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Some questions ... it's decision time!

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Posted 11/13/2015 7:15 PM (GMT 0)
Hi guys

I had a total colectomy last year after diagnosed with UC about a week beforehand. Left the rectum. Now deciding between pouch or not. Few questions for you if you're up to it. Also posted this on the j pouch forum but looking to get some ostomy coverage :)

1) is anyone on the board over 6ft 6 or eats over 3,000 calories a day with either a jpouch or ostomy? If so would be helpful to know how that's maintained.
2) does anyone do any endurance sports with a pouch?! Specifically over 4hrs with no toilet stops? Nothing at a high level just cycling long distances etc.
3) is anyone on the board relatively young (will let you judge!) and "chosen" to stick with the stoma bag and had the rectum removed?
4) since last year my immune system has not been as strong ... relatively minor things in comparison ie mild asthma, chest acne, psoriasis. Anyone have similar experience and thoughts on it being related to still having diseased rectum?
5) rectum would probably bleed every day if I didn't take mesalasine. Standard or a bit "angry"?

I've pretty much made up my mind (I think) based on my own situation but would be v helpful to have some comments here on the specific points.

Thanks

Graham
Posted 11/13/2015 10:47 PM (GMT 0)
Here's my 2 cents, for what it's worth...

I don't qualify to answer the 1st or 2nd question, as I am not over 6 ft 6, don't eat quite that much and don't have a J-pouch. Also, I don't do endurance sports, but I am quite physically active with my permanent ileosotomy...cardio, strength training, jogging, hiking, yoga, camping, etc... and have had no limitations or issues with that lifestyle.

When I decided to go ahead with surgery I was 34 years old, and am now 37...so I will go ahead and qualify that as "relatively young"! I honestly never seriously considered going for the Jpouch, instead deciding to go right for the ileostomy. Of course I researched and discussed both options thoroughly, but always felt pretty sure that I wanted to get the ileostomy. Mostly, I wanted to move on and get well as soon as possible. I didn't want 3 surgeries or to have to worry/deal with pouchitis and other issues. I haven't questioned my decision at any point since my surgery.

In my non-professional opinion, I would say that your weakened immune system could be a result of still having a diseased rectum and active UC. I was so sick when it came time for my surgery that my surgeon felt removing my entire anal stump and sewing up my backside would be too much for my body to handle at that time, so that part of the surgery was not done. I had some health issues after the surgery that led me to believe I was having some auto-immune related problems, despite having the colon removed.I have since had a 2nd surgery to remove the anal stump and sew my backside up...and so far, my health has been much better overall.

If you are still having consistent bleeding, there is a good chance you still have active UC in your rectum, or at the very least, diversion colitis. As I said, all I was left with was an anal stump, and I still had bleeding, mucus, urgency, pressure, etc... After my 2nd surgery, my surgeon told me that there was still a lot of inflammation (UC) in the small bit of stump I had left.

I am very happy with my choice to get the ileostomy and don't feel that it negatively impacts my life in any way. Good luck with your decision, and wishes for quick healing, whatever you choose!
Posted 11/14/2015 7:53 PM (GMT 0)
Thanks for the detailed reply, very helpful, especially part about the stump removal. I've looked into both options and swaying more towards sticking with the stoma, purely because it feels like it fits more with my lifestyle and don't fancy the risk. Obviously neither option is great and ostomy option comes with its own set of issues.

I also had emergency surgery, and it must have been one of the shortest times from diagnosis to surgery which I suspect I should be grateful for in some ways :) And agreed - surgeon thinks there is still active UC or diversion UC in there, I would bleed every day if I didn't have enemas and still have the all encompassing body shaking feeling of pressure as mucus/blood passes out every 3 days or so even with the enemas.

How was your recovery post proctectomy? Looks like you had it fairly recently (9mths ago?) so would be interested to hear. Appreciate everyone is going to be different, but how long before you would have fancied sitting on a bike saddle!?

If anyone else has a host of related autoimmune issues with a rectal stump OR if anyone has been able to manage eating a lot of calories or chosen to stick with the bag then would be v interested to hear your story.

Graham
Posted 11/15/2015 12:28 AM (GMT 0)
Well, I'll give it a try too- I have a perm end ileo with my rectum removed & sewn shut.

1- nope, I'm 5'5", weigh abou115, but I eat all the time- far more than I ought to for weighing not that much! I don't seem to put weight on that easily, but I never really did.

2- I hike & bike a lot, & often go 4-6 hours without emptying my pouch. It seems like it fills up overnight, I have a full bag in the AM, then I empty maybe 4x thruout the day, until bedtime. This is reagrdless of what I eat.

3-I had surgery at 44, am now 45- still young! I personally felt only capable of dealing with the one major surgery.

4- Immune system seems fine- I'm in the "auto-immune disorder" IBD camp, so always wonder if it's going to attack some other part of me- so far, all's well.

5- could not handle this symptom, after going thru such a major surgery & still have daily issues to deal with.

I love the ileo- of course, would rather have been able to not get one, but... you think it's going to be such a huge change, such a big deal, then it happens... and it's not! You wake up from surgery, think "That's kind of gross, and kind of cool", then just move on. I was actually shocked that I never did have that freak-out moment... I eat what I want, I go wherever, whenever- I'm active like I never could be with UC, truly have zero restrictions on my daily activities. Good luck, whichever way you choose!

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