I have UC and have been extremely limited by my disease-and I have four active boys that need an active mom. I am considering having either the j pouch or an illeostomy. What experiences has anyone had with either procedure, do you recommend it, what do you think I can expect...
I am worried that if I go with the pouch I will still be limited to the bathroom or areas with an easily accessible bathroom. Right now I don't even go to the grocery store because it means at least 2 trips in a 1/2 hours visit. My pain and cramping is only with my BMS but I am still having 5-8 in the a.m. and 2-3 throughout the day if I am either at work or home. When I try to go somewhere then the number increases. Will I still be tied to a BR?
I know that if I have the illeostomy then I would be very free to eat what I want and do what I want...but how many times a day would I have to empty the pouch or burp it? I already know that I will face my and my husbands reaction to the change in my body composition/looks...any suggestions to make the transition easier?
Thanks in advance!
TracyE.
I've had an illeostomy for 6 months now and will lose 'the bag' in a couple of weeks when I have everything connected up to the j-pouch. It's definitely not an easy decision to make and I think how happy people are with the end result may depend on how much UC affected them. I've been told to expect 4-6 bm's a day once everything has settled down - so for me this compared favourably to the life I had with UC. The only time I approached anything near this level with UC was on a high dose of prednisone, and this isn't an option long term. Among the other positives are no urgency like UC, no bleeding, no pain, no future threat of colon cancer etc.
I'm a bit reluctant to recommend the surgery as I think it is a decision everyone has to make for themselves. I've had very few complications so far and have got back a quality of life I had missed with UC. All the planning of trips, looking for the nearest bathroom, and watching what I eat are a thing of the past. On the otherhand, I know others who have had a hard time with complications and there are a few who eventually had the j-pouch removed and reverted to an illeostomy. Apparently over 95% are happy with the j-pouch but it is major surgery and the recovery period can be long. I would recommend being as informed as possible before making the choice. The website www.j-pouch.org can be very useful, but bear in mind that many are on it because they are having problems, and those that aren't are probably out living life.
If you choose the j-pouch option then you can always revert to an illeostomy later, but choosing a permanent illeostomy first would not give you the option. For me, I think I would always have wondered 'what if?' if I hadn't given the j-pouch a go first. Life with a bag has not been anywhere near as bad as I'd expected. I probably empty it about 5 times a day (don't bother counting anymore) and it is quick and easy with no urgency. I probably wake up to empty it once a night twice a week and sleep through on the others.
I'm a bit reluctant to recommend the surgery as I think it is a decision everyone has to make for themselves. I've had very few complications so far and have got back a quality of life I had missed with UC. All the planning of trips, looking for the nearest bathroom, and watching what I eat are a thing of the past. On the otherhand, I know others who have had a hard time with complications and there are a few who eventually had the j-pouch removed and reverted to an illeostomy. Apparently over 95% are happy with the j-pouch but it is major surgery and the recovery period can be long. I would recommend being as informed as possible before making the choice. The website www.j-pouch.org can be very useful, but bear in mind that many are on it because they are having problems, and those that aren't are probably out living life.
If you choose the j-pouch option then you can always revert to an illeostomy later, but choosing a permanent illeostomy first would not give you the option. For me, I think I would always have wondered 'what if?' if I hadn't given the j-pouch a go first. Life with a bag has not been anywhere near as bad as I'd expected. I probably empty it about 5 times a day (don't bother counting anymore) and it is quick and easy with no urgency. I probably wake up to empty it once a night twice a week and sleep through on the others.
Post Edited (kiwisteve) : 8/4/2004 10:52:08 PM (GMT-6)
HI Tracy,
I have a temporary ileostomy due to severe fistulas in the perianal area from crohns disease. I had my surgery in May , I dont know yet if I will have to keep it forever or not , the fistulas are still here and arent healing very fast. But if I do have to keep the ileostomy forever, I wont mind because It is unbelievable how good I have felt sence the surgery. I havent been sick one single day , I had this done laperscopic so the hospital stay was short (4 days) and I was back to normal within two weeks.
I had a real hard time thinking about having a bag, I always said i would have to be on my death bed. I thought it was going to be the worse thing in the world. I'm not glad I needed it but I sence I did I am glad I got it.
If you are to the point where you feel bad enough to even consider the idea ( because it is a big change,) I think you already know what you should do. I dont know anything about the J pouch. but the ileostomy has given me my life back.
Good luck on your decision, let me know what you decide. you can e mail me anytime.....
where are you from?
I Just tell myself, it could be worse !!!
"Even with a Bag!!!"
Tonia
Hi Tracy!
I had severe UC for two years. I nearly bleed to death, after unsucessful attempts with medicines and diet, I was told I had
no options left except sugery. I had the J-Pouch with a temporay
ileostomy. I too struggled with body image and how my spouse would
react. I also had mixed emotions about how my two small children would react to my stoma and bag.
All went well. My spouse was very supportive, and the children would
ask to be involved with bag changes. It's hard to hide from a three year old and six year old. Most days with the ileostomy went well.
Depending on your diet and body, expect to measure your output at
least four to six times daily. You will have to do trial and error with what agrees with your body. I loved not being sick withUC, but it was
a shock when my ileostomy bags wuold ocassionally leak. I counted
eight bag changes in a six hour period one day. You should only have
to change appliances every four days. Once I was fitted with the right
appliance I did much better. Your ET nurse will help you if you opted for the ileostomy. And your stoma will be different from the loop ostomy if you decide not to have the J-Pouch.
The J-Pouch gives you more freedom verses ileostomy, but you may
have some time adjusting to your pouch. You can expect at least six to
eight stools and one in the night until your body heals. But in time you
have control of your stools and decide when you want to go to the bathroom. Nothing is a quick fix, but you won't regret it no matter what you choose. Remember to keep your faith! It will get better. You won't have to fight this terrible disease any more!
If you want anyone to chat with about your choice I 'd love to hear from you. May the good Lord bless you, and keep you in his care. God
loves you, and he cares for your health as much as you do. It will get
better I promise!
Take care,
MelanieB
I had severe UC for two years. I nearly bleed to death, after unsucessful attempts with medicines and diet, I was told I had
no options left except sugery. I had the J-Pouch with a temporay
ileostomy. I too struggled with body image and how my spouse would
react. I also had mixed emotions about how my two small children would react to my stoma and bag.
All went well. My spouse was very supportive, and the children would
ask to be involved with bag changes. It's hard to hide from a three year old and six year old. Most days with the ileostomy went well.
Depending on your diet and body, expect to measure your output at
least four to six times daily. You will have to do trial and error with what agrees with your body. I loved not being sick withUC, but it was
a shock when my ileostomy bags wuold ocassionally leak. I counted
eight bag changes in a six hour period one day. You should only have
to change appliances every four days. Once I was fitted with the right
appliance I did much better. Your ET nurse will help you if you opted for the ileostomy. And your stoma will be different from the loop ostomy if you decide not to have the J-Pouch.
The J-Pouch gives you more freedom verses ileostomy, but you may
have some time adjusting to your pouch. You can expect at least six to
eight stools and one in the night until your body heals. But in time you
have control of your stools and decide when you want to go to the bathroom. Nothing is a quick fix, but you won't regret it no matter what you choose. Remember to keep your faith! It will get better. You won't have to fight this terrible disease any more!
If you want anyone to chat with about your choice I 'd love to hear from you. May the good Lord bless you, and keep you in his care. God
loves you, and he cares for your health as much as you do. It will get
better I promise!
Take care,
MelanieB
The only thing I can add to these posts is for me, having the colostony was the best thing that has happened to me in years! Dealing with trying to find bathrooms where I can empty it is much better then hoping I can get to the bathroom in time.
* I think it may be time for a colorful metaphor*
Hi,
I had an ileostomy in January of this year, after years of first colitis, then proctitis (think what part of the body proctologists deal with <g>) and almost dying last winter because my colon suddenly "shredded", according to my surgeon. If I had known how great my quality of life was going to be with the bag I would have done this YEARS AGO. I was told by my surgeon that the option for a pouch depends on your lifestyle, as they can't predict the level of frequency that you'll have with it, and there is the risk of "pouchitis." I have a neighbor who has the pouch and goes 7 times a day or more, with fairly loose stools, but there's obviously no external apparatus and she can wear any tightness of clothing she wants. Having a bag, on the other hand, does dictate what I can wear -- and it's been a huge transition for me to have to wear all looser dresses, etc., after being sick and underweight and being able to wear tight, sexy clothes for years. It's a big change, but I like having more control about when I have to go to the bathroom (I have to empty it 5-7 times a day; as far as burping it, that depends on what you eat.) I have a website with gratitudes, you might want to check it out and see how much of this applies to you. (www.hometown.aol.com/meilandra) Once I started thinking about all the wonderful ways my life was going to change because of having to undergo the surgery, I really did wish I had had it done before I went through such serious problems, living such an extremely limited, painful life. My kids, my friends here and my second husband are all getting to know me now as an active, healthy person, which I never was here before -- it's SO great!!!
My husband has had to adjust to the body changes as have I, that's part of the process that can take some time, but mainly what I hear from spouses is that they're just so glad their ostomate feels so good, plus the fact that they just love them that it really doesn't matter if they have a bag -- they're still the person that they love, just a lot healthier and happier. After the initial cut-for-yourself bags that you have to use at the beginning until your stoma goes down to a standard size, you can get bags that aren't see-through so the "ish factor" is a lot less, plus there is a company called "Yentl's Secrets" that you can find online that will custom-make really cool/pretty/cute/fun/sexy (yes, sexy) bag covers to fit your bag type for less than $15 each. There are ways to lessen the impact, in other words. Please feel free to email me at meilandra@aol.com.
Anita
I had an ileostomy in January of this year, after years of first colitis, then proctitis (think what part of the body proctologists deal with <g>) and almost dying last winter because my colon suddenly "shredded", according to my surgeon. If I had known how great my quality of life was going to be with the bag I would have done this YEARS AGO. I was told by my surgeon that the option for a pouch depends on your lifestyle, as they can't predict the level of frequency that you'll have with it, and there is the risk of "pouchitis." I have a neighbor who has the pouch and goes 7 times a day or more, with fairly loose stools, but there's obviously no external apparatus and she can wear any tightness of clothing she wants. Having a bag, on the other hand, does dictate what I can wear -- and it's been a huge transition for me to have to wear all looser dresses, etc., after being sick and underweight and being able to wear tight, sexy clothes for years. It's a big change, but I like having more control about when I have to go to the bathroom (I have to empty it 5-7 times a day; as far as burping it, that depends on what you eat.) I have a website with gratitudes, you might want to check it out and see how much of this applies to you. (www.hometown.aol.com/meilandra) Once I started thinking about all the wonderful ways my life was going to change because of having to undergo the surgery, I really did wish I had had it done before I went through such serious problems, living such an extremely limited, painful life. My kids, my friends here and my second husband are all getting to know me now as an active, healthy person, which I never was here before -- it's SO great!!!
My husband has had to adjust to the body changes as have I, that's part of the process that can take some time, but mainly what I hear from spouses is that they're just so glad their ostomate feels so good, plus the fact that they just love them that it really doesn't matter if they have a bag -- they're still the person that they love, just a lot healthier and happier. After the initial cut-for-yourself bags that you have to use at the beginning until your stoma goes down to a standard size, you can get bags that aren't see-through so the "ish factor" is a lot less, plus there is a company called "Yentl's Secrets" that you can find online that will custom-make really cool/pretty/cute/fun/sexy (yes, sexy) bag covers to fit your bag type for less than $15 each. There are ways to lessen the impact, in other words. Please feel free to email me at meilandra@aol.com.
Anita
Tracy
I had an ileo in March 03 after 15 yrs of Crohns (crohns colitis) and as many years of steroids and other drugs that failed to keep the disease at bay.
I was offered an ileo 11 years ago and refused as I was a 22yr old male at the time extremely conscious of my appearance etc as we are at that age.
Last year I had to have surgery as things just deteriorated and the medics suggested I have it done 6 days after they told me it was time, whilst I was 'relatively' well enough to cope with recovery.
Initially a temp ileo but I chose to make it permanent 6m after and had all but 6 inches of my colon removed, as although I had the ileo in place I still experienced extreme pain and blood loss etc through the colon, despite being told it would settle!
I have to say 15m on, I wish I had, had it done sooner. The choice to have a major organ removed is a BIG ONE and you must weigh up all the pro's and cons. The advantage(if I can use that term!) with UC is that once the colon is removed, you are free of the disease whereas crohns can still return in other parts of the digestive tract. The docs have actually diagnosed indeterminate CD so are half CD/half UC.
It has changed my life immensely. I am free to go where I want, when I want and eat what I want.
I cannot and would not want to influence your decision because it is your life, body and future that you have to decide on but based on my own circumstances I would not want to continue suffering if someone offered a chance of a pain free life in return for having an ileo.
Life with a pouch will take time to adjust to, physically but I think its a more mental approach that's required because you will see yourself as different and at first being a 'martyr' to the bag. In time you will learn to cope with this and the pouch will take a back seat. It sounds as though you have a supportive family so take something back from them.
As for bag activity, it depends on how much you eat - but there is no need to starve yourself, you've probably done that many times to ease the pain and suffering.
As an idea, 5-6 times a day and 1/2 at night. Bowel activity is very different at first, you will produce a lot more gas until things settle but it's all part of the healing process. Additionally you will learn what foods cause gas/odour together with those that cause loose or thick output and know when to eat them and when not to. I can honestly say that no food is a problem to me and I avoided many foods for years that I can now eat.
Bag changes as an average are required every couple of days, some maybe every day others longer (I go four days). There are lots of different bags on the market according to what you prefer, your stoma nurse should help you through. I did lots of research on the internet when i had mine done and sent off for lots of free samples from different suppliers so i could try the different bags before I settled for the one I use now. Some bags are clear, some covered in 'material' and some you can but covers for! Again, bag burping will only depend upon how much gas you produce and even then, I don't think your likely to inflate the bag like you would a balloon, unless you drink lots of fizzy drinks and eat a diet of cabbage and other green veg! You can visit the bathroom and release the gas, no hassle.
Some of the other 'more-common' problems you could experience are sore skin around the stoma (usually caused by an ill-fitting pouch, barrier creams/powders available to help with this), leaks (again an ill-fitting pouch and you can put sealant paste around the stoma to help), odour (you'll learn what foods cause odour plus you can get deodorant drops to put into the pouch), gas (talked about that above), 'noisy' stoma (unless you produce lots of gas this shouldn't be a problem. You are wearing clothes, so this dampens the sound slightly and although you know what the noise is, others will think it's just your stomach rumbling!).
I'm sure your husband would be only too glad for you to get your life back. My wife was so supportive when I had mine done and she even offered to change the bag for me when I first had it done whilst I came to terms with things. She has seen me without a bag on whilst I have changed it and to be quite honest I don't think the red spout on the abdomen is a big deal.
Advice I would offer:
- Do lots of research
- Get some sample bags and wear one on your abdomen before you make a decision (make sure you wear it in the right place!). Wear it empty at first, then fill with a little water and then a bit more to get used to the 'weight', learn about any inteference with your clothing, any adjustments to your dress that you need to make. Being male I can't offer any advice there! Not everyone produces the same type of output, some always produce very watery output but I don't unless I have drunk lots of liquid
- Talk it through with your family, your fears and tears, your frustrations, your anger and the fact that you will need their continued support and understanding. Don't try and do it alone.
- If you have the op, stop thinking that 'joe public' in the street knows you have a bag whenever you are out and about, they don't!
- If you have the op, get your life back and enjoy the things you haven't been able to.
Apologies for the long reply but it's an important decision for you to make.
Good luck with your decision.
NU (UK)
I've had my ileostomy since April 2002. I only empty it about 4-6 times a day, and I can take some Imodium and not produce any output for hours. It's really manageable and you don't have to 'burp' it either. There is no urgency at all as you can feel it filling up and plan a trip to the loo.
I've managed to get my life back on track since having it. I have been in remission since having it done, and have returned to full time work in a higher position (money for the bills.. phew!!) and started a degree course. I live life to the full now- no more being tied to the toilet in agony.
I certainly recommend it.
I've managed to get my life back on track since having it. I have been in remission since having it done, and have returned to full time work in a higher position (money for the bills.. phew!!) and started a degree course. I live life to the full now- no more being tied to the toilet in agony.
I certainly recommend it.
26, from the UK, Crohn's-colitis and ileostomy.
I couldn't say it any better than the people above. I had my ostomy surgery in '85 when I was 18 and a freshman away in college. I told them "I'd rather die," and they said "you will," and that was the end of the conversation. It was a very hard adjustment to make at first, but it was definitely worth it. Not having to run to the bathroom really changed my life. The one-piece I use is really thin, so I'm still able to wear sexy clothes and get away with it. Good luck to everyone.
I haven't had a chance to post a reply sooner but I wanted to tell everyone that posted "Thanks" for all of your information, stories, and support. I have decided to go for the J-pouch and my surgery was the 10th of November. My distal colon was shot-thin, inflamed, and would probably have torn easily in the next few months if I had not chosen surgery. One problem that I face now is that my small intestine is anatomically shorter than expected...so my outcome after reducing my illeostomy is not gaurenteed-I may have several BM's a day due to the shorter transit time...
The first few weeks after the surgery have been a challenge-finding the right appliance, figuring out what foods affect me, and coping with the change. My husband is an awesome support and still finds me attractive, my kids are enjoying thier mom being home, and my energy is slowly returning-they sent me home from the hospital with the flu so it has taken me even longer to recover.
Again your stories and information you provided was extremely helpful and I really appreciate it.
Tracy .
.
I have had my bag for 9 years and its not that bad, you would know when to empty it and there would be a stoma nurse to teach you all about it
thanks, Dusti
Diagnosed with colonic inertia at 13 years old, had my colon removed.
Diagnosed with rectal inertia at 16 years old, had my rectum removed and had a jpouch made.
Diagnosed with small bowel inertia at 18 years old, and got an ileostomy wich I still have. I am 27 now.
If you want to know more, just ask me!
thanks, Dusti
Diagnosed with colonic inertia at 13 years old, had my colon removed.
Diagnosed with rectal inertia at 16 years old, had my rectum removed and had a jpouch made.
Diagnosed with small bowel inertia at 18 years old, and got an ileostomy wich I still have. I am 27 now.
If you want to know more, just ask me!