Please tell me a stoma is not as painful as this... :-/

There is NO pain with a stoma. You don't feel anything on the way out.

Once you find a system that works, you won't even know you have it. Honestly, there is no pain and lots of people have no trouble with leaks.

I am sorry you are suffering so much. I remember that pain.

My wife is 2.5 weeks out of her surgery, and there is no pain associated with the stoma at all, just some post op pain, as can be expected.

NiceCupOfTea said...
Thank you, folks - that's a good start, keep it up >_>.

But seriously, even if you go a squillion times a day, there's still no soreness there? I can cope with emptying the bag a lot, just so long as it's painless.

My wife struggled with the decision to get the ostomy for about a year. She's glad she finally had it. The alternative was unbearable.

I have no regrets at all. I am going for the jpouch but only because I have had some issues with my sensitive skin and the flanges.

It's kind of awesome with the stoma. You can eat pretty much anything and NOTHING hurts on the way out. I've taken advantage of this by eating some really spicy food. No ring of fire with a stoma!

I also struggled with the decision, but I was out of options so I had no choice. My only regret was that I didn't do it sooner, before I struggled with all the drugs.

Ummmm....this is a no brainer. I felt the same way you do before my surgery, with the same pred dependency. I opted for the end ileo and had my rectum sewn shut. I have not regretted it for ONE DAY since the day of the surgery. I felt better when I woke from surgery than I did before I went in. I tried every drug imaginable before the surgery and now wonder what they all did to me.

I have no Crohn's symptoms, I'm off meds, I've gone from 92 lbs to 140 (5'6), and my hair is 3x as thick. I have no crohns related pain. I can eat so many more things and I don't catch colds ever (I used to get everything going around). It is such a night-and-day difference, it feels like 2 different lives. Message me if you want to know more.

Hope you are better soon, whichever route you choose!

Hubby is 2 yrs and 2 months with his permanent ileostomy and after he healed from his incisional discomfort he has had no pain and no complications. No problems with his stoma. He honestly wished he had the surgery a few years sooner. It is a lifestyle change for sure and there is a learning curve and some trial and error but manageable. No more meds, no more pain, no more living on that toilet waiting for rabbit turds to pass with excrutiating pain and blood, staying home instead of going out as it was just too much of a hassle most times. When we did go out so many times turning around and coming back home for the bathroom or rushing to a bathroom when driving.

Hopefully the way things have been since the surgery and healing, it will continue for a long time with no complications or problems. BUT...whatever may be down the road we are making up for lost time and having a heck of a time enjoying life and very grateful to have all that behind us now.

Do as much research as you can to be as prepared as you can be. Be sure to get a good surgeon with a good track record and have your stoma placement decided before the surgery and in all likelihood the surgeon can place it there.

There is a ton of info here in so many different threads....take notes...I did....it really does help immensely.

Hubby had hoped for a shot at the j-pouch....not meant to be. At first it was a bit of a disappointment but honestly looking back he is and was fine with it and it has worked out very well. We are a lot older probably than most on the board here so I know there are other considerations we don't have to deal with. However...something that is a literal "life saver" definitely puts a different spin on the whole picture too.

Good Luck!

No pain, EVER! I remember the debilitating pain of my crowns and this is so much better!!!!!

You don't have to grind it down. My surgeon told me unless I ate a head of cabbage I would be ok,lol. Food blockages are usually resolved pretty easily. I've had one, with fried cheese sticks. I got in the hot tub, it came out. It was painful for a while. Now I've learned to eat something else with those, and drink more. I used to eat popcorn everyday, along with a piece of bread and never had a problem. I don't now because of my teeth.
I have had one serious blockage, last year about this time. (I'm not saying this to scare you just so you will befully informed). It was a result of adhesions. I woke up one morning with horrible pain, I went to the er, found out my intenstines were twisted! So two days later I had to have surgery to have them removed. Now, I had an open surgery so that increased my risks. And even though the adhesion surgery wasn't fun. It was nowhere near as bad as the original. I went in healthy and with a stong core. I was able to sit up and walk straight right away. What I'm getting at with my really long story is that I wouldn't have traded the 5 healthy years for not having a blockage. And after a few weeks I was good from the blockage. Something very important for you to do if possible is get your core as strong as possible before surgery! It will really help your recovery.

Cheers, summerstorm - my surgeon said I couldn't eat mushrooms, celery and sweetcorn :p I don't really care less about the first two, but sweetcorn would be a bit of a loss. However, I'd probably still try it and see, being such a rebel... >_>.

I forgot about adhesions: dang. When you say get my core strong, how do you mean? I would like to become fitter after surgery, but I wasn't thinking of doing any exercises beforehand - would be worried stomach exercises would hurt too much, tbh.

colitiscanuck - That sounds like it sucks a bit, tbh. I know what you mean about the low residue diet getting tiresome, and I hope I don't continue to be stuck on it for a long time after surgery. Hope you can eat a wider ranger of foods soon.

Heh, yeah, I wouldn't go mad with corn-on-the-cob. I'd just try a few pieces first all of all. It would be nice if I could still have my favourite Chinese soup, crab and sweetcorn.

Ah okay. I'll look into doing a few simple stomach exercises then. Thanks for that, I would not have thought of it otherwise.

Hi Lovetoski :p

My surgeon paid lip service to the idea of giving me time to think about it, but in reality - especially during the first appointment - she was more like, 'right, so when do you want to have your ileostomy then?' <_<. I was rather taken aback, especially considering that I thought the discussion was going to revolve around whether I should have surgery and, if so, what kind. That was getting on for a year ago; since then she has learned to be a tad more sensitive.

I wouldn't really say I can eat sweetcorn with Crohn's... :-/ I did used to be able to eat anything - not that I was symptom free, but blockages weren't a risk back then, so I could eat fibre. I've had a stricture on and off for probably 2-3 years now (though not diagnosed until a year ago), and that's made eating veggies far more problematic. It's easiset when the inflammation is kept down with Pred. When I flare up acutely, I can't eat anything - it all becomes a nightmare of pain.

I can sympathise with the fear of mushrooms. The little button mushrooms are okay, just about, but those rubbery mushrooms are lethal. Had a bad experience with oyster mushrooms on toast once - I'm sure it led to a near blockage. I am sometimes amazed at what gets through intact: corn, peas, whole coriander leaves... <_<. But nowdays I tend to stick to a low-residue diet 99% of the time: if I'm having stricture-related symptoms on 40mg Pred, I don't feel like taking chances anymore.

Did the physio help? Hernia prevention sounds like a good idea: last time I stayed in hospital, I was sharing a ward with a woman who was totally miserable because of her hernia. She had a fistula as well, but said the hernia bothered her more than the fistula.