Desperate for Relief: Seeking Advice on Ileostomy

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BarnWizard
May 29, 2014 1:04 am

Hey everyone. My name's Andy. I'm 22. I have Ulcerative Colitis. I've officially had it now for 4 years but I first started having symptoms in 2009 so really I'd say I've had UC for just over 5 years.

In short, I can't live with it anymore. It's ruining my life. I seem to have annual flare-ups, each one being worse than the last. So I've had 5 proper flare-ups. I'm not accounting for the odd times I've had accidents or just "bad days". If I'm counting those, the number of flare-ups would be in the hundreds.

The last flare-up I had lasted from end of August 2013 until February 2014.

My point is that I know that I WANT an ileostomy. I want to be rid of my Ulcerative Colitis for good. It's affecting every part of my life. I can't leave the house in full confidence anymore. I hate how I automatically keep a mental note of where the nearest toilets are wherever I go. I dread long car/bus journeys. I am nervous about going to new places. I'm really getting tired of taking medication every day. Over the last few years, my UC has affected my social life, sometimes severely. I'm struggling to look for a job effectively. It even ended up causing the end of a very good relationship I had in 2012. I can't relax anymore. Even though my symptoms have calmed down considerably since February, I'm not 100%. I can't shake the fear of another flare-up. My UC has taken me to the very depths of depression, after my last flare-up I had 10 weeks of therapy. I hate my bowels. I want to be me again.

I last saw my doctor in the beginning of March this year. He said he wanted to see me again in 3 months' time, so I'm hoping he'll be in touch about another appointment very soon. When I saw him last, we discussed medication mostly. He thought that I could still carry on with my Mezavant XL and see how I go OR I could have bumped up to Azathioprine(?) I think that's right. All I really remember about that was the HUGE range of side effects he listed off. It frightened me, so I decided to see how I did on my Mezavant XL. I've been okay, for the last couple of months I've been great actually. But lately, my insides have been a bit touchy. It's thrown me off completely. I'm not experiencing any pain or bleeding, just an increase in bowel movements and quite a bit of tenesmus (you know, feeling the need to have a poo but there's nothing)

Even so, I know that I WILL have another flare-up sooner or later. And it seems that there's nothing I can do to stop that. I mean I eat well, I don't drink, I don't smoke, I keep as active as I can, yet I suffer annually from crippling flare-ups. :'( I'm not living the life I SHOULD be living at the age of 22. I truly believe that my UC has robbed me of some of the best years of my life. It's ruining what I have left of them.

I was given numerous booklets and information packs about IBD, Crohn's, and Colitis when I was in Hospital, (it made for some kickass bedtime reading *sarcasm). I have read up ALL about ostomies and stomas, and the life people lead with them, so I know exactly what I would be getting myself into. I have watched some videos from a channel on YouTube called OstomyLifestyleFilms, and they have inspired me to get the ball rolling for myself. I just know that my quality of life will be improved so much, I will be able to be me again. I know it would be life-changing, but being told I had Colitis was life-changing. And I know that I would have the ileostomy forever, but that doesn't scare me. I was already told once that I would have Ulcerative Colitis forever.

I had a phone call with my IBD specialist nurse yesterday morning. She understood where I was coming from. She told me that if I am well right now then the doctors would not suggest something like surgery to me, but if I was adamant about it then something could get sorted for me. I know that a lot of people don't have a say in getting an ostomy, they might need it because of an emergency or because of truly failing health, but I'd rather not wait for either of those situations.

I know this site is full of awesome people who have/have had all kinds of bowel trouble, a lot of folks have ostomies. I really just want to know if anyone has ever gone and asked for surgery like I want to do. If so, how did you go about approaching your doctor(s)? Does anyone have any tips for me in what I could say to perhaps persuade my doctor to get me sorted out for an ileostomy?

I would really appreciate any advice, someone please get back to me,

Thanks a lot,

Andy

Monsieur Le President
May 29, 2014 3:40 am

I developed UC at 20.

I suffered from it for 8 years, in and out of the hospital, etc.

I knew from the first time it was diagnosed that eventually I would have an ileostomy.

My brilliant surgeon said that I should just tell him when I was ready, but warned that there was a danger of cancer if the flare-ups continued.

I discussed it with my wife after recovering from one attack and decided that following the next attack, I would ask for the operation.

However, you must be aware that it is not the easiest thing to accept or to live with, and the decision to have the operation is one that you should discuss with as many people as you can, particularly health professionals.

I have been fortunate and have had 40 years with no problems from my ileostomy. I had a total colectomy and removal of the rectum and anus.

Best of luck, whatever you decide.

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Bill
May 29, 2014 5:43 am

Hello Monsieur Le President.  I didn't have UC but did have all the worst of the symptoms you describe.  In my case every doctor I saw said that eventually I would have to have an ostomy and they would have done it whenever I wanted. However, for many years I resisted and struggled on with chronic incontinence and pain.  Eventually it all got too much and I agreed to have a Colostomy. I often look back and feel that I should have gone down this route much sooner as it gave me a new lease of life.  There are different things to 'manage' now but I no longer have the intense pain and the embarrassment of faeces coming uncontrollably from my anus. It's so much easier to manage the ostomy and I now live a relatively 'normal' life (whatever that is).

Best wishes  Bill

BarnWizard
May 30, 2014 12:49 am

Thanks for the reply.

Would I be right in saying that the surgery is not something that some doctors would suggest unless you were very bad, but if you ask for it then would just make sure you know what you're getting into before saying yes?

I feel like I would rather have the surgery while I am in good health rather than have it when I'm poorly, you know what I mean?

Is there anything specific that you might recommend that I say to my doctor? I mean, I feel mentally prepared for the stoma. I have educated myself thoroughly for the last 6 months. I feel like I'll need to maybe convince my doctor that I'm not rushing into it without thinking about it.

Thanks,

Andy

Primeboy
Jun 01, 2014 3:31 am

Hi Andy. How about saying, "Goodbye." Seriously.

For years, I went to a doctor who treated my ulcerative colitis. Sometimes he would increase my Asulfidine, other times he would decrease it. Year after year, I was miserable but he kept playing with the same medication without any positive results. I often felt like Tarzan; instead of swinging from one vine to the next, however, I swung from one toilet to another. Finally, at my wife's insistence, I went to a different doctor, one of the best in the metropolitan New York area. From that first appointment on, my quality of life improved substantially.

The medical student who graduates at the very bottom of his or her class is still called "Doctor." Shop around. There are some good ones out there. Good luck!

  PB

 
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BarnWizard
Jun 01, 2014 11:20 pm

Hey there,

I must admit I have been making some very negative assumptions. I don't know what my doctor will say when I mention an ileostomy. It might all go perfectly. There won't be a need for any "convincing".

I never thought about trying to see a different doctor though. I'll keep that in mind if things don't play out at my usual hospital.

It seems that my question has been answered though, "Can I go and ask for an ileostomy?" It looks like a yes. And that makes me happy. The last few days I've felt a little calmer knowing that I can fix myself. I'm starting to like this site.

Thanks, man

ron in mich
Jun 02, 2014 8:03 pm

Hi barnwizard, don't go to your doctor asking. Go and tell him that your quality of life sucks for a person your age and an ileo. An ileostomy is the only option now, and it's up to him to convince you it's not. And if his answer doesn't satisfy you, find another doctor. Show him you're confident you can manage an ostomy. Good luck.

countrybreeze
Jun 05, 2014 2:52 am

Hey Andy - my hubby went from 50 bowel movements a day and 30 different pills with ointments... medical bags carted everywhere and constant pain meds... in 2008-09 to... to living a productive and successful life in 2014! Even though his ileostomy is a permanent one... it has not stopped him or even slowed him down... he was a very sick person but after all the severe pancolitis was completely removed... he got rid of the problem... don't let anyone tell you that you can't be normal with an ostomy... you can! Press on... the outcome is better =) ;=)

61smiles
Jun 05, 2014 4:48 am

Hi Andy, I had UC from 1978 until 2010 when I had an emergency ileostomy. I didn't have much choice, but I honestly had never been told about ostomies and didn't know I could have asked for one before then. At first, I was so happy (besides that I was alive!) because I thought my problems would all be gone and I would just have some inconveniences. And there are many advantages, especially the risk of colon cancer being 0 now. I used to have to get colonoscopies very often and many times had polyps removed, once 15 of them. But be aware that you will still need to know where the restrooms are. Still have accidents sometimes. Still worry about bus rides and long trips. Will probably get a hernia and maybe some serious complications like ulcers. I have been practically totally homebound for over a year because of the two ulcers on my hernia. They are so close to the stoma that it's very hard to get a good seal. For a while, I was having to change my bag 6 times a day. Very heavy bleeding from the ulcers. There are many things that will cause you problems just as bad or worse than the UC. You will not always get UC attacks as often as you've had so far. You will go into remission and it could and probably will last for years. Then it will come back. I would consider all the angles and maybe wait awhile before making the big jump. Remember the hernias more than likely will come back after being repaired. If you get your ileostomy at 22 or 23 years old, you have about 70 years to try living with a hernia without too many more operations. It took two operations to get my permanent ileostomy completed. I'm trying to hold off as long as possible for a hernia repair. Each operation only makes the abdomen weaker.

I just want you to consider everything. It's not as rosy as some might have you believe.

Orfa

Zywie
Jun 05, 2014 10:49 am

I have not put my two cents in this topic because I have not had or have the medical problems you did, Andy. Mine was cancer-related and everything happened at the speed of lightning for me. I had a colostomy last summer. I only wanted to say, "I agree with 61smiles."

BarnWizard
Jun 09, 2014 11:28 pm

Hey everyone, me again.

I really appreciate everyone's input. I'd like to thank everyone for reminding me to think about it before I decide anything, because that's really the best advice that you guys could give me. But I can assure you that I have thought about the ileostomy through and through. I know in the grand scheme of things that 10 months might not really be an incredible length of time, but I've thought about the surgery option for almost 10 months now, all the pros, cons, everything. My mind is well and truly made up.

By the way, 61smiles, you said that even if I get the ileostomy, my UC will at some point come back. I'm sorry, but I know that to be incorrect. I mean, if I didn't have my large intestine, then there is no way that I would have UC anymore, like at all. If I had Crohn's, then yeah, I could still get some grief every now and then... but I know for sure that a total colectomy is more or less a cure for Ulcerative Colitis.

That being said, you're right in saying that everything's not rosy on the other side after surgery. I know that my Ulcerative Colitis will be replaced with other problems like the threat of hernias, blockages, just the overall huge change to my body to suddenly have to deal with having a bag on my abdomen for the rest of my life. But I have prepared myself for all that, as much as I could possibly have done so at this point. I know you were being realistic with me, but it came off as very negative more than anything else :/

In response to countrybreeze, that's a real nice story about your husband. I can relate to the 30 pills a day, constant pain meds. They found that my last flare up of my colitis was Total PanColitis after a "pleasant" Colonoscopy *sarcasm*. It's nice to hear that he conquered the crap out of his bowels. I like to think we are all Gut Warriors. High Five him from me :D

@ron in mich too, I like what you said. You've really nailed my original question on the head, so thanks :) I don't know when I'm supposed to be seeing my specialist doctor again. I was told it SHOULD be in June, but I would have gotten a letter by now, I think. However, I was told that he is a little backed up lately (they always are lol), so it might be July. Whenever it is, you can bet I will go in there and be as clear and confident as I can be. Thanks for the good luck (Y)

I believe that if I get an ileostomy, I will become a different person. I will be the me I used to be before I ever got my first UC symptoms, I miss that guy. I've talked it over now with my parents and my older sister. I've also told my 3 closest friends who are the 3 brothers I never had, we've all known each other since we were 4 years old, they won't think any different of me, I won't care if anyone else will, but they won't. All they care about is my health and wellbeing. I've gone over it all with everyone who matters to me and everyone has told me to go for it. So I know I will be supported like F**K, I already am with my current UC condition.

I've already accepted that my life will be forever different with an ileostomy, but that doesn't frighten me at all. I have always been a bit picky with my food, I never liked anything too complicated, so any change to my diet throughout the recovery wouldn't faze me. I know that the whole procedure of going to the toilet would be a different story altogether for me; emptying the bag a few times a day instead of pooping normally, but hey, with UC I haven't had "normal" bowel movements for almost 5 years, so big what? I'll enjoy not having the urgency that holds me back from so much. I'll welcome the disappearance of the whole of my lower abdomen cramping up so much that it wakes me from my sleep. I actually love the idea of being able to fully relax, go out, live my bloody life.

...( I feel like there's a UC pun/joke there with the "bloody life" comment but I won't say it lol)

Anyway, thanks again everyone,

Andy

iMacG5
Jun 10, 2014 5:14 pm

Hey Andy, I compliment you on your attention and responses to all the input you're getting.  I'm not qualified to agree or diasagree with some of the good folks here because I didn't have the same Dx or post surgical experiences.  Mine is a permanent colostomy after CR cancer.  I have a small hernia that might get larger and I have a bag to contend with but I'm alive. I poop differently from normal people but thanks to some brilliant, caring, unselfish folks on this forum I do almost all the things I did before.  Well, I don't hit it as far as before.  I'm alive because I was blessed with bright doctors who did not think of an ostomy as a failure but rather a cure.  You can screw around with drugs and get no better and, perhaps, worse.  You've been given lots of "help" here but please remember there's only one YOU.  We're all a little different.

Get yourself a good doctor like PB suggested and your life will be exponentially improved.

Respectfully,

Mike

ellabelle
Jun 12, 2014 5:26 am

Hi Andy, I have to put in my two cents here, as I was in pretty much the same situation my freshman year of college. I tried every drug therapy imaginable, went through some pretty gruesome side effects, and finally I saw a new GI doctor who suggested the ostomy surgery. No other doctor I'd seen had even mentioned it as an option, and when he mentioned the surgery it felt like finally someone understood the pain I was experiencing every day and exactly how far I would go to make the pain stop. Yes, in some ways having an ostomy is a huge inconvenience. You will have days when you hate it almost as much as you hated having colitis-- the days when you have leaks at inconvenient times, especially for the first few months when sometimes you have to get out of bed at 3am or duck out of a party or a date to change your bag (awkward)-- it's rough, but in the end it's worth it. People who have never had IBD don't get how wonderful it is to be able to take back control of when you go to the bathroom, and to not have it hurt every time you eat something that might cause a flare. It blew my mind the first few days I was out of the hospital (by the way, having the surgery while you're young is far easier than dealing with it in middle age or beyond-- I was mostly recovered, enough to go back to school, in two weeks). And there's always the chance of blockages, hernias, and other problems, but I'm sure you're well aware of the risks. Overall, I'd say it's absolutely worth it to have an ostomy, but only you (and a doctor who really understands your needs) can decide whether it's right for you.

BarnWizard
Jul 01, 2014 4:44 pm

Thanks ellabelle :) I'm due to see my doctor in about 2/3 weeks actually. Since the last time I added to this thread, I have found myself in a slight flare up AGAIN :(

I'm really bummed out about it because I haven't slacked off on my medication like the last time I flared up. ...There seems to be no reason for this one. It's simply that over the last few weeks, my bowel movements became softer and softer. My toilet visits have increased from 2 a day to 4/5 :( *EXTREME SAD FACE*

Today I'm having my first foam enema. I was on the phone to my IBD nurse yesterday, she got me a prescription for them. It's called Colifoam(?) I'm not too happy about it, I don't like the idea of an enema, never had one before but whatever at least it's not a colonoscopy haha. I have enough of the stuff for 4 weeks.

Have you ever had to have steroid enemas? If so, how did you respond to them? My nurse told me that I won't experience nearly as many side effects (if any) as from the oral steroids, since the foam is more of a topical medication, but I'm still a little nervous. I was told that I should see an improvement after a few days, as regards my diarrhea and bleeding, I hope that's the case.

I'm not experiencing any pain, which is good. Apparently, that means that my inflammation is probably just in the first part of my rectum/large intestine, so I've been given these enemas to (hopefully) stop this flare dead before it does any real damage. I really hope it does help me. I've got a family holiday coming up at the end of July and I'd really like to be alright for then. :(

Anyhow, I'm gonna stay in touch with my nurse over the next couple of weeks and let her know what's going on with myself, whether I'm good, bad or if nothing's happening. So, I've been booked in to see my doctor again in about 2 or 3 weeks. I'm definitely going to request the ileostomy surgery because this is just ridiculous now. I've enjoyed 5 months of relatively good health after my last extreme flare up, but now my body's losing it again. Suddenly, everything's getting thrown off for me, my social life, looking for a job, my summer in general, everything :( I want it to be over.

Immarsh
Jul 08, 2014 6:38 am

Hi Andy,

Reading about your medical situation really brought back memories for me. I was sick as a young child, 12, and knew nothing about the option of surgery. It was the first thing a doctor suggested, but my parents were horrified and said no. They found "top" NYC doctors who were willing to treat me with different medications. So over a 4-year period, I was in and out of the hospitals, out of school, on all different types of medications, until at 15 I developed osteoporosis and had to go off of the steroids. My body was bloated, I was scarred from stretch marks, had already had a drug-induced ulcer... and it was time for surgery. I was 15 when I had it done, and 19 when they removed the anus (which never healed). I had to fight for that since the doctors wanted me to keep it, in case the future brought medical technology to "revisions". I even fought that... telling the doctors and my parents that I would never take the chance again. And so now, at 65, I've had my surgery for more than 50 years. You are old enough to tell your doctors what you want and how you want to live your life.

Ironically, I have two grown sons (40, 42) both who have IBD... one has Crohn's for nearly 30 years, and the other has had a spastic colon since birth and then developed symptoms of Ulcerative colitis about 20 years ago. Both have been able to control their conditions with medications. However, the wife of my younger son (UC) developed MS and after doing research she put herself and Jay... and their two little boys, on a strictly vegan diet designed for people with inflammatory conditions. After a year, Jay was off all medications for the first time in 18 years, and Angela's MS is in complete remission... with all brain scans being clear. Is that a miracle? I don't know, but it was worth it to her to try something other than drugs. If you're interested in reading about her research... go to Cookingformyspirit.com.au. Her website is filled with articles and research about autoimmune diseases (like arthritis, MS, UC) and guidelines if you are interested in the diet... I've done some things (eliminate dairy and red meat) and even though I have an ostomy, other conditions I've had have improved. Best of luck to you.

Marsha

mdq58
Jan 24, 2018 7:04 pm

I was diagnosed with UC when I was 14 (back in 1972), 4 years later I had surgery and I've had a colostomy for 42 years now. The surgery allowed me to go to college and lead a full and happy life. I think you need a consult with another doc. My 2

elledubuque
Dec 20, 2022 7:39 am

Heya!

You've had so many great responses, so the only thing I have to add is making sure you do whatever needs to be done to ensure insurance covers your surgery and the supplies afterwards.

My story is longer than I want to type now, but one reason I went straight to surgery and no chemo/radiation first was because their biopsy did not show cancer on the front end. By all looks of it and a CT scan saying it had gone through 3 layers of my colon, the doc said "tissue is the issue" and unless we have it, insurance will not cover chemo/radiation.

Long story short was my post-surgery pathology did find cancer after all, but luckily associated lymph nodes tested clear. Then my resection failed and I had to go in to the ER to have it repaired and add my colostomy. When I got home from the hospital, I was treated to a letter from the insurance company stating that my $100,000 surgery wasn't medically necessary, so they weren't going to cover it. They ended up getting the post-surgery reports and covering it, but that letter scared me pretty bad.

Basically, I learned that insurance is going to do whatever it can to not pay for expensive stuff. So if you have to prove a track record of pain, bad reaction to pills, lack of being able to function normally, inability to hold down work, get all those ducks in a pretty row to make sure you'll be covered.