No I'm not!

Hi - I am very happy with my pouch removal. I too had chronic pouchitis, along with anal pain and spasms. It really really affected my quality of life, and it was time for the pouch to go.

That was October 2013.

Today I am happier than ever, I travel, swim, go out with my friends, etc. Yes, my ostomy took a bit of an adjustment, but it's way more predictable than my pouch ever was. I finally have my life back

Any tips to make it easier? 

Tips to make it easier mentally?

It can be hard in the beginning, especially during the first parts of recovery, to see the light at the end of the tunnel. There were so many times that I wondered if I had made a mistake - but those thoughts came when I had setbacks with my recovery. I had a good friend (who had seen my health deteriorate) keep reminding me of all the pain and discomfort I had suffered. She kept reminding me of all the times I had to call in sick for work. Of the accidents I would have while sleeping. Of all the meds that I tried. Of how I was suffering socially because I was too scared to be somewhere that didn't have a bathroom.

Each time she reminded me of those things (which can be easy to forget when going through recovery!) I realised that I was going through tough times now for a better future.

I did a lot of meditation and positive thinking. I set small goals for myself. I got a LOT of rest and ate a lot of protein (you won't recover if you aren't eating properly) while sticking to a low residue diet for about 8 weeks.

You need to be gentle with yourself. I bet if you read through your old posts you will remember how bad things got and just keep telling yourself that by this time next year, you will be a totally different person.

Things DO get better! Just take it one step at a time.

How long was recovery For you? What kinds of setbacks? Did they take the pouch out! I'm just diverted. I can't go thru another surgery so I'm worried about that too! I'm just hitting a real mental setback today. I know how sick I was but I'm still not feeling great so it's making me very nervous. 

I was in the hospital for about two weeks. I was throwing up daily, and while they tried to put the NG in me, I pulled it out three times (I can't take the gagging!) and eventually they inserted a rectal tube into my stoma to help open it up (that worked great, and I tolerated it much better than the NG). I cried A LOT during some very rough days, so I can completely understand that you are having a mental setback today. I so get it. It's ok to be down in the dumps, so many things are happening at once. Pain, pain meds, not sleeping properly, noise, smells, etc can affect us and then it's hard to get through the day to day recovery needs.

I had my pouch removed at the same time, so was dealing with the laparotomy incision and the butt incision and there were days I just couldn't get comfortable. They had to completely open up my abdo wound on my day of discharge because it was majorly infected. It needed daily cleaning and packing from a home care nurse for four months. It took a long time to heal, way longer than my butt incision did. But, once it closed up, things got much better.

Don't get too hung up on trying to feel better every day. I started having to make weekly progress goals to keep my mind in check. And it was simple things, like walk around my condo every two hours as opposed to every three hours. 

Keep me updated and I will be thinking of you often Hugs

Ally give yourself some time. It is all new and happened very fast for you. And like the other person said all the anesthesia and drugs can really do a whopper on your mentality. Is it possible you can go talk to a psychologist? sometimes talk therapy can help you figure out how to look at things differently.

In the interim.. how about some fresh air? a brainless movie... 

try to chill and let your body heal first.

This loop thing can give your life back. I was diverted very quickly qhen I was very very sick with my jpouch... and I did not want it.. but I tell you what.. two months later I was out doing stuff I could've never thought of doing before. I even ran three half marathon with jpouch inplace but diverted. Give it some time, and see if you can go talk to someone.

good luck

Thank you,

Liz why did you eventually remove your diverted pouch?

Hi AlyKat  - I promise I'm not stalking you around the group!  Thanks for asking questions that I want to learn about too.  

Thanks for your helpful replies PoucherinTO and liz11.  I'm trying to be proactive as an ileostomy might be in my near future as well.

HI Allykat

I think I have had much more freedom since having my ileo - I'm much more able to do things and live an active life. I was toilet bound before and quite limited which was much worse. I think you'll find that you settle into a routine and it will get easier. I hope you find that. 

Thanks for all of your replies.  My surgery was just set for 8/31 and it's just for a permenant end ileostomy.  All of your positive replys have made the decision easier. I told my surgeon that things are so bad I would even take my temporary stoma back.  I had a very difficult time with it.  Dehydration problems kept me in the hospital for 16 days after my first surgery.  

Thanks for asking the questions AllyKat.  I hope you are feeling better.