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Total colectomy - or live with the disease?

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Posted 12/5/2009 7:48 PM (GMT 0)
Sorry if this is a repeated post here - but I would really welcome your feedback!

I was diagnosed with proctitis in 1997 and UC in Aug 2006. Since Aug 2006 I have flared constantly and bled every single day apart from a few weeks when on very high doses of prednisone. I have been hospitalized. I have left sided to my splenic flex - and it is still spreading.

None of the drugs work (apart from high dose pred which I refuse to live on) and I do not want to take Remicade or the like because I am very concerned about the long term consequences for the immune system and I don't think it is well enough researched (particularly long-term issues). Of course - I completely understand why people do take it!

I am on LDN with little help :(

I am very anemic and my iron levels are way down.

Some times I run to bathroom over 20x/day. I have 'accidents'- quite alot. Most of my BMs are blood/pus.

I am exhausted all the time - apart from when on Prednisone :)

I can no longer work full-time. I am 34.

I have changed my diet, etc, etc.

Surgery - I am quite keen - but my surgeon think that given my frequent incontinence and spinal cord damage (from accident as a child) J pouch might not work and I would need the perm bag.

My question is - from your experience - even if I had the permanent bag or poss a K pouch - is it likely that I would feel alot better (exhaustion, etc) and that would make up for it?

Also, do the other symptoms go away (skin probs, eye problems, arthritis symptoms in hands, lower back, etc)?

Thanks so much for any thoughts.

Clicky
Posted 12/6/2009 12:57 AM (GMT 0)

Surgery for UC is 100% for improving quality of life.

You can have your sphincters tested to see what type of strength you have before opting for surgery.

You can also consider a k-pouch over a permanent ileo if a jpouch is ruled out.

I have never regretted my decision to have surgery.

Sue

Posted 12/6/2009 2:14 AM (GMT 0)
Thanks Sue. 

I wonder if a J is tried - but doesn't work - if it can be turned into a K?

Or maybe when there are continence probs now I should go straight for a K?

Tests were done on my rectum and the results were not good - reverse paristalsis aparently made worse due to spinal cord damage.  Therefore docs not keen that a J would work.

Therefore I really need to be as sure as I can that even if I was stuck with a bag my quality of life would nevertheless be much better!

I am so thrilled to hear that it went well for you - and its also great to hear you feel so much better :)  Thanks for your feedback.

 

Posted 12/6/2009 3:07 AM (GMT 0)
My 18 year old son was very ill with UC. Early Sept he had his colon removed and will have a J pouch built the end of January. He is a new person!...he is off all medications, has blood tests that come back NORMAL and has more energy than he can remember. Of course he would rather not have the ileostomy but it has given him his life back. If the J pouch does not work, for what ever reason, I know he will be just fine.
Posted 12/6/2009 3:30 AM (GMT 0)
Dont think of it as stuck with a bag! I chose a bag, and its great! So much better than UC!!!

While i was sick i had skin problems and i have had to wear glasses since 4thgrade. After surgery, i still have the skin problems, but they arent nearly as bad, and my eyes went from -675 and -650 to -550 and -525. So that was a plus.
Helped a lot with the being tired, and of course some of htose problems are side effects from meds, and when they meds are gone that solves that!
Anyway, when the diseased colon is gone, the disease is gone, so you will feel better!
Posted 12/6/2009 3:45 AM (GMT 0)
Dear Colliecat and summerstorm,

Thank you so much for your replies and for taking the time.

I really am starting to think that this is the right answer. Summerstorm, I was happy to hear that you concider the bag far far better than UC! That is what I was hoping - but really wasn't sure!

Thanks again for your replies and encouragement!

Clicky
Posted 12/6/2009 4:13 AM (GMT 0)
and just so you know, noone will see it or smell it! i know that is a common misconception, one i had also. If you want to see soem pics of us to see that for yourself. you can go to photobucket.com
and the user name is
crohnsdisease
password
6mp3asa
Posted 12/6/2009 4:38 AM (GMT 0)
I've had my bag for 33 years (since I was 10 years old) due to UC and there is no way on this earth you would get me to trade it in for my UC days again. There is no comparison. Having my ileostomy gave me my life back! It really doesn't interfere with my life that much at all. I change it once a week (takes me about 5 minutes if that - will definitely take a little longer at first though until you have your change routine worked out), and empty it between 4 - 6 times a day (a couple of minutes each time).

Compared to when I had UC and was taking umpteen dozen tablets a day, running to the loo all the time and hoping I made it on time, blood transfusions, having a strict diet and generally feeling miserable all the time, having a bag is a piece of cake!
Posted 12/6/2009 1:34 PM (GMT 0)

And yes you can go for a jpouch and if that doesn't work out try a k-pouch.  You can also go from a perm ileo to a k-pouch.  Since you have other contributing health factors in that area I would seek the most qualified CR surgeon in your state.  If you need recommendations just ask.

Sue

Posted 12/6/2009 11:06 PM (GMT 0)
Clicky....do it. My rectal muscle was ruined due to a fissure repair surgery gone awry and I had little to no control over BM's. I was in the washroom for 2 hours before work, would have to stop multiple times at washroom's on the way in to work, would go numerous times while at work and then I'd normally be ok in the evening. I am the queen of poopy undies. I don't think there is a square kilometer in Alberta that does not have evidence of my mishaps. I just had the surgery on the 23rd of Nov. which included a perm. colostomy and total rectum removal and although im still recovering, I know this is the best thing I could have done. In fact, my husband and I went to a Christmas party last night (ok, I stayed 1/2 hour...lol) and on the way there he says....."Every time we go out it's you that has to stop to go poop....but we need to stop because I need to go poop" I laughed like a loon!!!!!!! Honestly, we had to stop so my husband could poop. I never thought the roles would be reversed. Quality of life has been an issue for me for 12 years and I think if there is a way to get it back, do it. Good luck with whatever you decide!

-Allie
Posted 12/6/2009 11:44 PM (GMT 0)
Clicky,

My diagnosis was Crohn's, and the symptoms were identical to yours. It was terrible. My heart goes out to you.

I lived like that for 7 years before having a proctocolectomy and permanent ileostomy. I wish I would have done it years earlier, because my quality of life is wonderful now. I am disease-free and do not have to take any medicine anymore. I'm healthy like I was before I ever got sick. It is truly an amazing miracle!

I highly recommend being rid of UC and having the surgery.

:-) Cecilia
Posted 12/16/2009 10:27 PM (GMT 0)
Thank you all for your encouragement and for taking the time to reply :)

It is now booked - he is going to try JPouch over two ops to see if it works - part 1 in early Jan!

I am so grateful for this forum!!!  It has really settled my mind knowing that for many people things have worked out well.

How long to people tend to be in hosipital for part 1 and 2?  They have to fully cut open (no scope) due to previous surgeries.

Thanks again everyone.

Posted 12/16/2009 10:40 PM (GMT 0)
Clicky -

Wow, you are struggling more than most. After reading your comments, if I were you, I would opt for a bag. I was 34 when I got my bag and it saved my life. Having a bag has it's own complications - skin irritation, leakage occationally, and such. However, you would not have to run to the bathroom anymore. I just had my bag reversed, but when I had a bag, my family used to joke a lot about how I could poop and drive at the same time. I never needed to pull over. I highly recommend you read up on a friend of mine who has a bag at www.ostomysecrets.com. She started her own line of ostomy underware because she believes you can have a bag and still be sexy!

Good luck with your decision.
Posted 12/17/2009 1:05 AM (GMT 0)
You must feel relieved now that you have made your decision. I am going to give you a different view point than Amey. My son, in 4 months has not had one leak or any skin irritation. He really has had no issues with the bag at all.

I believe that people, after the first surgery, are usually out of the hospital in about a week. Dillon ran into a complication that we are told happens every so often. He had something called ileus. about 5 days post surgery his intestines decided they were not ready to work and just stopped working. The cure was simply time but it meant that he was in the hospital for about 2 weeks.

Any other questions do not hesitate to ask
Posted 12/17/2009 1:58 AM (GMT 0)
Do eeet!
HAVE THE SURGERY!!!!!!
It's soooooo worth it, to feel much better!!
It may seem like a horrible thing at first, but once you get used to things, it's great. I feel great.
I HAD extra-intestinal symptoms with u/c (skin, joint pain, eye probs) and now I don't have them.
I will try for the j-pouch, but if it doesn't work out, I'm fine with having a permanent ileo.

I had it both ways. lol. I had complications too.
The open part, I was in the hosp. for 7 days.
Posted 12/17/2009 2:03 PM (GMT 0)
For jpouch surgery the average hospital stay is 7 days after the first surgery and 3-5 after the second surgery. And contrary to what Amey posted, you don't run to the bathroom with a jpouch but you do with UC!

Sue
Posted 2/19/2010 7:44 PM (GMT 0)
Do the surgery. I had the same symptoms for years and the medications didn't help. I went with a permanent ileostomy though because the pouches can cause lots of problems for a lot of people. I feel better than I have in 10 years and my surgery was only about 4 months ago. Good luck to you!
Posted 2/19/2010 10:36 PM (GMT 0)
Hi Alittlelighter34,

I had part 1 5 weeks ago and dont regret it for one second! THanks to all the people who responded - you helped me have the courage to go through with it!

I have takedown on 1 April - but surgeon has prepared me that if it does not work (due to pre-existing medical issues) be prepared for perm ileostomy. I know I could live happily with that.

I am so pleased to hear that you are doing so well! Fantastic!
Posted 2/20/2010 12:26 AM (GMT 0)
Clicky,
I'm so glad to hear that you're doing well and are happy with the outcome of the surgery! Yay! yeah

Cecilia
Posted 2/20/2010 4:16 AM (GMT 0)
on my photobucket? or the crohns one?
Posted 2/20/2010 7:24 AM (GMT 0)
I just checked, he posted it on our crohnsdisease photobucket page. The password is 6mp3asa for anyone who wants to upload a photo.

Cecilia
Posted 2/20/2010 6:23 PM (GMT 0)
Clicky,

I am so glad that you went ahead with surgery and that you are feeling well. What a relief to be off of all those drugs!. I really am so happy for you!
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