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Who here has an ileostomy for life?

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Posted 4/19/2013 9:50 AM (GMT 0)
Hugs to you Bluegrass and everyone else in the Boston area. I have been moved to tears all week by the strength and courage of the people of Boston and surrounding area. Working in law enforcement, I know the feeling of running in when everyone else is running away. God bless you all.
Posted 4/19/2013 11:39 PM (GMT 0)
Went into surgery 15 months ago for removal of part of the colon due to cancer. Woke up with a permanent ileo. I was 54. No option for a j pouch. A second surgery last December due to cancer returning. Not much colon left. I think I've done fairly well under the circumstances. I've gotten a handle on the pouch. It seems pretty routine much of the time. There could always be a problem down the road but I try to go day to day. I also had UC so I had a constant need to know where the rest rooms were. At all times. Things are much better now.
Posted 4/20/2013 4:20 AM (GMT 0)
Had UC for almost 8 years until I exhausted all the available drug treatments. I am 60 and have had a permanent illeostomy for 5 years. I have had some issues (adhesions and small bowel obstructions) causing hospitalization.

I still battle some depression but overall feel lucky to be able to live my life again.
Posted 4/23/2013 8:19 PM (GMT 0)
Hi I had my permanent Ileo done 8th Jan 13 I'm 46 but I will have it for the rest of my life, but i'm fine with that. When I think of all the problems I had the last 4 years with pain & no quality of life but now am able to do all the things I couldn't do then which I can now is brilliant!! x
Posted 4/24/2013 7:00 PM (GMT 0)
  I have read healingwell for many years, but never posted.  I felt your pain through your post and thought it may help to hear from someone else who has had an ileo for years.  I was diagnosed with Crohn's when I was 12, and had ileostomy surgery in 1995 (not by choice).  I was 15 and at the time thought my life was over.  I am 33 now still have the ileostomy and would not change it if i could.  My health has been so much better because of it.  I won't lie there were difficult times in the beginning (especially when I was so consumed with what others thought of me).  It is a part of me now and its really "no big deal!"  I made it through the "teen years", "college years," "dating years", etc.....I am married (it was never a big deal to my husband or anyone I dated) and am the mother to a beautiful 6 year old.

Good Luck to you!

Posted 4/24/2013 11:40 PM (GMT 0)
Thanks guys :p

Especially crohnsgirl. I would write more, but I'll wait until tomorrow 'cos it's late and I'm tired... >.>
Posted 4/25/2013 12:58 AM (GMT 0)
Went permanant over one year ago (46 yrs old) after about 4 previous years on and off with an ileo and a failed jpouch.
I LOVE my permanant ileostomy. LOVE LOVE LOVE.

Post Edited (ddd45) : 4/25/2013 6:38:17 AM (GMT-6)

Posted 4/25/2013 12:27 PM (GMT 0)
I'm 59 years old and had ileostomy at 38.I wanted a plain Brook ileostomy because I didn't want repeated surgeries and pouch infections.My only disappointment was that my arthritis became worse.I'm now starting on humira for my AS.Anything beats being so sick.I had constant flares and questionable biopsies.You're better off to have it out rather than taking an anti TNF. After your UC is ten years old,your cancer risk increases dramatically.Add an anti TNF to those stats and you're in real trouble.It's a difficult adjustment.I felt much better but was depressed about how disfiguring the surgery was.That lasted for about a year.You'll suddenly realized you don't have to think about it all the time and can enjoy life again.
Posted 4/25/2013 1:48 PM (GMT 0)
I genuinely don't see how anyone can love have an ileostomy. Okay, I'll put it another way: I'm not sure I can ever see myself loving having an ileostomy. The stoma sucks, quite frankly, and not because the surgeon did a bad job. I just don't like having this freaky, pulsating thing sticking an inch out of my stomach! Plus, with leaks (I have had a couple recently, though nothing disastrous), I feel like the whole toilet-going thing has become more vulnerable...

I know it could be worse. I think I'm just down today from a combination of lack of sleep and Oxy withdrawal.

@Zuccazi - I agree, I'm not really comfortable with taking the anti-TNFs long-term. End of the day, if they'd worked, I'd have probably taken my chances and stayed on them for as long as they carried on working. But they didn't, so I had surgery instead. I only had surgery just over 2 months ago. One of the stoma nurses told me that it took about a year to feel completely normal after having an ileostomy. It obviously takes a while to get fully over it and to come to terms with having a stoma.
Posted 4/25/2013 2:02 PM (GMT 0)
No one really loves a stoma. If you're having leaking try convatec convex-it.The nurse that helped me was clueless.None of them live with one.I'm a nurse and found that even certified enterostomal therapists haven't got a clue.I was leaking a lot then went stoma shopping one day and found everything I needed that day and have used the same for 21 years.Be sure to blow dry area well before placing on new wafer.I also use kayara powder after the blow dry so I'm sure that area is completely dry.If you need stoma paste try Eakin seals instead.The r to adjustpaste has alcohol in it and it burns.Get some sleep and kick the oxy, you'll feel better.Give yourself a full year to adjust,it's a real shock to your system and it's difficult to cope emotionally.
Posted 4/25/2013 2:30 PM (GMT 0)
To be fair, I was trying a new pouching system: Dansac 2-piece instead of Dansac 1-piece. The latter have never leaked, so far at any rate. Not sure if I need a convex wafter: thought they were for stomas which are level with, or below, the skin? Mine definitely sticks out :-/

Using seals at the moment, not sure which brand. Everyone seems to mention Eakin seals though, so I think I'll try to get a sample of those.

I'd gladly get more sleep, but I just cannot seem to find a way of doing so. Even if I fall asleep I'm awake 1-2 hours later. Rinse and repeat several times throught the night. Driving me up the wall that I can't just sleep through the night. (I don't nap in the daytime, so it's not that.)

Anyway, all I can do is continue to kick the oxy. I don't have any more, so that's one temptation removed. I will give myself a full year to adjust; thanks!
Posted 4/25/2013 4:39 PM (GMT 0)
NCoT- you are officially cold turkey now? It has to be rough but there is something to be said for getting it over with. I really think in a couple weeks, with that stuff out of your system, things will start looking up and up.
Posted 4/25/2013 5:33 PM (GMT 0)
NCOT are you wearing a clear pouch or an opaque one nowadays? I switched to opaque and it's incredible how much it really keeps the ostomy off my mind... obviously I'm still aware of my pouch and deal with it, but I barely see the stoma itself except during wafer changes and the thought a "freaky, pulsating thing sticking an inch out of my stomach" NEVER crosses my mind otherwise. Out of sight, slightly less on the mind, perhaps?
Posted 4/26/2013 10:49 AM (GMT 0)
NCOT- I have an ileostomy for life and def don't have a choice to ever not have one. I had my first stoma at 28 and I'm almost 33! At first it was mortifying and I couldn't stand the thought of having this bag and stoma for the rest of my life. I don't have Crohns/UC, but a neurogenic motility disease that first affected my colon, then rectum, small bowel, stomach to some degree and now bladder. I woke up from an ER surgery with a loop ileostomy and although I wanted and hoped it would be temporary, it wasn't. After four stomas now, many obstructions, leaks, two failed kpouch's which are diff than jpouch, and no com, rectum, and loss of big part of small bowel I've accepted it's forever. I don't love my stoma, but with time, and I think a year is plausible, I have accepted and know 100% that this little stoma saved my life and I would much rather be alive. It's ok and perfectly normal to grieve the loss of normal function, some vanity, part of your body, etc. My situation did and does cause depression and anxiety, and although its not for everyone, counseling and medication has helped tremendously. Your going through the VERY normal patterns of grieving.

Being a nurse and having suffered withdraw and insomnia myself, you are doing well trying to get off OxyContin by yourself. It's not something you need to do alone and shouldn't do cold turkey. I don't know your situation. Unfortunately, I am still struggling with my health and my pain specialist has me on Fentanyl patches, but at one point I did come off all my meds and I too tried it alone and it nearly drove me insane. I can tell you more what can help with the withdraw symptoms and insomnia if your interested. I'm so sorry your having a hard time adjusting to this new way if life, but here if you need anything. I too, agree that a opaque mini bag has helped me in many many ways!
Lizzie
Posted 4/26/2013 3:51 PM (GMT 0)
Pro - Been 'cold turkey' for 4 days and it's still a b****, but I think today, the 4th one, I'm better than I was on the first two days. Still feeling like I've been run over by a tractor and then poisoned, but the sweats are less intense/common than they were. I literally can't get over how one drug can cause such misery, but I'm naive to the whole murky world of opiate addiction and withdrawals... :/

Pluot - Opaque! But I still see the stoma during bag/wafer changes and that's when it reminds me of a 'freaky, pulsating thing' :-/ At the moment, I'm also feeling quite sore in that general area. I can't lie on it at night either, it hurts too much, so I find it hard to get into a really comfortable sleeping position. That, and other horrible symptoms, such as extreme restlessness, are making me an insomniac, but I am hoping that will get better as the withdrawal symptoms subside.

XtremeMisery - I read your story in another thread :-/ I replied there, so won't repeat it here. I'll just say thank you for your reply! I do think in due course of time I will become entirely used to my stoma. I haven't had much of a break since surgery (although it's been nothing compared to what you've been through), so I've been struggling to feel optimistic and hopeful. Medication doesn't seem to do me any favours at all: I have reacted badly to many meds, including lots of antidepressants. Even when I have been able to find a med I could tolerate, it didn't seem to change my mood particularly. As for counselling, I'd have to go private and that's not something I can really afford.

I do have supportive parents, so that's something. Anyway, I'm definitely interested on what will help with withdrawal and insomnia, if you have the time/energy to reply. Thanks!

Okay, I'd better go - running seriously late now, but I'm only going to the supermarket, so it's not of critical importance... >_>

My name is Miranda by the way. I suppose you all might as well know that about me :p
Posted 4/27/2013 3:20 AM (GMT 0)
Miranda-
I read your post on my thread and again I thank you for all your kind words. Although we've had different journeys, the pain and grieving is the same. I hope in due time you are able to feel a bit of comfort with your stoma. I'm not sure of your age, but I know for me, in the beginning, I too had a very hard time thinking about still changing a bag in my 70's!! Just know that your feeling and the grieving process your experiencing is very normal and eventually you'll get to the acceptance part...again, in due time.

In regards to the withdraw and insomnia. Going 'cold turkey' is not only horribly painful and miserable, but it can be dangerous too :( The symptoms your having are very consistent with serious withdraw. The fact you've made it to day four without going crazy and ending up in ER is impressive. As far as medications, the safest and easiest way to get off opiates would have been using suboxone. It's a sublingual tab/paper that dissolves under your tongue. Suboxone is an opiate antagonist, but has some pain relief measures as well. You actually could still start it and benefit from it and many times for the pain and insomnia it is used in combination with Neurontin and bupronephrine. The bupronephrine is additional pain control without opiates. The Neurontin actually is two-fold. It helps with insomnia and depression/anxiety. These are just a few and I could give you more options as well. Just lmk if I can help...it makes me still feel like a nurse even if I can't work..I can help :)

Lizzie
Posted 4/27/2013 3:33 PM (GMT 0)
God, yes, the thought of still changing a bag in my 70s is grim. Also what if I get arthritis of the hands, or something else which hinders me changing a bag? I'm 38, for the record, so not really young but not really old. Anyway, it's not a great time at the moment, which is probably making my natural pessimism even more pessimistic than normal, but I'm sure in a year's time I'll feel so much better and healthier. Maybe.... :-/

I'm quite honestly surprised that I could develop such a severe dependency in two months, but as I said in my previous post I'm naive about opiate drugs. It's not the first time I've ever taken an opiate - been on morphine drips in hospital, for example - but it is the first time I've ever taken a strong one for two months straight. From what I can make out, the dose was very high as well for most of that time (200mg a day for the first month, eventually weaning down to 60mg before going 'cold turkey'). By the way, I don't think I would have the had the willpower to maintain it if there was still oxycodone in the house - but thanks to my mum, there wasn't :-/

Anyway, it's day 5 of my detox and the more brutal symptoms seem to have subsided: the sweats/chills and extreme restlessness, mainly. But I'm still sleeping badly (partly blame the stoma for that, though), still feel utterly washed out most of the time, quite weak, tired, and down. I'm presuming that's all reasonably normal stuff and will eventually lift? I'm still in residual pain, which feels at its worst when I'm trying to sleep. It's not intolerable but is not very pleasant. Needless to say, I'm almost scared to death of going on another painkiller now. Paracetamol (Tylenol) is useless; ibuprofen gives you small bowel ulcers and is not really great for stomach pain anyway; tramadol apparently produces a withdrawal syndrome quite as bad as any other opiate; and so on... :-/

The problem is that I'm not at all convinced my GP would have even heard of the drugs that you mentioned, let alone know how they should be used. I must admit, I'd be infinitely happier taking such drugs under the supervision of a knowledgeable doctor. But I live in the back beyond of nowhere and am part of a small medical practice which had enough problems getting to grips with drugs like 6MP (mercaptopurine), let alone suboxone... :-/

What about Neurontin and bupronephrine on their own? I'd probably do better off just asking for one med, or two at the most, instead of three...

Also, they don't have any withdrawal effects of their own, do they? No point coming off one drug, only to become dependent on another...

Thank you muchly :p

Miranda
Posted 4/27/2013 3:47 PM (GMT 0)
Okay, I have to vent.

It might be easier accepting having a bag for life if the people on this forum weren't so blatantly obviously looking more forward to their takedown than anything else in the world. Not to mention the bitter disappointment if their takedown is postponed, re the thread from a woman bitterly disappointed that her takedown was postponed by 6 weeks. Yeah, six weeks. I'd be grateful if I could have a takedown in 6 years at this rate. /frustrated

Nobody in their right mind wants a stoma for life, but there's this pretense abounding at the same time about loving your stoma. It's the easiest thing in the world to love something that you know will be gone forever soon.
Posted 4/27/2013 5:27 PM (GMT 0)
@ncot you're right,its hard thing to accept and when you hear about someone with a temporary,all you can do is wish it was you.People hanging on with antiTNF drugs,temporary ileostomy and pouches are in for more illness and surgery ahead.When I had my done,I thought my arthritis would be gone too.I ended up stuck with my ileostomy and then my arthritis got worse.I'm still better off,even though I still have health problems.Is anybody here HLAB27 positive?It runs in my family but it manifests differently in each of us.I'm the only one with an ileostomy. My life would be so much better if I didn't have one,but I do because I needed one.I planned my surgery because the mortality rate is much higher for emergency surgery.I was so sick and my kids were suffering.I really did it for them,so I could take care of them.What's hard for me is when I split up with my husband,I really couldn't date.Even if someone else was OK with it,it didn't matter because I wasn't OK with it and will never be.Twenty one years later I still wish I didn't have one.People say they love their ostomies because they're covering up for the way they feel.I remember saying that too and it made me feel brave at the time but not a word of it was true.You have the surgery because you have no other choice.I find it hard to cope with the idea of how different my whole life would have been if I had never been sick.My life was destroyed by illness.Many times I wish I had had surgery younger so I could have accomplished more.That's what all the grief is about.It's about your whole life being changed by something you have no control over.The only thing that really helps you is disfiguring surgery.What kind of choice is that?
Posted 4/27/2013 6:41 PM (GMT 0)

NiceCupOfTea said...
Okay, I have to vent.

It might be easier accepting having a bag for life if the people on this forum weren't so blatantly obviously looking more forward to their takedown than anything else in the world. Not to mention the bitter disappointment if their takedown is postponed, re the thread from a woman bitterly disappointed that her takedown was postponed by 6 weeks. Yeah, six weeks. I'd be grateful if I could have a takedown in 6 years at this rate. /frustrated

Nobody in their right mind wants a stoma for life, but there's this pretense abounding at the same time about loving your stoma. It's the easiest thing in the world to love something that you know will be gone forever soon.

I admit, I don't like my stoma and never will. I find it an irritant - but much less of an irritant and much less painful than what I dealt with before - the lesser of other evils? However, I have gotten somewhat used to it for the seven+ years I've had it - and it beats the h*ll out of years-old, unhealed, constantly draining fisutlae. I still take low doses of 2 immunosuppressants plus a host of other meds and most likely always will - but I can comfortably eat, sit, walk and am still alive to talk (and complain smilewinkgrin) about it.

No pretense here!
Posted 4/27/2013 7:25 PM (GMT 0)
I am 35. I have had my ileo since June 2012. I had my anus and rectum removed last week so my ileo is permanent. Just wait until I am old and my kids have to change my pouch!
Posted 4/27/2013 7:47 PM (GMT 0)

NiceCupOfTea said...

Nobody in their right mind wants a stoma for life, but there's this pretense abounding at the same time about loving your stoma. It's the easiest thing in the world to love something that you know will be gone forever soon.

All right, my turn to vent. Can't really hold it in any longer. You are wallowing in self pity and choosing to ignore advice and evidence we have given you over and over. Many people on this forum and in the world chose a stoma for life. They've posted about it here extensively, often in response to your claims that no one would ever choose an ostomy. Are you saying they're all delusional? They may be happy but they're "not in their right mind" so they're not REALLY happy?

If you take a quick look around HW you will see a wide variety of situations, complications, pain levels, prognoses. Would you like for someone in a worse state than yours, of which there are many, to waltz in and tell you that your pain isn't valid because your situation isn't as dire? You mock someone for having a six week delay for takedown -- meanwhile there are others here who would kill for a permanent stoma that functions as well as yours, yet you complain too. It is 100% fine to own your feelings because you can only react emotionally to what you're going through personally. I get that. But you need to drop the attitude and recognize that other people's feelings are valid too because acting like you are the only person who is suffering is going to leave you bitter and turn people away from you.

When my healthy friends get a stomach virus they never want to complain to me, or if they say they feel bad they apologize because they know I suffered worse for longer. But you know what? I know it sucks to have a stomach virus! It's not fun! No one's pain is better or worse or more or less real. No one is suffering in a more or less honorable way. Vent all you want but we're here to support each other and the way you're picking on other posters and what they're going through is immature and cruel.
Posted 4/27/2013 11:17 PM (GMT 0)
Oh dear god, okay, in my opinion nobody in their right mind wants a stoma for life. All right, forget everybody else. I don't want a stoma for life. I cannot be any more clear or emphatic than that. If I could have had any other surgery OTHER than a permanent ileostomy I would have gone for it in the blink of an eye. Maybe in a year's time I'll feel differently. I don't know. But I do know that right now this is exactly how I feel and people moaning about their takedowns being delayed by 6 weeks do not change those feelings in the least little bit. Rather, it just serves as evidence to me how nobody - sorry, I mean me - in their/my right mind wants a bag.

So I'm 'wallowing' in self-pity. Fine, put me on ignore. I've been through years of hell, oh whoops, more self-pity. Soz about that, the last few years have been paradise and I adore my stoma. It's so kawaii -_-

Please, from now on, just ignore me or something. I am who I am, and I don't really want to get into trouble for that. Thank you.

@Zuccazi and Nena girl - Thanks for your posts. Read them earlier; wish I'd replied then actually, before the thread got derailed, but I felt too shattered. In a nutshell: I agree with both of you.
Posted 4/28/2013 1:08 AM (GMT 0)
Thank you PLOUT.

And I do LOVE my perm ileostomy. Whoever said no one could possibly LOVE their perm. ileostomy clearly has not suffered in my shoes and has not stepped up to the plate and enjoyed their life since having a perm. ileo. I did CHOOSE a stoma for life after suffering miserably for six years with UC and many more years with a failed jpouch. Yes I CHOSE a stoma for life. And I love my choice and I love my stoma. Do not question my previous post. I do LOVE my perm ileostomy. And I love the life I have been able to live since making this CHOICE.

And NCOT... seems you are physically almost healthy.. so why not try getting out and enjoying life?

Post Edited (ddd45) : 4/27/2013 7:30:07 PM (GMT-6)

Posted 4/28/2013 12:04 PM (GMT 0)
Physically healthy? I wake up feeling like I'm at death's door every day. I can't walk, let alone run, any distance without exhaustion. No, I'm not healthy, I know what being healthy is. I used to be that thing once.
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