20 Years Post Colectomy

Introduction:

My name is Vicki. I am an Arizona resident and was diagnosed with UC in 1990 although I had irritable bowel disease from the time I was in my teens. I am a medically retired RN. I love to be outside and that is why I moved to Arizona six years ago. I hike, bike, garden and have five dogs.

20 Years Post Colitis Diagnosis and Colectomy:

I was diagnosed with ulcerative colitis in 1990 and in 1991 I had my colon removed.( I had no idea of the life long struggle ahead of me.) A J-pouch was constructed out of my small intestine and after three months I no longer had to have the ostomy bag. I was able to go ‘normally’. All this while raising an infant and a two year old and during my first year of college. It took me five years to get a two year degree in nursing but I became an RN and a very good one learning from my experience as a patient. All that was 20 some years ago and I have done everything I would have with a colon but always with the knowledge of where the best public bathrooms are !!

I also keep a roll of bath tissue

in my car for emergencies.

If I was asked how I have coped with going to the bathroom 6-10 times a day for thirty years it would be good reading material and a sense of humor but I would like to sleep eight hours with out going to the bathroom.
Medically the whole experience was a nightmare. I finally found a great Doctor and after the surgery he moved to Boston. Since (30 yrs) then I haven’t found a doctor that I feel really understands and a big problem has been the side effects of drugs. The colon has a purpose. One is It reabsorbs fluids. Medications such as antihistamines pull fluids from the body into the small bowel and those fluids are reabsorbed in the colon. If there is no colon to reabsorb then there is severe diarrhea. It is always good to have a conversation with the pharmacist even before taking OTC meds.
Main problem now is I contacted hepatitis C from the many blood transfusions. This was before blood was screened for hep c.
Even though I no longer have a colon and have been told I am cured I still sometimes feel as if I am physically having a flare up, just without the bleeding colon. I will have mouth sores and fatigue similar to when I had UC and I would like to know if anyone else has these symptoms.

Colitis Medications:

I did not have very good results with the medication. I wish I had known about the relationship between quitting smoking and colitis. I just wonder if a couple cigarettes a day or a nicotine patch would have helped calm the colitis. Not that I would ever encourage smoking but I did become a hundred times sicker after giving up the butts.

written by Vicki




hepatitis

12 Responses to 20 Years Post Colectomy

  1. uma February 21, 2012 at 7:01 pm #

    This is an eye opener as many UCers think that with surgery things will be normal as before. Please think twice or may be several times over before taking the final step as you will not get the colon back.I am thankful to vicki for this feed back.Surgery technique’s might have improved since 1990,but living without a colon is hard as it has vital functions to perform.This is my opinion. Doctors always push for a surgery saying that you will be cured so think well all UCers.

    • vicki February 23, 2012 at 11:36 am #

      Uma,
      I totally agree. There is no cure but ‘way back when’ people died. Now there is a choice a permanent ostomy or an internal pouch. The colon removes much of he fluid from the stool without it the stool is very watery and sometimes I sit on the throne for 30 minutes or more then have to return a few minutes later. I miss my colon.
      Vicki

  2. Gary February 22, 2012 at 11:12 am #

    Hi Vicki. Did you mean you were diagnosed in 1980 instead of 1990 because a colon removal in 1991 was 21 years ago not 30. Just curious because surgery techniques get better every year and 30 years vs 20 years ago might make a difference in the outcome. Sorry to hear you are going to the bathroom so often. I thought surgery brought one back to pre UC days. Surgery is always in the back of my mind especially when I am having a bad UC day.

    Gary

    • vicki February 23, 2012 at 11:27 am #

      Hi Gary, I am embarrassed about my math skills and you are absolutely right it has been 20 not 30 years. Unless the surgery results have changed and I don’t believe they have life with a j pouch still requires having a bathroom close. I believe the right diet helps and after reading all these stories it reinforces that belief. When I was working I never ate after 6pm to limit the times I had to get up at night and actually I just wouldn’t eat much on work days. Surgery saved my life but I wouldn’t recommend it unless it was necessary.
      Vicki

  3. sc February 23, 2012 at 12:31 pm #

    Hi Vicky,
    i’m sorry you are going through all of these problems so long after your colectomy. I’m sure you’ve tried it all – immodium, fiber, pepto, etc? From what I understand there are many ways to reduce your BMs but I guess after 30 years you’ve tried it all. Have you posted on jpouch.org – there are many people with “problem pouches” there sharing ideas and tips and many have gotten help and moved on. Just an idea? I’m assuming you would not go to a permanent ileo? I guess that’s a very personal choice as well.
    Uma, I appreciate your perspective but to be totally frank I find it annoying and unhelpful. I am glad you have found something that works for you but so have many people who have had surgery and that thing is surgery. There are many stories on this site of people getting their lives back because of surgery. I’m not “pro” or “anti” but advising people suffering to “think well” before going for such a major procedure assumes that they are just jumping into it thoughtlessly. In my experience, we might as well have bought stocks in slippery elm, ulcerin compound, boswellia, curcumin etc etc etc as we have tried it all and much more. So, try to be a little less condescending. And also educate yourself to the fact that the jpouch surgery as over a 90% success rate. Most with they had done it sooner. No one in a decent remission is going to go out an rip our bowel out. And lastly, most GIs are totally anti surgery. You have to be on your death bed, so I don’t know maybe it’s different where you are, but really inaccurate. End of rant.

  4. vicki February 24, 2012 at 10:14 am #

    SC, Thanks for the info about jpouch.org. It has been years since I have done any research and I have only talked with one other recipient of a jpouch and she was so depressed I couldn’t help her. so this sharing of information has been a real blessing for me. As you mention surgery isn’t really choice, at least the colectomy. It is that or eventually death. It has been nice to read the stories of people who have survived, struggled and are leading happy successful lives.

  5. Shelly in Maine February 25, 2012 at 5:56 am #

    Wow…I think rants are okay as long as they are not directed. I think it is important to be careful, kind and supportive of fellow UC’ers. We are all in this together. Adam has created a safe place to vent and share and we should be responsible with our voices. There are no guarantees…90%??? I think one’s definition of “SUCCESS” changes upon HAVING to undergo surgery. I read the survey, stories, research, etc. and I am NOT convinced it is a “cure” or “successful”…but it is relative redefining as to one’s co-existence with UC. I will say because of stories like Curtis’ and Blake’s and even Vicki’s, I, as a lifer with UC-I’m 43, diagnosed at 15, but symptoms as far back as I can remember, am now NOT afraid of surgery. For the first time, at my Thurs. appt. with my GI(who I’ve been with from the start)we discussed it as a possibility…HOPEFULLY NEVER, but I wanted to be sure to have a plan since I am all out of meds…allergic and intolerant to all-and because I live in Maine, my options are limited and I didn’t want to end up in the ER with some hack…I’m pretty sure it is not 90% “success” in Maine. So there is my rant. Let’s be kind and supportive and thankful for the gift of this forum from Adam and fellow UC’ers!
    Good Health All, Shelly

    • Shanna March 3, 2012 at 9:19 pm #

      I have had my j-pouch for 3 years and it IS the best decision I ever made. However, I did not make it lightly. I did my homework and found an awesome surgeon who specializes in laprascopic j-pouch surgery. I fall into the 90% who wishes I had done it sooner and would do it all over again in an instant. I only have 4-5 BMs per day and none at night (although after 2 kids I still pee at night). I do take Immodium and Pepto to slow things down and make sure I have plenty of fiber (Benefiber). My favorite part is I can “hold” it now….sometimes up for 2 hours. With UC, you all know that when you have to go, the bathroom better be close! And I can eat anything…fruits, salad, nuts!

  6. Jodi April 16, 2012 at 2:20 pm #

    Hi Shanna. If you see this message, could you please email me to my personal email address jodialoss@gmail.com ? I am considering the surgery but I have questions and would love to forward some to you (if I may). Thanks so much.

    Jodi

  7. Wendy
    Wendy June 3, 2012 at 2:08 pm #

    Thanks for posting. I am seriously considering surgery, but still trying other things that are natural. My UC seems to have improved since I made my appointment at Mayo Clinic for the 24th of June. It seems like my body is saying, “OK, OK, I’ll smarten up.” Previous to my recent improvement in UC I was ill since October 2011 to where I could barely eat a thing. Great for weight loss though! Always wanted to lose those few extra pounds and I did it! Of course, it wasn’t healthy. I am glad you posted problems because I want to know about them. I would be very very upset if I never heard about this before I removed my colon. Even if my problems are worse if/when I remove my colon, at least having been fully informed would help me to know that I knew what I was getting into. Thanks.

  8. Gordon September 23, 2013 at 3:29 pm #

    hello I am A colitis survivor I live with a j pouch which is much better than living with the diseased colon I’m 55 years old and i had my surgery in 2002. I lived with UC since 1979 diagnosed in 1990. went through multiple Regiments of medications from 1990 to 2002 nothing worked but surgery. I still live with a lot of symptoms just not as painful. I’m very active in my life style and I still know where every restroom is when I go some where. I’m too lazy to keep a strict diet and I pretty much eat anything I want. So I think a better diet then what I eat in lots of sleep is my best remedies good luck to everybody.

  9. Peggy March 17, 2015 at 3:42 pm #

    I am 62 and had my colectomy and j pouch in 1993. I have had a successful life as a nurse and educator but the work of managing my bowel life has taken its toll. I continue to have 12-15 bms a day It would be nice to sleep more than 2-3 hours in a row and issues with adhesions and scaring have been rough and required more surgical interventions. I do feel blessed not to have the constant pain and bleeding. I deal with chronic dehydration and fatigue but we all keep our public face cheerful so no one really knows how we feel. If you can avoid the removal of your colon do try.. there are more alternative treatments out there.

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.

iHaveUC.com is located in Menlo Park, California - United States 94025