New ostomy patient, new to board

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Meilandra
Regular Member


Date Joined Feb 2004
Total Posts : 30
   Posted 2/10/2004 3:47 PM (GMT -6)   
Hi,

My name is Anita, I am 46 yrs old, with an 11-year history of UC on and off the first half of the 11 yrs, and Ulcerative proctitis (rectum only) for almost all of the second half.  My colon suddenly self-destructed starting in October (didn't know that then), by early Dec. I was in bed a lot of the time from fatigue and pain, and by the 31st I had lost 20-25 lbs and couldn't get out of bed.  They hospitalized me for malnutrition and dehydration on New Year's Eve, and 10 days later they told me after some tests that my colon was the worst they'd seen in a long time, and it would have to be removed, which they did.

They couldn't remove my rectum at the time because I was too sick and malnourished, so apparently I am a good candidate for a reversal sometime later this year if my rectum manages to stay healthy.

Has anyone had the experience of a reversal but then had to have a permanent ileostomy done because the reversal didn't work for some reason?  Any idea where I can find statistics on that?

Can someone please explain a reversal without a pouch, just a straight reconnection?

Has anyone had the experience of having food sensitivities pre-operatively, that continued after the ostomy was done?  I was told that with my colon gone, I should be able to eat anything I want, but I'm not sure that wheat isn't causing some problem because my pulse shoots way up high and my heart pounds after I eat it, but I definitely don't have celiac.

I saw a post about having to burp a bag, I usually have to do that a couple of times every 24 hours too.  I'm not worried about what foods I'm eating or what might be causing it because I've been on a restricted diet for one digestive problem or another since I was 20 -- more than half my life! -- and I'm so excited about being able to eat everything that I'm just doing it, the heck with gas.  Besides, I'm still 25 lbs underweight and am supposed to gain all of my weight back before they can do the reversal, so I'm just having fun and being grateful doing it!!!

Anita



lionheart
Regular Member


Date Joined Dec 2003
Total Posts : 43
   Posted 2/16/2004 1:29 PM (GMT -6)   
Good to I hear you are feeling good. I'll keep my fingers crossed that you stay healthy. I didn't notice any reactions to food after my surgery, so I'm not to sure what to say about your palpitations?? As for bag burping and gas I really notice it after dairy products, milk, yogurt, etc... But I'm in the same mind frame I don't really restrict my diet I just deal with the gas! But one warning!!! You might want to limit foods with seeds, remove them if you can....even little seeds like those in tomatos, cucumbers, seseame seeds on buns, in bread, even strawberries, and raspberries. They can cause blockages as they stick along the walls of the bowel. Last summer I couldn't help myself and I ate some strawberries. I ended up in the hospital with a bowel obstruction.....luckily it worked itself out and I didn't have to have an operation but I was in a whole lot of pain and I was pretty scared. Ever since then I have been pretty careful, but occasionally I eat a berry or two and maybe a seed or two slips by...and I've been fine...I just really try to limit the number of seeds, just in case.


Sexywithabag
Regular Member


Date Joined May 2004
Total Posts : 90
   Posted 5/5/2004 1:52 AM (GMT -6)   
Well it's been a few months since the last time you post from what I can see I hope everything is going well for you and I hope you're almost where you want to be as far as the weight gain for your surgery.
God Loves You!


Sexywithabag
Regular Member


Date Joined May 2004
Total Posts : 90
   Posted 5/5/2004 1:52 AM (GMT -6)   
Well it's been a few months since the last time you post from what I can see I hope everything is going well for you and I hope you're almost where you want to be as far as the weight gain for your surgery.
God Loves You!


Meilandra
Regular Member


Date Joined Feb 2004
Total Posts : 30
   Posted 5/5/2004 6:14 PM (GMT -6)   
Hi,

I didn't know until today that there had been replies to my post, as I forgot about the site soon after I posted! I found out two weeks ago that my rectum is too damaged from the years of proctitis to be usable, so I am going to have it taken out sometime later this year. I'm actually kind of relieved, as they couldn't have guaranteed the outcome of a reversal; i.e., it was entirely possible that my quality of life could have been worse than it is now with the bag, which I've gotten used to by now. My quality of life is very high with the bag -- I've even gained 33 pounds in about 11 weeks -- Eek! (Amazing what the body can do when it's absorbing nutrition!)

Any feedback on any aspect of this surgery from someone who has has it would be appreciated very much. :-D

Anita

Sexywithabag
Regular Member


Date Joined May 2004
Total Posts : 90
   Posted 5/5/2004 7:21 PM (GMT -6)   
Well I had both taken out at once. THAT was the only surgery I had. I never faced having a reversal and I was pissed off about it too. But, I've learned to live with my bag just as well and yes it makes a big difference. AND you can't just drop a bomb like that and expect people to just forget you! (((((hugs)))))
It's good to hear you're feeling better.
God Loves You!


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1190
   Posted 5/6/2004 1:37 AM (GMT -6)   
I had my rectum and anus removed a year after my inital ileo surgery - that would have been 26 years ago and back then it was just as big an op as the ostomy itself. I'm not sure about now tho.

There are two ways of removing the rectum. Some surgeons stitch the wound up (faster healing) and others leave it open to heal from the inside out (less chance of infection but longer healing time).

One thing I will advise you to do is to buy a waffle cushion beforehand because you're going to need it to sit down on for a few weeks afterwards. I used a donut cushion but apparently they're out of favour now because they can pull the incision in your backside apart (I had no problem with it tho).

You'll also probably experience phantom rectal pains. This is completely normal, altho it's something doc's often forget to warn about. Just like a person who loses their limbs can still 'feel' it there, so your body will be slow to realise there is no longer an opening down there and will think it can still go to the loo in the 'normal' way. Just go sit on the loo, even tho you know nothing will come of it, until the urges pass.

Good luck.

http://www.ostomates.org
I'm not a complete idiot - some parts are missing!
________________________________________________

Ileostomy for 27 years since I was 10 years old, due to UC.

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