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ileostomy reversal!

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Posted 3/31/2008 7:43 PM (GMT 0)
hello ive just come across this site and wondering why i never found it sooner. you are all so supportive of each other and i think thats great!

i was diagnosed with CD last year in march just before me 19th birthday. sad   i didnt even know what it was before i was diagnosed. anyway, i had been in pain for months to the extent i could harldy walk! i was put on pred almost straight away but unfortunatley the disease had spread that much that the meds werent working. i opted to have surgery for a bowel re section in july of last year. (fri 13th of all days!lol) it didnt quite go as planned and i ended up with an ileostomy due to big abcesses and fistulas. when i came round, icouldnt quite believe what was happening.as well as that suprise i ended up with a really really bad wound infection and now have a horrible scar. i had some down days i can tell you but always picked myself back up.

after my surgery i thought that i was never going to cope with having a bag but it is suprising how quickly you get used to it. its like you go into survival mode and you do evrything you can to just get on with it, but soon enough it just becomes part of you and part of your routine. it doesnt really change anything about you and from my experience of the short time ive had one it just makes you understand more about yourself and how strong you can be when put in suprising situations and eventually you realise that your no different to anyone else your just that little bit more special! :-)

the thing is my ostomy is only temporary and i think im going to miss the bag abit when its gone! is that weird?! i am booked in for my reversal on the 4th april so would love to hear from anyone who has had this done. some advice would be grealy appreciated.this has definatly made me have a different out look on life and i wouldnt change it for the world.

thanks angel88

 

Posted 3/31/2008 8:12 PM (GMT 0)
Angel,

You are a brave, very mature-thinking person with a wonderful outlook. Kudos to you! And best of luck on the 4th.

I've been in your shoes, many years ago. I was diagnosed in the late 70's, had a temp. ileostomy (didn't even know what it was until after I had it!), had it reversed, had many resections after that as well, and ended up with it permanently in 1984. I have been disease free since 84.

There are others on this forum who have had reversals more recently than mine, so I will defer to there advice.

BUT, I do want to say that now that you know what CD "feels" like, you will never be blind to those symptoms should they poke their nasty head up again!!! You have gained a lot of knowledge and maturity and depth of personality.

p.s. Thank you for posting to the HW.com forum and welcome!!! Good to have you.
Posted 3/31/2008 8:29 PM (GMT 0)
thank you peggy. your definatley right there. once you have had those symptoms you can never forget what it feels like!
im still adjusting to my life with CD and i dont doubt that i have alot yet to learn. but learning i am and im posotive things will get better in time. what doesnt kill you always makes you stronger right!? there maybe a time in my life when i do end up with a permenant stoma but at least i have had the experience already so it doesnt scare me anymore. i am glad that i have a chance at a reversal but the thing is i still have active disease in my bowel and that worries me for when i have the op and how long i will be free of pain.has anybody had active disease while having a ileostomy? is it rare or quite common? angel.
Posted 3/31/2008 8:37 PM (GMT 0)

Angel,

Did you have any of your diseased colon removed at the time you received your temp. ileo? *if you don't mind my asking?  How much CD do you have and where?  I'm a nosey sort, aren't I?! 

And, YES, you hit the nail on the head..... "what don't kill ya will make ya stronger!!!"  My momma always said that one!

Posted 3/31/2008 8:49 PM (GMT 0)
i have CD in my rectum and abit further up in my large bowel. i had it in the ileum but that was taken away along with some of my large bowel on that side. cant quite remember how much. just know that i had two abcesses that had eaten through that part of the large bowel and were really really bad. had a fistuala going from the large bowel into the small bowel but that was sorted. so now just have it in the rectum part and a bit up.
Posted 3/31/2008 9:31 PM (GMT 0)
Hi Angel,

Welcome to the forum, I too am waiting on my date for reversal, I have had mine since Feb 06 (temp) but just waiting on my date coming through any day now.

Good luck on the 4th and let us know how it goes,

P.s I think I will miss my bag too, strange isn't it!

Gillian x
Posted 3/31/2008 9:59 PM (GMT 0)

Angel88

I too, had a temp ileostomy I did not expect!!  I waited my 3 months and had it reversed.  You have to pay attention to your body and make sure you let your Dr. know of any problems you experience after the reversal.  You may have to find the right medication(s) that will help your body with what is going on.  The best thing to say is as long as your disease is active, you have to stay on top of your treatment.

My problems were similar to yours, and I eventually had another ileostomy (like you, I knew what it was like to have one) and went on to do just as much, if not more with my life.  Keep up the positive attitude and educate yourself as much as you can.  This site is great to find out all the little things you weren't sure about!!

I hope all goes well on the 4th and you'll be home before you know it:)

Posted 4/1/2008 12:28 AM (GMT 0)
angel welcome

i too have cd in the rectum and a little further up, as well as in my ileum. And my disease is currently still active...still draining from fistulas which sux b/c im waiting for this to stop b4 my reversal. Im hoping it will happen soon. The surgeon thought six months, but i have yet to find a cocktail that will address these fistulas.

My pain was unbearable as well...ii couldnt walk, would ride in the car to the er on my stomach...id rather have the bag than deal with that, as u've already said we somehow just push thru it and it becomes part of ur routine.

I pray ur surgery goes well, and dont b a stranger! just because u have a reversal doesnt mean ur not part of the osty family lol...besides ur experiences may help someone else!
Posted 4/1/2008 2:39 AM (GMT 0)
there are some people who have had a temp ostomy and decided to just keep it. You always have that choice, and of course if you have problems iwth the jpouch or absoltuely hate it, you can go back!
anyway, i do know what it's like to be sick all the time, and it sucks!
i wish you luck!
Posted 4/1/2008 9:19 AM (GMT 0)

thank you to you all for your advice and your own experiences im sure they will benefit me.

im not on any medication at the moment for the active part. it isnt causing me any pain but surely they should have me on something so it doenst get worse? i was on pred for such a long time at 40mg most of that time and i put a hell of alot of weight on! sad i came of the pred 3 months after my surgery and havent been on anything since. the steroids were keeping the bit in my rectum at bay so thats why i was able to have my first surgery but it came back as soon as i came of them. that bit has never really caused me any trouble but you would have thought they wouldv'e put me on something to kep it at bay? will this effect my chances of success in surgery?

thank you all for your support and i will let you all know how it goes.

angel :-)   

Post Edited (angel88) : 4/1/2008 3:46:06 AM (GMT-6)

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