NCOT: For What It's Worth.............

Wow, that's the second time today I heard that someone hates their J pouch. I had a follow up appt with my surgeon and bless her heart, she was running an hour late. The gentleman sitting beside me and I struck up a conversation and he asked me if I had met my surgeon before or was I there for a consult. So we ended up chatting for the hour wait. He has had his J pouch for three years. It was done by a doctor in the US (he didn't say where) and has had nothing but issues since day one so he was there to meet with my amazing surgeon to discuss a permanent ileo. I told him all about my experience with her (she's amazing!!!!) and how pleased I was with my ostomy and the care I recieved from her and her team.

We went our separate ways but did exchange email addresses. I also pointed him to this website (hi Al if you see this!!!)

You are so right about the devil you know.....I guess until one has tried everything, they don't know what they will like. Just difficult to do that when it means multiple surgeries.

I am thinking of you guys, NCOT and Silent Lucidity. While this certainly wasn't the outcome I anticipated 20 years ago when I was diagnosed, I am much happier now than I was three years ago.

K

I lived with a loop ileo for two years after my emergency surgery. It was a little more.....uncooperative.....but not unbearable. This new end ileo rocks. It is perfectly round, small and works amazingly well. I have found it really strange to not have to eat marshmallows before changing this ileo. With my loop it was forever outputting stuff! This one is much more cooperative.

I think everyone is entitled to their own choice of what is going to make life easiest for you. If that means an end ileo, go for it. If it means keeping your Jpouch and working thru the "early days" then that's what you do.

BTW, had an email from my new friend Al just now. He's booked for an end ileo the end of March. He's counting down the days until then!

I am so sorry SL. I don't know what life with a jpouch is like so I am no help at all. I don't know the difference in having a two step or three (other than the obvious......another surgery). Is it the amount of times you are having to go to the washroom? Pain? Butt burn that I hear about?

I will add you to my thoughts and prayers. I am still struggling to heal my butt wound.....although my surgeon was pleasantly surprised how well I was doing! She thought it would take much longer for me to get where I am now. Everyone has something on their plates don't we!

Hugs!

Silent Lucidity said...
I think part of my problem is that I know how easy an end ileostomy is to live with. Most of the people that post saying they are happy with the j-pouch had a two step process. Hence, they only ever knew what a loop ileostomy was like. I have come to the conclusion that had they experienced an end ileo, a fair percentage (I'm not saying all) would agree that the j-pouch is second rate at best. I have not eaten properly since surgery two months ago and have never been so hungry in all my life. Eating is NOT a problem with an end ileo.
I will probably get the "early days" blah blah replies to this, but when I see my surgeon next I'm asking for a new ileo, end of.

I had an end ileo and I still prefer my j-pouch. I'm sorry you're having a rough time, I hope it improves soon.

I don't understand it either Eva to be honest. Perhaps my lack of understanding comes with knowing I was never a candidate for the pouch. Since my entire adult life was consumed with being "sick" with crohns, the last two years with my loop and now my end ileo have literally been the best two years of my life. I feel human, no pain, back to real life. We are going to Cuba for two weeks in March and I plan on wearing my bikinis. This ileo saved my life. Without it I wouldn't be on vacation with my family.

I hope SL finds some relief and that NCOT figures out what is causing her such grief. Living in pain is no life at all.

Sue, I guess I'm an exception to the rule then. Either that, or some people would rather cling to what they consider more "normal", than admit they were better off pre pouch.
I'm pretty sure that as our NHS decays further here in the UK, the funds won't allow for j-pouch surgery, and end ileostomy will be the only surgical option. Makes me wish I'd waited longer.

That sucks, dude - I nearly had a breakdown after agonising about surgery for a year :-/

I hope either the j-pouch function improves or you can revert back to an end ileo. To be honest, I'm pretty much entirely used to the stoma now. I don't love it, but I don't wince at the sight of it anymore, like I once did. It's the rest of my bowel which bothers me. Some days are worse than others, but I can't stand the gas, cramping, and discomfort - on a bad day it can send me into a total anxiety attack.

Thing is, I remember having none of this in my early days with Crohn's. I was hoping surgery would send me back to that state, but instead it feels like I've gone back to the mid 2000s, when my symptoms were getting worse all round - the only thing I'm lacking are fevers.

Sorry, gone on about myself again... :-/

Silent Lucidity said...
nobody loves their stoma, anyone that says that is flat out lying..

Statements like this really piss some people off. The people that actually do love their stomas. Not everyone struggles with it. Did I love mine? No, but that was me. I have met people that really do love their new life without UC and with their permanent stoma. So don't make stupid blanket statements like that.

I think I love my stoma, but maybe that's because I don't remember what it was like living with a healthy colon.
I love my life now and can't believe how lucky I am. My only regret is that I waited so long....but I just wasn't ready emotionally.

I've noticed at the support group that I go to, that people there who've adjusted easiest, are those who suffered with UC for a long time. Cancer patients who suddenly had to give up their colon, seem to have an understandably more difficult time.

My life is so much better...physically and emotionally. I am so grateful for my stoma. Definitely not flat out lying. 😉

suebear said...
Silent Lucidity,

You have made two statements in this thread that are inclusive of others when in fact they are your personal experience and opinion. First you said,

"had they experienced an end ileo, a fair percentage (I'm not saying all) would agree that the j-pouch is second rate at best."

That's your opinion yet you tend to include other jpouchers without any evidence to back it up.

Now you are saying that,

" nobody loves their stoma, anyone that says that is flat out lying."

That is also blatantly untrue and offensive. If you don't like or didn't like your stoma that's how you should present it, but to say that everyone doesn't like theirs and is lying is wrong.

Sue

Sue,

I wish this forum had a like-button or a +1 feature because I would have given you one for that post. I agree 100% with your post.

NiceCupOfTea said...


I've had Crohn's since 2000 and will never forget what it was like to have a normal colon and digestive system. It was better. Sorry if that offends anyone, but it was objectively better in every way compared to the setup I have now.

Change it to UC and 1984 and that is my opinion also. And I am satisfied with my ileo. For me It is a question of functionality. I functioned well with my colon for 32 years and I functioned pretty decently with UC for 25 years, then I got cancer. My J pouch was failure and it functioned badly, my end ileo functions well, and it was a relief after the failed J. But as good as a decently functioning colon? Not hardly. That said the ileo works for me and doesnt restrict my activities. I do not have an ileostomy centered life, I did with the J pouch.

NCOT, thankfully one person here "gets" me! I'm not going to get into a war of words with anyone else, if it's over their head so be it. This board has developed an attitude I don't care for lately, so I'll make this my last post and bow out. Sue, if you are able to deactivate my account, please do so.