some in 1/2 cos they were too big to take as is, it was more than that really), numerous doctors visits, blood transfusions, pain, etc. After ileostomy: no need to find the nearest loo, no more meds, no more doctors visits (haven’t visited a doc due to my ileostomy for 20+ years) – after all, why do you need to visit a doctor for UC when there’s no colon for UC to be in?, no more pain, untold freedom to do what I want. For my full story go to: http://www.geocities.com/HotSprings/Spa/8089 Just be aware that there are alternatives to an ileostomy, ie the J Pouch, BCIR, etc. It might be an idea if you go to alt.support.ostomy newsgroup and post your question there as well to get the full picture. Take care and if you have any specific question regarding the ileostomy op, just email me. Shaz – Hide quoted text — Show quoted text – > Well, it’s happened. They found high-grade dysplesia. Out comes my colon > in the next few weeks. Just found out yesterday. > I was wondering if anyone who hangs out around here has had the operation. > I’m wondering how it changes the way people feel. Me, I’ve for the past > twenty years basically forced myself to ignore the pain and uneasiness that > never went too far away. My colitus was never bad enough to make me choose > to have the operation, but I haven’t been in remission since I was 16 (I’ll > turn 32 at the end of the month. I’ll be in the hospital!). Actually, I’m > not all that upset about it, since I’m finally going to get to find out what > it is like not to have Ulcerative Colitus. If anyone wants to tell me what > to expect, I’d appreciate it. > Mick
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Response:
Mick, Think of it this way. Dysplasia is a GREAT reason to have your colon taken out. It really is. You do NOT want to mess around with colon cancer, right? I am currently considering surgery for my UC. I have a strong history of colon cancer in my family. Right now I am strongly favoring the idea of surgery, it will probably happen within the next 6 months. However, if they ever found dysplasia, I would be in my car on the way to the hospital so fast, that all you would see is a little Joe-shaped puff of smoke as I ran out of the room. I am quite curious to find out what it’s like to be without a diseased colon. On one hand, the surgery is so major, I know it’s going to hurt like a mother for a few days. On the other hand, I have been told by many people that you can feel a difference almost immediately. One guy told me he was eating pizza within a week of his surgery. Now THAT sounds tempting! Also, to me it seems simultaneously gross and fascinating to have an ostomy. I mean, they’re giving you a new orifice, and they’re taking away an old one. That’s going to be weird. I know what you mean about forcing yourself to ignore the pain and uneasiness. I have had UC since I was 14, I am 25 now. I can’t believe I’ve made it this far, to be honest. I look back at some of the things I have done IN SPITE of severe diarrhea and extreme illness, and I shake my head in disbelief. I am sure you have been there too. If you have dysplasia, your colon is better off in the TRASH CAN than it is in your body. The same could probably be said for UC in general, but each person must make up their own mind. -Joe – Hide quoted text — Show quoted text – > Well, it’s happened. They found high-grade dysplesia. Out comes my colon > in the next few weeks. Just found out yesterday. > I was wondering if anyone who hangs out around here has had the operation. > I’m wondering how it changes the way people feel. Me, I’ve for the past > twenty years basically forced myself to ignore the pain and uneasiness that > never went too far away. My colitus was never bad enough to make me choose > to have the operation, but I haven’t been in remission since I was 16 (I’ll > turn 32 at the end of the month. I’ll be in the hospital!). Actually, I’m > not all that upset about it, since I’m finally going to get to find out what > it is like not to have Ulcerative Colitus. If anyone wants to tell me what > to expect, I’d appreciate it. > Mick
Response:
Thanks. As I said in another response, I’m not sure of the name of the surgery I’m having – I haven’t even talked to the surgeon yet. But I’m pretty sure I have a pouch built inside of me. Mick – Hide quoted text — Show quoted text – >You didn’t say what kind of surgery you are having? Ostomy or j-pouch? I vote >for the j-pouch. I’ve had mine now for 2+ years. There are some disadvantages >such as you still have more than the usual bathroom trips because the pouch >doesn’t hold as much, but they are controllable. Also, the consistency will >never be normal, but you won’t have diarhea either. You can basically eat >whatever you want, but the more fiber you eat, the more trips to the bathroom. >And the best thing of all…no medication. Good luck.
Response:
Well, it’s happened. They found high-grade dysplesia. Out comes my colon in the next few weeks. Just found out yesterday. I was wondering if anyone who hangs out around here has had the operation. I’m wondering how it changes the way people feel. Me, I’ve for the past twenty years basically forced myself to ignore the pain and uneasiness that never went too far away. My colitus was never bad enough to make me choose to have the operation, but I haven’t been in remission since I was 16 (I’ll turn 32 at the end of the month. I’ll be in the hospital!). Actually, I’m not all that upset about it, since I’m finally going to get to find out what it is like not to have Ulcerative Colitus. If anyone wants to tell me what to expect, I’d appreciate it. Mick
Response:
You didn’t say what kind of surgery you are having? Ostomy or j-pouch? I vote for the j-pouch. I’ve had mine now for 2+ years. There are some disadvantages such as you still have more than the usual bathroom trips because the pouch doesn’t hold as much, but they are controllable. Also, the consistency will never be normal, but you won’t have diarhea either. You can basically eat whatever you want, but the more fiber you eat, the more trips to the bathroom. And the best thing of all…no medication. Good luck.
Response:
Thank you. I’m not sure what the name of my surgery is – I know I will not need a bag of any kind, although maybe temporarily, as I’m told the operation may be done in two stages. Thanks again. Mick – Hide quoted text — Show quoted text – >Mick >I know how you feel. I’ve had my ileostomy since I was 10 years old due to UC. >I had it cos I never once went into remission the whole 5 years I had UC and >also they found evidence of dypslasia. >Life without UC is great! >Before Ileostomy: Always looking for the nearest loo, took 21 tablets a day >(because I had to cut some in 1/2 cos they were too big to take as is, it was >more than that really), numerous doctors visits, blood transfusions, pain, etc. >After ileostomy: no need to find the nearest loo, no more meds, no more doctors >visits (haven’t visited a doc due to my ileostomy for 20+ years) – after all, >why do you need to visit a doctor for UC when there’s no colon for UC to be in?, >no more pain, untold freedom to do what I want. >For my full story go to: http://www.geocities.com/HotSprings/Spa/8089 >Just be aware that there are alternatives to an ileostomy, ie the J Pouch, BCIR, >etc. It might be an idea if you go to alt.support.ostomy newsgroup and post >your question there as well to get the full picture. >Take care and if you have any specific question regarding the ileostomy op, just >email me. >Shaz
Response:
Amy, glad to here that you are feeling more positive. That will go a long way in helping you recover. Good luck with your surgery. — Paul Visit our photo albums at http://www.laflammefamily.ca To reply, replace "deadspam.com" with "laflammefamily.ca" — – Hide quoted text — Show quoted text – > Thanks you Marlena, Bruce, Ms TJay and mgbio for your support and good > wishes. Since last night I have been feeling very positive – the end of > "disease pain" is in sight, just a bit of "healing pain" to get through. > Take care everyone, > Amy. > Good luck Amy! I’m betting that in the end you, like so many others, > will ask yourself "why did I wait so long?" Something that helped me > deal with the pain of my surgery was I saw it as healing pain with an > end in sight as opposed to disease pain which never ended. > 
mgbio
Response:
Amy, You will be in our thoughts. I hope everything works out well for you! Please let us know how you are when you get out of the hospital. If you had a laptop – that would keep you pretty busy and you could still keep in touch!!! Marlena – Hide quoted text — Show quoted text ->Thanks you Marlena, Bruce, Ms TJay and mgbio for your support and good >wishes. Since last night I have been feeling very positive – the end of >"disease pain" is in sight, just a bit of "healing pain" to get through. >Take care everyone, >Amy. > Good luck Amy! I’m betting that in the end you, like so many others, > will ask yourself "why did I wait so long?" Something that helped me > deal with the pain of my surgery was I saw it as healing pain with an > end in sight as opposed to disease pain which never ended. > mgbio
Response:
Thanks you Marlena, Bruce, Ms TJay and mgbio for your support and good wishes. Since last night I have been feeling very positive – the end of "disease pain" is in sight, just a bit of "healing pain" to get through. Take care everyone, Amy. – Hide quoted text — Show quoted text – > Good luck Amy! I’m betting that in the end you, like so many others, > will ask yourself "why did I wait so long?" Something that helped me > deal with the pain of my surgery was I saw it as healing pain with an > end in sight as opposed to disease pain which never ended. > mgbio
Response:
Good luck Amy! I’m betting that in the end you, like so many others, will ask yourself "why did I wait so long?" Something that helped me deal with the pain of my surgery was I saw it as healing pain with an end in sight as opposed to disease pain which never ended. mgbio – Hide quoted text — Show quoted text – > Well, it’s the end of the line for me. I go into hospital tomorrow, and > most likely I will have had a colectomy in the next few days. I am > really not looking forward to going back to hospital, and am terrified > at the thought of surgery (especially the pain factor), but maybe once I > have recovered from the surgery I will get some peace at last. > On the plus side, no more UC, and no concerns about colon cancer! On the > downside, having to adjust to a stoma, and probably a j-pouch in the > future. I know a lot of people say they have never looked back after > having surgery, I am hoping to feel the same way. > I’ll let you know how I go when I come home from hospital. > Take care everyone, > Amy.
Response:
All will go well . Stay strong!
– Hide quoted text — Show quoted text -> Well, it’s the end of the line for me. I go into hospital tomorrow, and > most likely I will have had a colectomy in the next few days. I am > really not looking forward to going back to hospital, and am terrified > at the thought of surgery (especially the pain factor), but maybe once I > have recovered from the surgery I will get some peace at last. > On the plus side, no more UC, and no concerns about colon cancer! On the > downside, having to adjust to a stoma, and probably a j-pouch in the > future. I know a lot of people say they have never looked back after > having surgery, I am hoping to feel the same way. > I’ll let you know how I go when I come home from hospital. > Take care everyone, > Amy.
Response:
Well, it’s the end of the line for me. I go into hospital tomorrow, and most likely I will have had a colectomy in the next few days. I am really not looking forward to going back to hospital, and am terrified at the thought of surgery (especially the pain factor), but maybe once I have recovered from the surgery I will get some peace at last. On the plus side, no more UC, and no concerns about colon cancer! On the downside, having to adjust to a stoma, and probably a j-pouch in the future. I know a lot of people say they have never looked back after having surgery, I am hoping to feel the same way. I’ll let you know how I go when I come home from hospital. Take care everyone, Amy.
Response:
Good luck Amy, you will be fine. I have had 2 bowel resections and after the first couple of days each time I have been amazed that I have hardly any pain compared to Crohns. It has always been such a relief. Put you foot down if you are in pain! Just get any pain relief you can, thats what I think anyway. all the best Melanie
– Hide quoted text — Show quoted text -> Well, it’s the end of the line for me. I go into hospital tomorrow, and > most likely I will have had a colectomy in the next few days. I am > really not looking forward to going back to hospital, and am terrified > at the thought of surgery (especially the pain factor), but maybe once I > have recovered from the surgery I will get some peace at last. > On the plus side, no more UC, and no concerns about colon cancer! On the > downside, having to adjust to a stoma, and probably a j-pouch in the > future. I know a lot of people say they have never looked back after > having surgery, I am hoping to feel the same way. > I’ll let you know how I go when I come home from hospital. > Take care everyone, > Amy.
Response:
- Hide quoted text — Show quoted text – > Well, it’s the end of the line for me. I go into hospital tomorrow, and > most likely I will have had a colectomy in the next few days. I am > really not looking forward to going back to hospital, and am terrified > at the thought of surgery (especially the pain factor), but maybe once I > have recovered from the surgery I will get some peace at last. > On the plus side, no more UC, and no concerns about colon cancer! On the > downside, having to adjust to a stoma, and probably a j-pouch in the > future. I know a lot of people say they have never looked back after > having surgery, I am hoping to feel the same way. > I’ll let you know how I go when I come home from hospital. > Take care everyone, > Amy.
Good luck! Cheers, Gary B-) — Armful of chairs: Something some people would not know whether you were up them with or not – Barry Humphries
Response:
Thanks Mel, I’ll keep your advice in mind – I’m a bit of a chicken when it comes to pain, but hopefully knowing there is an end in sight will help Amy. – Hide quoted text — Show quoted text – > Good luck Amy, you will be fine. I have had 2 bowel resections and after the > first couple of days each time I have been amazed that I have hardly any > pain compared to Crohns. It has always been such a relief. Put you foot down > if you are in pain! Just get any pain relief you can, thats what I think > anyway. > all the best > Melanie
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Thanks Gary – Hide quoted text — Show quoted text -> Good luck! > Cheers, > Gary B-)
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Good luck Amy! – Hide quoted text — Show quoted text ->Well, it’s the end of the line for me. I go into hospital tomorrow, and >most likely I will have had a colectomy in the next few days. I am >really not looking forward to going back to hospital, and am terrified >at the thought of surgery (especially the pain factor), but maybe once I >have recovered from the surgery I will get some peace at last. >On the plus side, no more UC, and no concerns about colon cancer! On the >downside, having to adjust to a stoma, and probably a j-pouch in the >future. I know a lot of people say they have never looked back after >having surgery, I am hoping to feel the same way. >I’ll let you know how I go when I come home from hospital. >Take care everyone, >Amy.
Response:
- Hide quoted text — Show quoted text – > Well, it’s the end of the line for me. I go into hospital tomorrow, and > most likely I will have had a colectomy in the next few days. I am > really not looking forward to going back to hospital, and am terrified > at the thought of surgery (especially the pain factor), but maybe once I > have recovered from the surgery I will get some peace at last. > On the plus side, no more UC, and no concerns about colon cancer! On the > downside, having to adjust to a stoma, and probably a j-pouch in the > future. I know a lot of people say they have never looked back after > having surgery, I am hoping to feel the same way. > I’ll let you know how I go when I come home from hospital. > Take care everyone, > Amy.
Best of luck Amy. Like you say, the large majority of people are quite satisfied with their quality of life after the surgery.
Response:
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