Community Forum

Hello,

I am 52 years old and have had UC since 2001.  I have endured some pretty rough flare periods.  However, I have had no symptoms for the past year and a half so was very surprized when my recent colonoscopy showed a damaged colon and 6 new polyps, 3 being pre-cancerous.  Also, both my parents and 2 of my grandparents have had colon cancer.  So, my gastro doc. is recommending I remove my colon.  I meet with a surgeon in a couple of weeks.  In reading about options on-line, I am attracted to the BCIR option.  It seems better to me than the j-pouch  surgery.  With the BCIR, you drain an internal pouch 3-5 times per day.  The stats show that 86% of the 500 patients surveyed who had this surgery felt "very satisfied" or "satisfied".  With the j-pouch surgery it says you have 5-10 bowel movements per day and many people have urgency.  To me, urgency and frequency sounds like having colitis!  Does anyone know if the BCIR is as good or preferable to the  2 step surgery with a j-pouch?  Im a little suspicious as there is only one doctor and one place in the US offering it.  Is it as good as it sounds?

I welcome any advice or insights.  Thank you,

Marcia

 Reply posted for hillslife.

Hi Dolores;

My experiece says you will be doing yourself an injustice by opting for a permanent ostomy without trying a jpouch first.  I know you are tired of dealing with the urgency and frequency of UC.  I felt the same way. 

It is my understanding that if you opt for a permanent ostomy, you cannot change your mind and try a jpouch. 

I spent only two days with incontinence and had only two episodes of it.  Both episodes occured while I was asleep. 

After those two days, I did go to the bathroom frequently as I was in the process of figuring out my newly remodeled GI system and I did not yet entirely trust myself.  I NEVER experienced URGENCY.

I don't know exactly how many times per day I use the restroom, but I do know it is less than 20 and probably less than 10.

I do not experience any incontinence - ever.  However, I have never given birth.  I understand women who have delivered vaginally are more likely to experience some anal leakage. 

My takedown was in July 2009.  By early September I noticed a decline in the number of times I was in the bathroom, and I had full trust in my jpouch.  By November I was using the bathroom even less.

I had a lot of problems with my ileostomy.  I was unable to keep myself hydrated and had to regularly visit the ER for hydration.  It seemed I was in the bathroom all the time emptying my bag!  Everything moved thru me like a shot!  I could drink a cup of water and within minutes it would be in my bag and I would have to empty it. 

With my ostomy I also could not take pills.  Well, I could take pills but they just ended up in my bag.  I took Immodium to try and slow digestion, but to no avail. 

Also, with the ostomy, I couldn't eat what I wanted.  I did not like having a restriced diet. 

PS  feel free to contact me at angie.woodstock@gmail.com

 Reply posted for Ang300.

Hi Angie - appreciated hearing about your experience with the J Pouch.  I am exploring my options for surgery now and the one thing that worries me is after the 'take down' from the temp colostomy - I don't want to have to go back to running to the bathroom 10-20 times a day and totally disrupting my life again while my body adjusts to the pouch.

I am even thinking having a colostomy for the rest of my life would be a freeing experience and then at least I could do the things I love and miss again without the fear, urgency and embarassment.

Sounds like you had a pretty easy time with the reversal - but some posts say up to a year you have liquid, incontrollable stools....that is what I am living now with UC and I am not sure what to do.  I just want this nightmare to end...

Thanks for your input - I am obviously still in a quandry as to whar procedure to attempt.  I am 56; just retired from my nursing job due to this illness and have had UC (and possibly some Crohn's mixed in) for about 11 years.

Dolores

 Reply posted for Marcia.

Hi Marcia - I am exploring the BCIR option also.  There is a doctor in California that does the procedure also.   I contacted them this week and they called me back and answered many questions I had.  There is also a 'patient handbook' on their website that answers many questions and gives good explanations.

I have forwarded this info to my GI doctor and asked her advise.  So just waiting for the reply.  This procedure is not as common as the J Pouch, but seems like heaven to me to not have the 'frequent and uncontrollable urge' to us the bathroom right NOW...

There are a couple websites you can look that may give you more information.   I am not endorsing these sites; have not used these centers, nor can I give you any recommendation  - just good information to consider.  Good luck!

http://www.bcir.com/howItWorks.php

http://ileostomy-surgery.com/Ileostomy_and_BCIR_Frequently_Asked_Questions.html

 Reply posted for Marcia.

Marcia:

Here's the rest of my observations:

- I drink Metamucil (sp?) twice a day; once when I get up and once before bed.  I also carry Imodium with me, though I haven't had taken them in awhile (come to think of it, I better check some expiration dates!)

- As for having to get up at night, that depends upon the amount of time between when I eat dinner and when I go to bed (the closer those two are together, the more likely I'll have to get up once during the night; the farther apart, I sleep through the nite (unless I have to pee!))

- I've experienced no restrictions in activities; I run, swim, ski, travel (including abroad), etc.  As I alluded above, you just have to plan ahead (a habit I guess I got into from my UC days)

- About the only thing I haven't done is backcountry camping where no facilities are available (I do go camping, but I prefer a campground with running water, though a Don's John certainly does the trick)

That's about it for now.  If I think of anything else I'll send an update.  Best of luck and please let me know if you have any questions.

Kind Regards, Steve

 Reply posted for Marcia.

Marcia:

I just wanted to confirm many of the things that Angie said in her post about the J-pouch option.  I had my procedure done 20 years ago and have been truly blessed with its success ever since (a tribute to the gifted and talented surgeons that did the work!).  Building on some of Angies points:

- I would guess that I average about 6 trips to the bathroom each day (I'm in there to pee more often than that!).  The low is probably four times a day (e.g. when I'm on a real regular schedule of eating similar things at similar times of day) while the high is probably ten (e.g. when my schedule is hectic or if I get sick with a stomach flu (I have kids!) and things are 'going through me' quickly . . . Imodium tends to clamp that down) 

- The sensation of 'having to go' is very much like 'having to pee.'  In other words, it's a sense of 'fullness' (if that makes sense) and NOT at a sense of urgency like when I had UC.  Those days have blessedly been gone for 20 years

- Certain foods definitely affect how often you go.  For me, it's fast food (e.g. hot & greasy) and mixed nuts.  Also, please understand that it's not that I no longer eat those things (e.g. I have no dietary restrictions), I just make plans when I'm going to eat those things

- I find that gas often causes me to have to go rather than food.  In other words, be aware of what foods generates gas in your digestive track (beans & spinach for) and aware that the gas adds to that sense of 'fullness'

FYI, I'll add more in another post as I'm exceeding the word limit

Steve

 Reply posted for Ang300.

Angie,

Thanks so much for sharing your good experience with the J pouch.  It was helpful hearing some of the specifics too... how certain foods can require a little more care.  Knowing that things can go well and that you can feel normal gives me the extra boost I need to go to the appt. I have with the surgeon in 2 weeks to learn more about the j pouch surgery.

Blessings!

Marcia

 Reply posted for Marcia.

PS  Since my jpouch surgery, I have never experienced any sense of urgency to use the bathroom.  It just feels like normal - the sensation is the same as before I was diagnosed with UC.

 Reply posted for Marcia.

Hi Marcia!  All I have to offer is my own personal story - maybe you can glean something from it.  I have never heard of the BCIR surgery so I cannot comment on it.

However, I do have experience with the jpouch surgery.  This summer I had my colon removed because I had severe, universal colitis that wasn't controlled and I do not respond to Prednisone and other steroids.

I absolutely love life again now that I've had the surgery.  I don't know how many times per day I use the restroom; not enough times to bother me that's for sure.

With the jpouch, I can eat anything I want.  Thus far, I know that certain foods cause a looser stool (i.e. chocolate and caffeine).  So, when I eat those I take extra Loperamide.

Currently I take two Loperamide per day to help firm up stool, and I will take more if I consume chocolate or caffeine.

Since you are not having any UC symptoms, I'm sure after surgery you will feel like you are in the bathroom a lot.  It's all relative.

My surgeon gave me some data that said people with UC who have this surgery have an improved quality of life becasue their restroom visits are reduced (and these people are not in pain and bleeding all the time).  But people with cancer (or other issues) have a decreased quality of life because the number of BMs increases for these people.

If your UC is under control, you may not percieve jpouch surgery as a life improvement.  I wish I had better news for you.  Personally, I love my life post-surgery.

I hope this gives you some insight.

Sincerely,

Angie