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Just had colon removed 6 days ago, ask me anything!

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Ulcerative Colitis
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Posted 7/30/2009 3:09 PM (GMT 0)

I just remembered, there is something I've often wondered about removing the colon.  When I first was diagnosed with UC I read up on what the colon does... From what I understand, a lot of the absorption of food occurs in the colon, does it not?  That is why when your colon is inflamed and your waste gets rushed through the colon, you start getting all kinds of health problems because you are not absorbing a lot of the nutrients your body needs.  Plus a lot of water gets absorbed by the colon, and that is why our poop comes out mushy, not enough water gets absorbed in that phase of digestion.

SO, my question is... if the colon is removed, what happens to that phase of the digestive process???

Posted 7/30/2009 3:52 PM (GMT 0)
your colon absorbs water and things like salt and some of the B vitamins. Most of the nutrients go in through your small intestine. As your body learns to adjust your small intestine will start absorbing all of them. however you will still lose water and salt and b vitamin (in some cases) absorbtion, so you just drink extra water and salt and sometimes take a b vitamin complex. thats all you have to do.
I just drink 120 oz of water a day, and sometimes if i remeber take a b vitmain that absorbs under my tounge.
Posted 7/30/2009 4:49 PM (GMT 0)
So, if you have the J-pouch then will you never have solid stool?
Posted 7/30/2009 4:56 PM (GMT 0)
Interesting, thanks for the info.
Posted 7/31/2009 1:42 AM (GMT 0)
I dont have a jpouch, i have a perm ileo, and i wont ever have solid stool. I dont think jpouchers do either. Althoguh i may be wrong, maybe suebear will come buy and answer.
Posted 7/31/2009 1:53 AM (GMT 0)

No, you can have formed stools with a jpouch, their just not as big in diameter.  Most of the time my stool is formed; it all depends upon your diet.  I eat a diet high in fiber, lots of fresh fruit, which helps to add bulk.

Sue

Posted 7/31/2009 4:10 AM (GMT 0)
oops i told a lie! sorry!
Posted 7/31/2009 9:21 AM (GMT 0)
It's so reassuring to hear that the surgery can go extremely well. I am truly happy for you. I am 31 years old, have had UC for the past 10 years and have been taking 6MP for the last 4 years. I have been on Asacol, Colazal in the past with no help- only bad migraines. I now take the 6MP with Lialda, Cortenemas and even started the suppositories. I am currently 1 week into a flare and refuse to be hospitalized again because I have 2 little girls at home. My doctor put me back on Prednisone today which put me in tears. He was also talking about the other biologic drugs- similar to Remicaide. I have taken Remicaide but reacted to it the 2nd time around. He is discussing Humira. You mentioned that you felt like crap on it, can you elaborate? I'm so sick of being sick that I keep bringing up surgery but the doctors tell me that I'm not a candidate. I have moderate colitis that is left sided. They just upped my 6MP dose and started me on the poisionous steroids again. I am so afraid of developing colon cancer if my colitis gets worse. What did they say the percentage is of not being able to reverse the stoma so you can lose the colostomy bag. Self image is kind of a bigger thing when you're a female so that also scares me.
Posted 7/31/2009 1:13 PM (GMT 0)
Nutz,

Your GI is NOT the one to determine if you are a candidate for surgery, the surgeon is. If I were in your shoes I would get a surgical consultation with a great CR surgeon (you can find one in your area by asking at www.j-pouch.org). Many GIs are opposed to surgery and I don't think counsel their patients adequately and lead the patients to believe it's not their choice. It is YOUR choice!! If you have a consultation you can get a better idea of the surgery choices and recovery and if you have to make that decision you will do so with a level head.

Sue
Posted 7/31/2009 3:37 PM (GMT 0)
Nutz-i know the idea of a bag is scary, but dont let the possiblty that you may end up with one deter you from surgery. I have one, i am 32 (eeek!) and a girl, and noone knows and it hasnt affected the way i dress or anything like that. It did take me a few times to get used to lookign at it, but now i dont even think about it.
Posted 7/31/2009 7:42 PM (GMT 0)

Nutz said...
It's so reassuring to hear that the surgery can go extremely well. I am truly happy for you. I am 31 years old, have had UC for the past 10 years and have been taking 6MP for the last 4 years. I have been on Asacol, Colazal in the past with no help- only bad migraines. I now take the 6MP with Lialda, Cortenemas and even started the suppositories. I am currently 1 week into a flare and refuse to be hospitalized again because I have 2 little girls at home. My doctor put me back on Prednisone today which put me in tears. He was also talking about the other biologic drugs- similar to Remicaide. I have taken Remicaide but reacted to it the 2nd time around. He is discussing Humira. You mentioned that you felt like crap on it, can you elaborate? I'm so sick of being sick that I keep bringing up surgery but the doctors tell me that I'm not a candidate. I have moderate colitis that is left sided. They just upped my 6MP dose and started me on the poisionous steroids again. I am so afraid of developing colon cancer if my colitis gets worse. What did they say the percentage is of not being able to reverse the stoma so you can lose the colostomy bag. Self image is kind of a bigger thing when you're a female so that also scares me.

I read there is about a 10% fail rate for the J-pouch, but that's a 90% success rate! I mentioned the 10% to my surgeon and she agreed that it sounded about right. If I remember correctly she mentioned something about 7%, so maybe even a bit lower than 10%. I'm not sure if it was the Humira but while I was taking it at a weekly dose I constantly had a lack of sleep type feeling, yawning a lot, and feeling like drinking a lot of coffee... This could of been from my prednisone use as well. I started taking prednisone on my own, and have been a bit rushed up my dosage drops in the past.
Posted 7/31/2009 7:49 PM (GMT 0)
So far things are going pretty decently. I seem to be down about 20lbs since my surgery, if the gym scale is correct. This is probably mostly muscle loss and the missing colon. I have a good bit of muscle so I'm thinking my body is feeding heavily on it to help repair? I went to the gym and lifted very lightly today and did elliptical for only like 5 minutes, first post surgery workout 10 days after surgery...
My stoma seems to fit almost perfectly into the wafer holes for my bag, with only a very small sliver of skin being exposed. It was started to itch a bit last night so I changed the bag and applied a bit of sin barrier cream, all feels well so far. While I was in the hospital I've felt some anal area itching and burning, seems to happen mostly when I flex the muscles in that area to push out the remaining mucous from the created J pouch. The less I use those rectal area muscles, the more the pain subsides. In a couple hours I'm going to my doctor for an appointment and will see what he says about it. I still feel a bit stiff but I have barely any pain and none if I'm just staying still. So far today I haven't taken any pain meds. Probably by the time I left the hospital I didn't even really need pain meds, never was too bad for me.
Posted 7/31/2009 7:58 PM (GMT 0)
Glad that you're doing well, and I wish you lots of luck with your recovery!

I'm giggling a lot about that "sin barrier cream" though! :)
Posted 7/31/2009 10:42 PM (GMT 0)
Hi Sue,
Thanks so much for the post. I actually have an appointment on Wednesday to discuss my options. I am feeling a tiny bit better today but it is day 2 on my prednisone, increased dose of 6mp, steroid enemas BID, etc. However, my morning was extremely awful. I noticed that mornings are much worse for me and the doctors never have a good explanation. Any thoughts on that? I have another question regarding my Prednisone. In the past, I was always tapered off of my dose. My current GI prescribed 30mg for 10 days without a tapering down schedule. My pharmacist called to ask if there was a taper and he said no. Not sure what to expect when I stop though...

Nutz
Posted 8/4/2009 11:18 AM (GMT 0)
This is very encouraging.  I'm in huge fear for my upcoming surgery as the jpouch forum has all kinds of horror stories of failures and problems (there are some good, too but not many).  My biggest fear is not being able to resume normal activities of exercise, golf, motorcycle riding, etc but since you were in the gym shortly after surgery 1, my fears seems false.  true?  I'm also in good shape - workout regularly, very active, but have many bowel movements in the morning - then good all day - but still dont feel very well since my entire colon is inflamed. Plus, I'm developing dysplasia so colon must come out.  That's the real scary part. 
Posted 8/4/2009 1:15 PM (GMT 0)
Test Flyer,

Most jpouchers are positive about surgery and the results. You just don't see many of them on the internet because they are out living life and don't visit anymore. The ones that continue to visit are the ones have problems.

Sue
Posted 8/4/2009 3:33 PM (GMT 0)
sue bear is right alot of them arent on the boards, cause they dont need any help, just liek alot of people with ostomies arent on for the same reason. I hang out so that i can help people who have questions or doubts, because the people here helped me so much, i wanna be able to help other people

Anyway i opted for the perm ileo, and i had surgery in april 2007, middle of june 2007 i was swimming alot, went on vacation to the beach playing ball, just all kinds of stuff, in july i started going walking and ended up walking about 2 miles a day, then in august was in the gym walking 3 miles or riding up to 7 on the bike, and lifting weights. I wasnt in good shape to begin with and im still not, but thats just cause im lazy about that stuff, lol.
It has nothing to do with the bag keeping me from doing those things. There is a girl over on the ostomy board training for a 5k, there was a girl over there who did a trialthon and rode her bike like 10 or 15 miles a day.
There isnt anything (other than use the bathroom the regular way, lol) that you cant do with a bag. I promise!
Posted 8/4/2009 11:58 PM (GMT 0)
What exactly does j-pouch failure mean? Death?
Posted 8/5/2009 3:38 AM (GMT 0)
oh lord no!

i guess, in a really rare situation it could.  Just like in a rare situation a paper cut could kill you.
It just means you have to go to a perm ileo if they cant fix it.
Suebear can probably tell you more about it.

Posted 8/5/2009 4:10 PM (GMT 0)
I am so sick of being sick.  I have had UC for 5 yrs. without any remission.  I have tried every presciption drug so far (except for Humira) that I've read about so far on the posts except for over the counter meds.  I've been to 3 different specialists in the ARK, TN areas.  I have given up on docs around here.  I have made an appointment at the Mayo Clinic in Jacksonville, FL.  I'm going to beg for surgery.  I'm not afraid just ready to end this misery.  I have no quality of life at this time.  sad
Posted 8/6/2009 1:50 AM (GMT 0)
Arkmom3-i know its hard now, ive been there, but just think after surgery you will be all better and life will be great!
Good luck with your appt.
Posted 8/6/2009 2:01 AM (GMT 0)
I'm getting to the end too. In one year I've tried Asacaol, Imuran, Remicade, Lialda, Rowasa, and Methotrexate.

I'm currently on methotrexate which after 9 weeks has not put me in remission. I think the doctor want to try Humira next, and in all honesty I'm just getting tired of trying things that don't work. However, I have only had UC for a year and I'm only 27, so maybe there will be something down the line that would help avoid the irreversible process of getting my colon removed...I'm giving methotrexate a few more weeks to try to kick in and I guess we'll see where to go from there. But I am definately close to surgery.

Posted 8/6/2009 4:16 AM (GMT 0)
Thanks for the support.  I'm generally a positive person.  However, this illness has gotten me down.  I'm 43 and feel much older.  If I had know five years ago, I would not be any better, I would not have taken all the toxic meds.  I have concerns about the new GI doc not recommending surgery.  If so, how do you go about bypassing the GI doc and moving forward to a surgeon?  I guess I have been like some of the others and thought I had to agree with the GI docs recommendations.  I have lower UC about 30cm but unable to put into remission. 
Posted 8/6/2009 5:24 AM (GMT 0)
i went to my dr and i literally said, "either you find someone to take this out of me, or i will take it out myself" and i was serious!
But its not the GI's decision, its yours and the surgeons. I had only tried 4 meds in 8 years and when i asked my GI about surgery he got me a consult and discussed the other meds i coudl try and i just said, no im not doing anymore, and he said ok.
Usually the GIs will get you the consult. I dont know about your insurance but you could also just contact a surgeon yourself if your insurance allows.
Posted 8/6/2009 5:47 AM (GMT 0)
Thanks summerstorm!!  Do you mind me asking where you had your surgery?

 

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