Feeling nervous

Hi Sada,

Well, those are some very good questions and it looks like you adjusted quite well to the ileo and have made your peace with it...At least for now.

I am a sort of long-term kind of person. I do not look at the immediate pain, problems (surgery) or difficulty, I look at what the surgery can offer me as far as quality of life is concerned.

Having a healthy j pouch (or k pouch) is IMO easier to manage than an ileo (I could be wrong) when everything goes well. The surgery is 1 week out of your life, the post op care, well...we all heal differently but yes, you would have to prepare in advance for your return home...maybe beg, plead and pay someone to come in for a while to watch those kiddies and do the heavy lifting (is there a hubby with a kindly mom or sister who could help you?)

Ideally, a mom and/or mother-in-law would take over the kids for a while to allow you to heal, make some freezer meals and do the shopping. (this was my fantasy...never happened!)

The 1st weeks and/or months may be difficult until your body adjusts to its new plumbing. Some people's bodies get the hang of it within a short time, others take a few months (or longer).

The big question is what do you want from this surgery? What are your long-term concerns? How do you see your life and your body in 2-10yrs? What do you expect from a j pouch? 

On the other hand, you mentioned a rectal stump that still has UC...it could be problematic for a j pouch and deserves a serious conversation with your surgeon. 

As for the scar? No biggie. They use the old one (you may or may not be a candidate for laparoscopic surgery due to the other surgeries...to be discussed as well with the surgeon) if they can. 

So make a list...but not the short term worry list. Make the long term 'this is my life' list. Decide how you want to live your life, how active you are and wish to be, how much time you can take to adapt to your surgery and if you are willing to put up with the possible complications post-op or not.

By the way, you can always go back to an ileo if you are unhappy with the j pouch...or move on to a k pouch.

I know that being a mother is your top concern and that you do not want to miss out on a minute in your children's lives but this may offer you an added measure of freedom to enjoy them (or not?)

Sharon

That's the problem with all of the pouch stuff. 

The uncertainty. 

The only true way to know is to do it.  Or not. 

Everyone has a different experience.  You've been through some already.  You kind of know what to expect  surgery wise.  

After that.  It's all individual.  

If you feel you want and would be better off with the pouch.  Go for it.  If you can live with the ileo.  Stay put.  I had a non functioning pouch for 26 months.  I ended up with an ileo.  An ileo for me is the best as I compare what was going on with me.  As I said.  You can see its all individual.  Everyone has different results.  And can live with that.  So many different variations of pouch success and failure.  And all the in between.  It's mind boggling to see all the variations.  Here.  In this forum.  

I am done with it so it's final for me and I'm OK with it.  I did the right thing but took the long way around.  I see now that having a pouch takes tons of patience and dedication to it.  And I didn't have that.  Mine was worse than the UC I originally started out with.  And had immediate relief getting my end ileo. 

Just a few thoughts to throw into the ring of confusion and uncertainty of it all.  Sorry. 

I wish you the best with your decision. 

It is definitely not an easy one.   But one you have to make yourself.  

Richard. 

Thank you for your replies, I am defenitley going through with the surgery it's decided.  Sharon thanks for your positive feedback, and yes I am so lucky to have lots of family support, both my parents my sister, husband and in laws but it still doesn't take away the stress of mommy not being there when I want to be.  I'll get through it and hope it is all worth it in the end.  I find having the Ostomy is a disability to my physical, sexual, mental and emotional life and If I have the Chance to not have it.. I'm going for it!  I will make a list and hope to follow it best I can 

Thanks again

Sada- I read your post and felt so happy for you.  You sound confident in your decision and that is what matters (along with a skilled surgeon). I commend you as it isn't easy - it is a big change.  But like you state, you find having the ostomy a 'disability to your physical, sexual, mental and emotional life'...I couldn't agree with you more as I felt the exact same way.  All the best in this next 'phase' of dealing with UC.  You have your family supporting you and you also have all of us! Keep us posted! Kara 

Confidence and a positive attitude goes along way.  Because this stuff can really get you down. 

Best wishes. 

Richard. 

Sada,

I had my k pouch done at 18 because I felt that I could not develop as a woman with an ileo (this was in the '70s when there were very few options and 0 communication to the general public about IBD, UC or any other bowel problem...)...I was right. I am rather shy and prudish is many ways...I could have never overcome my natural shyness with an ileo or lived the life that I chose to live...I traveled throughout Europe and the Middle East, settled in France and lived a rather unconventional life...an ileo would have been a serious obstacle for me...

So, personally, I made the right choice, lived with both the positive and negative consequences and regret nothing.

So hug the kiddies, get it over with and move forward.

Good luck and may this give you the freedom, good health and mental & emotional stability that you crave and deserve.

Sharon

Hi Sada, I see your takedown is Tue Sep 27, 2 days to go !!. I am 2 weeks post takedown, and still adjusting. I actually miss my stoma and its routine a bit, as it was really quite easy, and I sort of came to terms with the physical side. Post takedown is a new journey, and I am far from settled, but am hopeful and positive it will bring a new lease on life. Literally, as the Step1+2 was a lifesaver, Step 3 is more of a convenience and image boost, the way I see it. And if you have the option, fantastic! I am wishing everything of the best for you going forward, let us know how it goes. Lotsa love, Capetonian