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Crohn's Disease Forum » Surgery » Stoma Subforum » I dont want to loose my stoma :(


01-12-2014, 11:32 AM   #1
Ki3
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I dont want to loose my stoma :(

In March we have an appointment with the surgeon about discussing my reversal. It sounds weird but I feel I want to spend more time with Lily.(stoma)

I still have a leak problem, it leaks pretty much daily, which isnt nice, but for some reason a part of me loves having a stoma. I knew it was going to be temporary, although they said 6 months not three...

Is it possible to ask to put back the reversal? I know it sounds crazy but I want to be an ostomate for longer than 3 months and I dont want Lily to go home yet
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01-12-2014, 11:48 AM   #2
nogutsnoglory
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I can't relate to your experience because I can't get rid of mine soon enough! That being said I can't see why they wouldn't let you delay it a little bit if you want. It gives you more time to heal anyway.
01-12-2014, 11:59 AM   #3
UnXmas
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I love my stoma too. Mine was always planned to be permanent. I don't see why you shouldn't ask to keep yours longer. So many people - including doctors - seem to pity me for having a stoma, far more than they ever did for the horrendous symptoms I used to get before the stoma - which the stoma put an end to - which actually made me feel far far worse than a stoma could ever do. I think there's a prejudice against stomas. I don't understand why some people view them as so terrible. I respect anyone who feels differently and hates having a stoma, but I can't really empathise with that feeling that well.

What in particular is it that you want to hold onto? Has it improved your quality of life or gotten rid of particular symptoms which you used to suffer from? I can imagine that the prospect of undergoing another surgery so soon may not be that appealing either.

I've found that I have some weird and unexpected feelings surrounding my stoma too. I don't really think of it having its own persona like some people seem to (e.g. referring to it by a name), but I do quite enjoy changing the bag and making it all nice and clean, kind of like how I feel about my hair when I've dyed it a nice new colour, or how my teeth feel when I've had them professionally cleaned - it feels nice to take care of a part of me. I also find it very interesting to watch the stoma working.
01-12-2014, 03:25 PM   #4
VeganOstomy
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...but I do quite enjoy changing the bag and making it all nice and clean, kind of like how I feel about my hair when I've dyed it a nice new colour, or how my teeth feel when I've had them professionally cleaned - it feels nice to take care of a part of me. I also find it very interesting to watch the stoma working.
I feel the same way. The feeling of having a new appliance on is so nice.
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01-12-2014, 05:43 PM   #5
Absentminded
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I had my Stoma reversed around this time last year after having it for three months and I felt very similar. I very often wish that I'd kept it.

Speak to your surgeon, they may be happy to leave it for longer as it will give you longer to heal.


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Diagnosed: July 2009

Resection and removal of Enterocutaneous Fistula: Jan 2014
Pelvic infection Drainage: April 2013
Ileostomy reversal: February 2013
Ileocecal resection and temp. ileostomy (Say hello to Norman!): Nov 2012
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Past medications: Humira, Infliximab, Azapthioprine, Asacol, Budesonide, Prednisolone, Flagyl, Cipro, Cholestyramine (Questran), Fortisips.
01-12-2014, 06:06 PM   #6
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You can definitely ask your surgeon to put back the surgery. My surgeon did exactly that and actually recommended it to me - not for health reasons but to give me a chance to get back on track with school and just to be out of hospital. So we put it back by 6 months which would mean I would be on school holidays and finished my exams for the year, I could just focus on recovery from surgery.

My parents thought I was a bit crazy at the time and even tried to talk me out of it. It can be hard for others to understand and they can put a lot of pressure on you. Listen to what your surgeon or others may have to say, but that doesn't mean you have to follow their opinions - its your health & happiness not theirs.
01-13-2014, 08:59 AM   #7
Ki3
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Thank you for all the replies,

im one of the weirdos lol, I named my stoma, she is a she, I talk to her, she is a cutie.
I knew I was weird from the start as before my surgery I was praying that I would get a stoma and now I dont want it to go. I like changing the bag (even though it always leaks so at the start its unpleasant) and I like having to look after it and be responsible for it. It sounds crazy, but I have wanted a dog forever, as at my mums we have cats and at my dads I get lonely, but since im not allowed a dog I feel like having a stoma replaces it and although I dont get to do the nice things like hug and cuddle it, I care for it, I clean up its poop lol, and well its also good training for the future.

But at the same time, Im going on holiday in May and it might be to a water park and if my bag leaks in a pool it would ruin it and id feel bad for my friend im going with. But im hoping if I do keep it that long I will have solved the leak issue by then.

I think after some time I will go "I want to poop again" and will say goodbye to my dear stoma, but for now I dont want it to go. I want to choose when it goes.
01-13-2014, 07:26 PM   #8
BowelMeOver
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I'm not certain when you had your surgery for the stoma...is it your appointment in March that will make it 3 months? If so, I don't think the surgeons are pressuring you to have the reversal at their insistence, more that a 3 month window is common, hence the reason you have the appointment.

Reversals are more an optional surgery than a mandatory one, and just because you are deemed fit for reversal, the choice is yours as to when. I believe 2thfairy, one of the lovely posters here, has held off on reversing for quite some time now, with no regrets.

Have the best time ever at the waterpark!
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01-14-2014, 05:11 AM   #9
lc31
 
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Hi

I only have had my stoma 2 weeks and my surgeon says I will be able to have it reversed in 3 months, however after my surgery I spoke to him about not reversing as I am feeling so good. My surgeon says we can wait till the time and then discuss it, I really don't wanna go back to feeling ill and in pain and am enjoying not being on the azathiaprione that pill scares me lol. I hope ure surgeon lets u decide what's best for u :-)
01-14-2014, 06:18 AM   #10
2thFairy
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I have kept my stoma. I was ready for reversal at 3 months, but have decided to keep mine for the time being. I'm just a few days shy of having my ileostomy for 2 years now! Both my GI and my colorectal surgeon said the decision was up to me and that several of their patients with IBD have elected to keep their stomas.
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01-14-2014, 08:08 AM   #11
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Hi can I ask 2th fairy if and when u decide to keep a temp stoma do u need a further op to make it permanent? I think I will follow in ure steps too I have a young family and the ileostomy has just given me such a new lease of life in such a short time, it's good to wake up feeling normal lol! Also I have a friend who had to reversals until her crohns came bag again then she decided to keep her stoma permanent- I wouldn't want to go thru all that.
01-14-2014, 11:14 AM   #12
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Ic31 you have just described the exact way I feel.i asked the surgeon if I could just keep my little friend forever and she said they didn't like people to because it would be bad for me as I won't be absorbing nutrients.i don't know if that's just where mine is or what but I don't want to go back!
01-14-2014, 01:14 PM   #13
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Hi Kat24

My surgeon never said yes or no, he was actually very surprised with the question as I am young-ish (31) lol. He said he has pensioners who can't wait for reversal. I'm not sure about the nutritional side although I am on a lot of vitamins etc but I have taken them since my diagnosis. I had some of my terminal ilenium ( excuse spelling) and a stricture here attaching to colon removed?
How long have u had stoma? My surgeon says 3 months then we will chat about reversal.
01-14-2014, 06:12 PM   #14
Ki3
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Hi thanks again for the replies. Ic31 you said about being young, well Im only 13 so I think they wouldn't want me to keep my stoma as obviously I need to grow and go through puberty so to keep an ileostomy and not get nutrients would slow me down.

My nurse said its more likely to be 6 than three months so I could maybe keep her till June

Also very unrelated, but I am planning on getting a piercing tomorrow and I wondered if its dangerous being on immune suppressants as it might not heal and get infected. Any advice?
01-14-2014, 07:14 PM   #15
Nyx
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A friend of mine does piercing professionally, and she said to just keep on top of it and use bactine to keep it clean.
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Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

01-14-2014, 07:34 PM   #16
2thFairy
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Hi can I ask 2th fairy if and when u decide to keep a temp stoma do u need a further op to make it permanent? I think I will follow in ure steps too I have a young family and the ileostomy has just given me such a new lease of life in such a short time, it's good to wake up feeling normal lol! Also I have a friend who had to reversals until her crohns came bag again then she decided to keep her stoma permanent- I wouldn't want to go thru all that.
If I do decide to make it permanent, it would involve removing what tiny bit of rectum I have (5 cm) and sewing up the backdoor altogether. Currently, my small bowel is connected to my remaining rectal stump and the majority of it is on the nonfunctioning side of the loop ileostomy, so the surgeon would likely also want to form a new stoma that included all of the small bowel so that there is more absorption of food and water.

Because I am doing so well, my doctors told me I could keep on like I am now indefinitely, but with regular checkups. I will need to get a flexible sigmoidoscopy every 2 years to check for cancer in the rectal stump.
01-15-2014, 04:06 AM   #17
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Hi 2thfairy,

Thank you for your reply, it makes things clearer what wud need to happen either way.

Hi k13,

I can understand the nutritional side your nurse is saying with your age and having a lot of growing still to do. As for the piercing question, I reckon if everything was kept extremely sterile and clean (including the aftercare) then it might be ok? I know when I was on immusuppresents and attended the dentist she had to be careful everything was kept clean thru procedures to stop infection? Maybe you could doublecheck with your nurse or consultant to be on the safe side?
01-15-2014, 08:02 AM   #18
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Hi ic31 I'm 24 so they were surprised too!ive only had mine a couple of months but its changed my life so much I'm scared to go back.my consultant said we would leave it for a year and then discuss.3 months seems like so little time as you're probably only just back on your feet from surgery!
01-15-2014, 11:12 AM   #19
lc31
 
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Hi kat24

That's what I was thinking, 3 months getting better then back to the start lol. My surgeon says after that time my nutritional status will be as good as it'll get. However I think he'll give me the option he seems a reasonable man and I don't think he will influence me either way unless it's in my best interests. It's amazing how a stoma can make such a difference in day to day life-no regrets!! Hope you get the option you want Kat24.
01-15-2014, 11:52 AM   #20
UnXmas
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Does anyone know if an ileostomy always has some negative effects on nutrition, or does it depend how much small bowel was removed? Is that a reason that doctors might advise a reversal?
01-15-2014, 02:16 PM   #21
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I haven't had anything removed so I'm not sure how it works
01-15-2014, 05:43 PM   #22
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I was 25 when I had my ileostomy placed. It was emergency surgery and had a ton of issues with infection due to perforation which led to the surgery. it's been 10 months since that surgery and I honestly can not wait to have this reversed! I guess individual circumstances are the factor. Good luck with everything either way!
01-15-2014, 05:50 PM   #23
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Hi UnXmas,

Is it not the end of small intestine that absorbs all the nutrients and that they cannot remove all of this area for this reason??
01-15-2014, 06:58 PM   #24
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The tail end absorbs the most vitamin B.
01-16-2014, 07:32 AM   #25
Ki3
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Thank you all for the replies,
I'm having an appointment with doctor before the march discussion so I might bring it up to her. As Kat said, I've only just started dancing again and I'm loving life, I havnt been pain free for over a year I don't want surgery to put everything on hold again!

P.S we asked the nurse and she said it was fine and I now have my nose pierced If anyone is wondering, less painful than a blood test haha I could do it every day!



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