Community Forum

I have decided to go for the surgery to remove my colon and get an ileostomy/ jpouch.  I will do the 2 step process and have the external bag for a couple of months.  Does anyone have any advice?  I am ready for this (as anyone can be) and I am just trying to get through the next month and a half.  I have never had to stay overnight at the hospital for my UC but it has really affected my day to day life.

 

PSJ   

 Reply posted for Cash75.

Thanks Cash. 

Looks like I'm going to be admitted next week.  I just had a kidney stone attack Weds out of the blue and I need to pass a 4mm stone hopefully soon.  When it rains it pours!

 Reply posted for psj1026.

One more thing:  They told me it would be two to three months before I could get "reconnected" and lose the bag too, but it's taken a little longer than that - not because I've had any problems - I haven't.  My final surgery for the reconnection will be in January.  So I will have had a pouch for a total of 8 months at that time.  For whatever reason my reconnection was done in two surgeries instead of one also, so that added to the time a little, but I think it lessened the chance of problems with obstructions and such. 

Good luck.

 Reply posted for psj1026.

Hello PSJ.

I had a total colectomy in May after being diagnosed with a very severe form of UC in March.  I only had the disease for a few months and was hospitalized for much of it, so it's not like I had years of living with UC to compare, but the surgery did save my life anyway (because no treatments were working on me).

Anyway . . . I was in so much shock about what was happening that I didn't really get to educate myself on the pouches and what life would be like.  It sounds like you've done that - and that's great. 

Honestly, I think the thing that has helped me deal with my pouch the most is being open with people that I know and trust about it.  People are understanding and good and want to help when things are difficult.  Expect there to be difficult times in adjusting to it, but know that you will get through those times.  And don't be afraid to reach out for support when you are having a difficult time. 

I guess I'd also offer that you feel free to ask companies for samples of different ostomy pouches and products to find what works best for you.  Find a good ostomy nurse who can help you out when you have problems. 

Good luck to you!

 Reply posted for psj1026.

Peter,

So far, I have not done the pouch.  Even after the pathology was done on my colon, they still were not able to definitively say whether I have Crohn's or UC.  Since there is a chance it could be Crohn's, they wanted to keep the tissue of my small bowel segregated from any other potentially affected tissue.  I'm sure if I pushed for it, I could get the pouch done but in all honesty, I'm OK with the ileostomy.  Maybe further down the road at some point I might change my mind but right now, the thought of getting sick again makes it pretty unattractive!

Your surgery will obviously be different than mine since I didn't do the pouch.  But with me, it took about 3 months to get over 95% of the pain and probably 6 months before I was able to be active.  I know that might seem like a long time but for me, when compared to how long I was sick, it was a drop in the bucket.

Regarding the timing, nobody else can really tell you what is right for you.  But what I can tell you is that I wish I had done it a lot sooner!  If you ever get to rethinking the idea and need some reassurance, let me know.  I've got a whole laundry list of things I'm doing now that I couldn't do before!

-Mike

 Reply posted for mtmcdaid.

Mike,

Well hopefully that is good luck for me.   I appreciate your input as it all helps.  I am really looking forward to it because everyday seems to get worse even thought it appears I have been better off than most.  I told my doctor that I didn't want to wait for years like so many others I read about.  It is clearly inevitable at this point anyways for me.

Do you have the j-pouch? If so how long before you felt "normal" or leveled off if you will?

Thanks again,

Peter

 Reply posted for psj1026.

BTW, that's the same day I had my surgery on!

-Mike

 Reply posted for psj1026.

PSJ,

As "postal" said, don't look back just keep looking ahead.  I'm 41 and had a complete colectomy w/ileostomy almost two years ago.  My only regret is that I didn't have it 5 years ago.  I have two young kids and being healthy and active for them more than makes up for any short-term discomfort the surgery caused.

Good Luck,

Mike 

 Reply posted for psj1026.

    Hey PSJ, Hi  The best thing I did was to have my operations.  I was in so much pain for my second operation I begged my gastr. to let me have it.  That was in 91' and i've been mostly symptom free ever since.  I didn't have the same type of op. as you but its surgery non the less.  Don't look back get the op.and get healyht again.  Good luck.  Postal-me.