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Anyone had an elective ileostomy?

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Posted 12/5/2007 11:41 AM (GMT 0)
Hi all,some brief history.I was diagnosed with UC in 1995(procto-sigmoiditis).Since then I guess I've flared up an average of every couple of years,but some years have been pretty bad,seeming to go into remission and flaring again a few weeks later.I've been on Azathioprine a couple of times,for about 18 months each time and been pretty well on it for the most part.However.it's a drug I really don't like to be on.I'm also tiring of frequent bouts of nausea,which I attribute to all the various scripts(permanently on Asacol tabs,pred for flares).

I'm also tired of the constant uncertainty,and never being able to plan things in advance without knowing how well I'll be when that time comes.
I've sort of ruled out the j-pouch,as I gather there are still a lot of loo visits,can be some incontinence and there's always the threat of pouchitis.I just think I'd rather use a bag and never have to run to the loo,or worry where the nearest loo is again!

Has anyone faced a similar dilemma and decided to "bite the bullet" and get an ileostomy?Was it a good decision?I'm going to see a GI in January and am tempted to ask if it's a viable option.Any and all input is welcome,maybe you haven't had one,but are thinking along the same lines.
Posted 12/5/2007 6:20 PM (GMT 0)
My screenname says it all....I am "Glad" to have my "bag"

it was my choice to get a temporary ileostomy surgery and now I am so much better!

not completely better, but I don't have UC, I have Crohn's, which seems to be a bit more stubborn...

for me, it was an obvious good choice.
Posted 12/5/2007 8:07 PM (GMT 0)
Silent,

I had to elect an ileostomy. I would not change my decision for a second. It has completely saved my life. I have a friend who also elected to have the surgery a year before me. She told me, "I would not sell my ileostomy for a million dollars." She helped me to make the decision to get the surgery. I hope her words help you. Like you, she also suffered from UC.

I hope this helps.

Good Luck
Posted 12/6/2007 12:20 AM (GMT 0)
Hi Amey,thanks for the kind words.Can you just clarify,is your ileostomy,or your friends(rather pertinent to me,as she also has/had UC)permanent?This is the actual procedure I'm contemplating you see.I'm not looking to "rest" my colon,or a hiatus from meds.I'm either going to continue being a UC "sufferer"(as we know,that means in remission or not)or I'm going to accept a change in the way my body "exits" waste.You should also know I live in the UK,I can't call the shots on my treatment.They may just say it's distal and I don't qualify for surgery,I really don't know.

I guess we could all post a very long essay on our condition;suffice it to say that I'm at a "crossroads".I've had good times,mediocre times and ******g awful times.I just want an end to unpredictability.The last year has been BAD,I don't want to go back on Azathioprine,so an Ileostomy seems sensible to me.If that's not the case,please be honest.

Also,just as a small footnote;what really seems worse;the removal of the Colonic function(re-hydration etc)or retention of the problems of IBD(rather numerous,if you factor in drug side effects,nutritional depletion,blood loss,pain,fatigue etc).

Maybe I'm just trying to convince myself,as I said before,please be honest,all input is appreciated(I can only do this once,after all!).
Posted 12/6/2007 2:23 AM (GMT 0)
Silent,

My Ileostomy is permanent. That is not to say that I do not have a rectum, I do. However, putting my intestines back to my rectum would just put me where I was before...and that is not a life I want to back to. My friend is the same. She has her rectum, however, her ileostomy is permant. To be honest, having an ilestomy is not bad. It is an adjustment. It is not like losing a limb or being blind. It is just a new way to poop. My kids think the bag is awesome! I am the only one in the family who can poop while I eat, cook, run, and drive.. Not many people can say that. My ilestomy stituation is differnet than most because removing my colon did not remove the disease. My intestines is paralyzed...this includes my small intestines so I still suffer with symptoms that most do not. I called my friend on the phone to get her biggest complaint about having an ileostomy. She said she could not think of a complaint. I begged her to come up with one complaint...just one. She finally said that she has to eat more than she would prefer because she finds that she can lose weight easily. However she wanted me to remind you that this really isn't a complaint. She rather enjoys eating. For me, the best part is not having pain anymore. I am not stuck in the bath tub with my bum feeling raw and burning like fire. I do not have stomach cramps. I do not sit on the toliet and cry anymore. I do not have to take medications for my suffering, and so on. My life is so much better. If I had the choice to do this surgery all over again with everything I know now, I would still choose to have the surgery.

I hope this helps you. Please, go back and read the posts of others on this forum. Most of us have ileostomies and would not trade them in for anything.
Posted 12/6/2007 4:28 AM (GMT 0)
Here is my biggest complaint, i have switched to putting stuff in my left pocket instead of my right pocket, i thought that better after i stuffed a pair of earrings in my right pocket, because i am bad to put everything in my pocket, and after they had been in there for about two minutes, i realized that could spell disaster, lol.
Anyway, i elected to have surgery, i had UC also, and I was tired of being sick. I will admit, i didnt' try many meds, I never tried any enemas, and i actually only tried four meds and remicade, but i didn't want to try anymore, i felt like i was just wasting time waiting to see if something would work, or it might work for a while, and then fail and i was always waiting for the other shoe to drop (is that a saying in the UK?) anyway, it was a great decision! i wish i had done it the day i first saw blood, i wouldnt' have wasted 8 years, and honestly now that i look back i feel rather stupid that the only thing that kept me from doing it before was that i thought it would be gross to take my poop in the kitchen. How stupid is that, lol. Anyway, it's not the most super fun thing in the world, but its 10thousand times better than UC, and it's alot better than waiting for a cure that may never come. I hear alot of people saying they aren't going to have surgery because they are waiting on a cure, and when i did decide i got it into my head that i would wake up from sugery and brian williams would be on tv saying that there had been a medical miracel and UC had been cured. But i got rational then and realized that there could possibly be a cure, but it wasn't worth wasing my time on a cure that may come sometime in the future, and may not work for everyone, when i could get cured, right away!
mine is permanet. And it is pretty neat to not have to worry about the bathroom, or worry about if you have gas that it will smell up a room, lol. And if you think about it, even though you empty your batrhoom more often than a person with a normal colon goes poo the regular way, it takes them longer than it takes me. I can get in and out in about three minutes, i timed myself at work one night, i took a call, took an order back to the kitchen, went and changed my bag, messed with our awful toilet that you have to flush at least twice to get even one piece of toilet paper down, washed up and got back to the front in five minutes.
anyway i think i got off of topic, lol. The side affects from, UC are so much worse than the risk of becoming dehydrated, that won't happen often if you drink enough, and if you do start to get dehyrdated, you will learn what that feels like, and just chug some water down and you will be fine.
I think that you will love life once you have surgery!
good luck
Posted 12/6/2007 12:45 PM (GMT 0)
Thanks for the info summerstorm.I am going to mention it to the GI in January and see what she says.Yesterday and today have been solid poo,so the doubts now start to creep in again!I have to keep reminding myself that the next flare is just round the corner,but that it wouldn't be the case if I had an ileostomy.I'll post the GI's response on here after I've been.
Posted 12/6/2007 5:06 PM (GMT 0)
Yes, I elected to have surgery due to UC. However, I opted for a j-pouch. I would venture to guess that most surgical cures for refractive UC are done electively rather than as an emergency.

Sue
Posted 12/6/2007 11:43 PM (GMT 0)
Suebear,I see a long list of remedies you had tried in your signature!Would you say I might be being a bit hasty in my contemplation of surgery?To give the bigger picture,I'll give more of my med history;
1995 first dx;Steroid enema,followed 2 weeks later by Asacol tablets:Remission
1997 first flare;Asacol and steroid enema's for 2 weeks,no change.Hospital IV Hydrocortisone for 1 week;home for 2 weeks on oral pred,enemas,Asacol suppositories.Back in Hospital for 2 weeks,IV again(all the while on enemas and suppositories).Home for a week,meds as before(when home).All this time,no remission.Saw GI,I think 3 months later(20mg's pred in the interim),put on Azathioprine.A couple of months later,REMISSION!

Since then,it's been many months(sometimes a year to 18 months)of remission,followed by a flare.But the last few years,at least every other flare takes anything up to 3 months to get under control.I do have better times on Azathioprine,but still have minor flares,and don't really like this drug(does anyone?).Permanently on Asacol tablets,plus Pred,enemas and suppositories for flares.Also tried Asacol enema before,that is truly awful.A big WHOOSH up your bum,and more urgency than the UC follows,and they expect you to retain it?A complete joke!

As I say,I have had long periods of trouble free time,but the fear is always there.My biggest concern with surgery,is the "no turning back" thing.If I feel it's a mistake afterwards,they ain't putting the thing back in!Of course,I could have the surgery,and be over the moon the darned thing is gone!

Thanks for reading,if you got to the end of this long winded post!
Posted 12/7/2007 1:44 AM (GMT 0)
Silent Lucidity,

 

Welcome to Healing Well. I'm glad you found us. I didn't know anyone with an ostomy before I got one, so after 7 long years of living with Crohn's, I got my temporary ileostomy kicking and screaming. But, to my surprise, I ended up LOVING IT!! :-)

 

The first thing I noticed was being able to sleep through the night without being woken up several times to go to the bathroom. Then, I could go shopping without having to use the restroom several times. My life stopped being controlled by my disease, and it was wonderful.

 

After 8 months of letting my colon rest, it flared badly and bled for several days. That's when I knew that it was time for it to go, so I scheduled surgery to remove my large intestine and rectum. It was the best decision I've ever made!

 

My ileostomy is now permanent, and I feel 100% healthy again. It is as if I never had Crohn's. I look back on those years like it was a bad nightmare. My ileostomy has been a miraculous lifesaver for me. I love not being sick anymore and not having to take prednisone, azapriothine, and all of the other meds that I was on.

 

I mostly love not being in pain. It is completely gone, and I thank God every day for my renewed energy and health. For you with UC, surgery is a cure. It will never return, so if you're ready to live a healthy life without UC, then I say, "Go for it!" Having an ileostomy is so easy that I honestly forget that it's there. Whereas Crohn's never let me forget that it was there.

 

Please continue to ask questions, because we're all here to help. And keep us posted on how you're doing and what you decide to do.

 

Take care,

Cecilia


Posted 12/7/2007 3:47 AM (GMT 0)
Hi Cecilia.Thanks for your input,it is appreciated :-) As I say,my main concern is that I do spend a lot of time in remission,and am concerned how I'd feel after an op.Chances are I would be going into theatre(theater for you US guys!)in remission.So then I come out with the initial pain AND "the bag"(sorry to put it that way),only to realise that this is the way life is for good(not the pain,but the ostomy).

This may seem rather weird,but sometimes I wish I was ill more often.That way the decision would be so much easier.As it is,when I'm relapsing,I want it done,when I'm in remission.,I don't!I have been on anti-depressant's over the last ten years,and now don't even feel like they help much.The disease is playing as much havoc with my mind as it does my Colon!

Maybe I should just rationalise things;I'm only 36 years old,there should be a lot of life in me yet!I can wait for ten,twenty............forever years for a cure.Or get the op,spend the recovery and adjustment time,and just get on with that ten,twenty.........however long I may have time!

I also have a constant eczema problem on my hands,and had a perianal abscess this year that required surgery(that REALLY HURT!).I'm sure that both are UC related.In fact,a lot of the problems I go to my GP(doc)now,he generally mentions that they may be UC related.Surely a bigger case for removal of the darned thing?!?!?!

So blah,blah,blah(not a belittlement),there are others on this forum(both general and ostomy),much worse off than myself.But that's my story,and I apologise for any selfishness.I just need to know what to say next month,when I see the GI.I consider myself a learned man,but get tongue tied in conversation,especially with such pertinent matters!
Posted 12/7/2007 3:09 PM (GMT 0)
Sweet Lucidity,

One of the questions a CR surgeon would ask you in a consultation is how your quality of life is. If you feel your disease compromises your quality of life than surgery should be evaluated as an option. For me, I was adamantly opposed to surgery and therefore tried everything in the book to gain remission. Nothing worked, I was steroid dependent and I felt my quality of life was low. I couldn't make commitments, plan vacations, or do anything except for work. I was 42 years old and felt that my life was over with and that UC was going to dictate the next 40 years of my life and I found that depressing. I wanted my life back! I had always been healthy and physically active. UC took all that away from me but lord knows I gave it a good girl scout try to combat. In hindsight I wished I would have had surgery sooner rather than waiting the 2+ years to make the decision. I think if you posted your question on the j-pouch.org board and asked others what it took for them to make a surgical decision you would get a wide variety of answers. I know how hard the decision is and therefore I recommend you get a surgical consultation. That may answer lots of your questions. Knowledge is power and it comes from research!

Sue
Posted 12/7/2007 10:04 PM (GMT 0)
Silent,

How many times a year are you ill? Are you married? Do you have a good relationship with your spouse? These are the questions I would be thinking about. If I only had a couple bad days a year and I was single, I am not sure I would opt for the surgery. Suebear is right when she talked about "your quality of life ." How would you rate your quality of life in a scale of 1-10 with 1 being the worst and 10 being completely healthy with no illness. Before my surgery, I would have rated myself as a 2. I have to agree with you, if your symptoms were worse, you would have a much easier decision to make. You are definitely in a tough spot and I think you are wise to be here asking these questions. Doing all your homework will definitely assist you in the decision making process. I have to say, if my quality of life before the surgery would have been a 6 or better and I was single, I would not have opted for the ileostomy. Not that having a bag is bad, it is just an adjustment both mentally and physically.

Good luck.
Posted 12/8/2007 12:24 AM (GMT 0)
Amey,thanks for such a direct and accurate response!I am still single(sometimes seems like an affliction at this age!),and for various reasons(not health related)living back at home with my parents.But it's not a case of a few bad days a year,more a case of a few bad weeks or months,every couple of years.

Maybe I can clarify a few things by explaining an aspiration of mine.Being that I'm still single and living back with my folks(also been in the same job since I left school and it ain't the same place I started at!),I really would love to just "flee" it all and travel.Maybe Europe,maybe the USA(been to California,Florida,Arizona and Nevada many moons ago,absolutely loved it),just a very long expedition.I'm pretty sure I could get ostomy supplies in these regions quite easily.Flaring,blood tests and scripts?Nah,starts to get difficult methinks!(Cost wise at least).

So there you go,that's my main motivation for an ostomy,FREEDOM,to the best degree I think it's available(to one in my position).As things are,I can go anything up to a couple of years in remission,and still be too afraid to cut loose from my present life.So now I have really expunged,that's why I am considering such drastic measures.I was dx at age 23,I'm now 36.I've spent over a third of my time on this planet living in half measures and fear,all because of the threat of UC.A lot of the time it's not a case of being sick,just the threat of it.

Another point is body image;I don't consider the "look" of a bag an issue for me.The only thing I worry about is "mechanics",will it leak;will I get an infection;will it pull away from the stoma?These are the things I worry about;not the actual manner in which I poo!

So any and all input is appreciated.You guys here are really so supportive,I just hope newly diagnosed UC'ers stumble upon this board.Internet forums were still in their infancy back during my first flare!Still,even then it was a great comfort.
Posted 12/8/2007 1:28 AM (GMT 0)
Hi Silent Lucidity

I had my ileo surgery at 10 years of age due to UC. Like you, my parents were worried that the minute I had surgery, a cure would be found. 31 years later we're still waiting!

I'm an Aussie and have travelled to the UK, USA, Singapore, Hong Kong, Thailand and most of Australia without any problems. The longest period was for 8 weeks - 6 weeks in the USA then straight on to the UK for 2 weeks. I just took all my supplies with me (they don't take up much room really) and I never encountered a problem on any of my trips. I've been on rollercoasters, swim every summer, ridden elephants and camels, been rock climbing, etc and never has my ostomy been a problem.

I won't lie, you probably will get leaks - esp at first. But once you've experimented a bit and found the right appliance set up for you, those leaks should become few and far between. The only times I leak nowadays (usually at 4am in the morning while I'm sleeping) is when I've been lazy and haven't changed my bag when I should have, ie it was MY fault!

Would I trade my ileostomy back for UC? Not on your life! I LOVE not having to look out for the nearest loo wherever I go, not having to take handfuls of pills each day, not having to watch what I eat and best of all, not having any pain!

I'm single (by choice at the moment) but have been proposed to by two different guys over the year. Most guys don't care how you poop - they're just greatful you're alive and well and able to be with them.

Good luck with your decision.

Posted 12/8/2007 2:03 AM (GMT 0)
Hi Silent Lucidity,

I recently had a reversal of a Loop Ileo after a year of having it. I can say with all certainty though if I was to have a recurring problem i would elect to have a permenant one at a very early stage. The only reason I decided to have the reversal was that the docs couldnt tell me exactly what was wrong and the condition could have been caused by a bacterial infection rather than crohns.

As far as supplies go (I'm also UK based) the company that I used (Fittleworth) were more than happy to provide supplies even when you are abroad. Something I can personally vouch for as I had to have supplies delivered to a hotel in Vienna, Austria as I stupidly misplaced my bag containg 90% of my appliances. All at no extra cost, although if you had a permenant Ileo all the supplies and delivery etc. are covered by the NHS.

Gra

Posted 12/8/2007 2:44 AM (GMT 0)
I had my first colostomy at 20 and was not mentally prepared. My Dr. reversed it after 6 months mainly because of my depression. I continued very ill for another year until I went back and told him I was ready. I had the surgery and had a colostomy for 11 years. It was a lifesaver. I got married after the surgery and 4 years after had a baby and 3 years after that another. The colostomy saved my life. I was able to have it reversed 1 1/2 years ago and am doing great. You just have to be at a point in your life where you are ready to feel better and know that you can mentally handle this decision. Good Luck.
Posted 12/8/2007 4:13 AM (GMT 0)
Silent,

If your goal is freedom, you can definitely achieve it with this surgery. I have a lot more freedom than I had before and I am rarely in any pain. As far as leaks go...well, your wearing a bag with poop in it 24/7 so leaks are probably going to happen. I have had my ileostomy for 4 months and I have had a couple leaks but mainly because I was learning how to wear the appliances. Now, the only reason I have a leak is because I am trying to wear my appliance for 7 days when I should have taken it off and applied a new one on day 6...this is just me being stupid. An ostomy is like anything in life..if you buy a car, it will need repairs, if you take a trip, your lugguge might get lost, or if you go out to eat, you could get sick from the food. Life has bumps. They just happen. You can't avoid getting an ileostomy because it may have some bumps. If your goal is to travel and not worry about your next episode of UC, then an ileostomy is the way to go. As far as learning how to have an ileostomy and applying a bag to your stoma, it just takes a few tries and you'll get it. It is like driving a car. We are all nervous to drive at first, but I bet you get in your car now and you do not think about how nervous you used to be with you were a teenager. You just get in the car and drive. Well, it is like that. The first time you change your bag in the hospital and nurse will help you. In fact, nurses are almost always available to help you even when you go home. The one thing about having an ileostomy is that you always have a resource of people and nurses ready to help you. You will be a pro in no time!

I truly hope you find the answers you are search for.
Posted 12/8/2007 4:58 AM (GMT 0)

TammySue said...
I had my first colostomy at 20 and was not mentally prepared. My Dr. reversed it after 6 months mainly because of my depression. I continued very ill for another year until I went back and told him I was ready. I had the surgery and had a colostomy for 11 years. It was a lifesaver. I got married after the surgery and 4 years after had a baby and 3 years after that another. The colostomy saved my life. I was able to have it reversed 1 1/2 years ago and am doing great. You just have to be at a point in your life where you are ready to feel better and know that you can mentally handle this decision. Good Luck.

Tammy,

Can you tell me about your experience with being pregnant with a colostomy? Were there any complications? I'm currently weighing my options and am wanting to start a family before I get a reversal(if I decide to anyway). I have an ileostomy and my surgeon has given me his opinion of having the reversal before starting a family simply due to the risks involved with having an ostomy during pregnancy(bowel obstruction, twisting of the bowel). Any and all information/advice is greatly appreciated.

I apologize for getting a little off topic here. :-)

Posted 12/8/2007 11:57 AM (GMT 0)
Silent,
I can completely relate to how you're thinking! I am 36 years old, too, and had some pretty good years of remission while I was taking Remicade. After it stopped working, I too had a perianal abscess that had to be surgically opened up, which really hurt!! I was given a temporary ileostomy after that happened, so the wound on my butt could heal without getting infected.

That's when I found out that having an ostomy was not a bad thing, like I thought it was going to be. It's just a different way to 'go to the bathroom', that's all. And there isn't one person or animal on this planet that doesn't have to do that!

Personally, I've enjoyed not having the urge to go or having to find a bathroom quickly. It does have many positive benefits. Most of all, it's an option, just in case your disease stops going into remission, and you need to do something to save your life. If you're experiencing long remissions, then enjoy! But, if you feel like UC is taking over your life in a negative way, then there is a way out, and it's a very livable solution to the problem.

You should check out our photos on photobucket.com. You can't tell that any of us have ostomies. The user name is crohnsdisease and the password is 6mp3asa. You can post a photo, too!

Take care,
Cecilia
Posted 12/9/2007 5:26 AM (GMT 0)
cecilia is right, those pics will be a big help!

I understand what you are saying about wishing your disease was worse, i had gotten to where i was taking so much immodium jsut to function that i actaully hoped i would get toxic megacolon from it so i wouldnt' have to decide.

I am not that much into traveling, but i would like to go to greece, and i could never have done that with UC, and we went on a cruise a while back prebag and i could have gone to see Mayan ruins, which i wanted to so bad, but there aren't any bathrooms at the ruins, so i missed a once in a lifetime chance.

Don't let UC take once in a lifetime chances away from you.

Posted 12/9/2007 2:14 PM (GMT 0)
OK I am over here from the ulcerative colitis. My husband is really not responding to drugs eg lialda and now 3 weeks of prednisone and Rowasa. .... I think there are some more pharmacological attempts after this but he is 61 and we really do not want to spend 2 years sorting this, and trying that when an ileostomy would solve all.... and we could get our lives back and get on with parties and trips..... and for him golf.....
I mean how soon after diagnosis ( for us Nov 2) is it reasonable to ask and be open to for elective ileostomy.... I mean not to-day but in next months..... I suppose one has to feel on has attempted all other routes?
Thanks Chloe.....
Posted 12/9/2007 8:00 PM (GMT 0)
In response to Ashe

Well both my pregnancies were very different. First my Dr. told me to never get pregnant. I did not listen. The first time I was pregnant with my son and I felt great.I had a wonderful, event free pregnancy. I did have an c-section at 8months 1 week, because my ob-gyn was afraid to let me go any longer. My son was fine. My 2nd pregnancy with my daughter was a completelt different story. I had morning sickness 24/4. I started pre-term labor at 6 months, which they tried to control with medicine and bed rest. My water broke at 7 months so I had an emergency c-section my daughter weighed 4lbs5oz, but was healthy. She had to stay in the hospital a few weeks until she weighed 5lbs and her lungs were more developed. My children are now 12 and 9 and healthy. Having a baby is a very personal choice. I think we know our bodies better than Dr's, and we know what we can handle. The best advice I can give is to have a grt gastroenterologist and a grt ob-gyn who will work as a team.

Posted 12/12/2007 11:13 AM (GMT 0)
Well,I've now felt my normal self again for the last week or so.So of course,an ileostomy is already losing it's appeal.Still tapering the pred,currently down to 15mg,so fingers crossed!Thanks to everyone for your input.I'm still going to raise the subject with the GI next month,as I'd like a surgical consult.At least that will help me for future reference,as it's always going to be a possibility I'm considering with each flare.I'm hoping we can adjust my maintenance meds and also avoid using Azathioprine again.I've used Asacol for ten years now and it makes me nauseous,so I'm going to ask if Colazol might be an idea.I'll post in this thread after my GI appt and once again,thanks for all your responses and kind words of support.
Posted 12/16/2007 3:17 AM (GMT 0)
Hi Silent,
I also have had UC since 1995 and I am tired of living like this. I came on here to ask the same question. I have had so much trouble with my rectum, I don't want the j-pouch, I want the ileostomy and my rectum removed. I am tired of being on the tiolet and the burning and pain. I am tired of all the meds and the side effects. I also have recently developed UC related arthritis and I am only 27. With flare ups and joint pain combined, I feel like a complete shut-in most the time... on the few good days I have, I run myself ragged trying to get everything done because I don't know what I will feel like the next day. I would love to keep in touch with you since we both have the same situations sort of. I want the surgery, but it is so final. I am scared but I want my life back.
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