Hi,
I'm new to the group, I've had a pouch for ten years and it seems that I've always had problems, some days are beter than others but I'm always worried about knowing where the bathroom is and hi frequency along with what foods work and what foods don't (I miss eggs and milk and pizzza)
I haven't been able to go back packing in years
So I'm curious about an illiostomy, is diet restricted? Could I still work as an electrician? (I can retire in 3 years) Could I backpack again?
Monday my GI doc will be taking a look at the pouch to see whats going on, I have high frequency, cramps and struggle to pass stool that sometimes is a watery light red on the toilet tissue.
Several years of taking Imodium, Cipro, Flagyl and experimenting with various probiotics. Now adding donnatal, Hydrocortizone suppositories,and messalimine suppositories,....and no relief.
I've grown tired the cramps, the panniced rase for a public restroom the broken sleep and of experimenting.
So I'm thinking about going external....what's the down side...would I be able to do more?
Thanks for listining.

Have you considered a kock pouch?
My son has one and he loves it.
Still has some diet restrictions but good as long as he chews well. Empties with a catheter 4 times a day or as needed. Anywhere if hiking!
There is a dr in LA and San Diego who does them, not sure about San Fran.

Ray I just went back to a permanent ileostomy on march 11th. Besides complications, the ostomy has been great. I can't believe how much time on my hands I have now that I'm not in the bathroom all the time. Of course you can be an electrician with an ostomy! And backpacking? Think of how easy it would be. No worrying about the bathroom. Since the aurgery, I've been eating taco bell like crazy- something that would mean a night in before, but now I can eat anything. If you're unhappy, I really woulf consider thinking about this more.

Thanks for the support,
Holly,
The I'll look into a koch pouch, but I worry that if it still stores food internally it may not work well for me....If I fast or eat small infrequent meals I seem to have less troule, problem with that is that I don't get enough to eat and loose to much weight.
Glad to hear your son is doing well.
Chelsea,
My concern for being an electrician is that I work in an industrial setting and I'm in any physical position imaginable while lifting, tugging or pushing on stuff...it can be pretty physical work at times.
March 11 is just short of 2 months ago....your healed already...no but pain??? Sorry you had complications with the surgery.

Thanks
Ray

The cramps is what I wonder about. Could be the drugs causing problems. Constipation. Cramps is also what happens with partial obstructions. I sent you a pm
I will be happy to go over diet issues and maybe see what the problem is if not medical.

My stomach has always been "tender". Even when it's not crampy it's full, blosted or sore and it's uncomfortable to sit the cat or rest a book on it. Passing stool is rarely a non event, usually it's an effort and quite often it burns the rectum...however in the current flare up the stool does not burn it's just watery stool...seems to be a lot of clear mucous with it that's sometimes pink to lt red in color.

I'm pretty confident that things will work out...I'm most likely going to go for an illiostomy....but I'll do a bit more research before I lock in on that choice.

Thanks
Ray

Hi Ray,

I reverted to a permanent ileostomy after 8 years with a problematic j-pouch and there is absolutely nothing that I can't do with Wee Willie (my end ileo) that I could do before with the exception of wearing a bikini.

With the right ostomy system and good supportive underwear (or ostomy belt) you should be able to carry on your job as an electrician. One of our ex-members is a state policeman and plays ice hocky with his permanent ileostomy.

Another of our members (JillM) has had a baby and is about to have another one since reverting to her ileostomy. She will no doubt say the same as me, there is nothing that you can't do with an ileostomy.

I am just so glad to be rid of all my "butt" issues too. No more butt burn, no more fissures, no more spasms, no more cramps and no more running to the loo in pain and in a hurry! I can eat what I want without it giving me excruciating pain on exit. Life couldn't be better!

Good luck with whatever decision you make. We are all here to support you.

Take care.

Shell

Thanks Jill,
I promise you won't see me longing to wear a bikini bathing suit, no matter what I decide to do with this crazy ileum of mine.
I'm jealous...I'm taking Cipro now and really miss my glass of wine.
So far I'm reading that at first,just like after the last J pouch surgery things are a bit dicey...loose stool and maybe a bit of pain in the rear. Then, after a few months things even out, it's just deciding what appliance works best...sounds like a cake walk.
I love doing photography and it will be
grand to be able to shoot a wedding without worrying about missing half of it...I wouldn't even think of doing that with my pouch.

Thanks so much for your support.
Ray

Ray, my stool was watery only for about two weeks. I don't have butt pain because for some reason my surgeon decided it would be better to keep my rectum in, then do another surgery later down the road. I can't remember his logic on this one, but I'm pretty sure there was a good reason.

Ray,

Because my issue was chronic pouchitis, I opted for hte perm ileo over hte Kock pouch. You can still get pouchitis with a Kock pouch and though my drs told me it was easier to "cure" than with the j-pouch, I was skeptical. I also love to travel and was worried that not all drs would be familiar with the Kock pouch when I was traveling (if I had an emergency). Since I am married to a wonderful man who has no issue with the external bag and I had no issue with it when I had my temp one, I opted for what I thought had the highest liklihood of complete success.

My pouch removal and perm ostomy surgery was the easiest of my surgeries - I know that is unusual and I feel blessed for it. I think for me, my body finally got rid of what was making it sick and just bounced back. I also did a mind body program and I do think it helped.

As for restrictions, I have none. I eat what I want, when I want. My brother is a chef and one of my primary goals was to be able to eat freely. I am drug free, except for 1 Immodium after dinner when I'm not pregnant and then I sleep through the night.

4 months after my surgery I hiked to Ramona Falls at Mt Hood (7 miles round trip). Bathroom? Who needs a bathroom? I didn't even have to pull my pants down to get my bag out, empty it and get back on my way. 7 months post op I kayaed for 5 hours in Central Florida. The funniest thing about both of these events is that I am NOT an outdoor girl. But I had this drive post surgery to get out and live and I did lots of things I normally wouldn't have done and certainly couldn't have done with my pouch.

Prior to the Mt Hood trip, I worked with a personal trainer to get in shape and did all manner of exercise, no limitations. With your work, you would probably want to use a Phoenix belt to give you some extra support, otherwise I don't think you'd have any issue.

Did IVF twice, now have a 2 year old and expecting #2 in July. My 2 year old kicks my ostomy daily, we wrestle on the floor, we run around the yard, we do a music class where we crawl, jump and run. No problems with any of it.

Only issue I've had is a near total obstruction during pregnancy #1. After the initial adjustment period (about 3 months) no skin issues, just see my ET nurse 1x a year for a check up.

Couldn't be happier with the results. BTW, I was 30 when I first got the end ileo (they just disconnected my pouch initially) and 32ish when I had the pouch out. I knew I was making this commitment for a very long time. I've never regretted the choice because I have lived so much in the past 5 years, it far outweighs any downside of having hte ostomy for the rest of my life.

Ray,
I had my reversal on the same day as Chelsea, and I had some self-induced complications, and DID have everything taken out. (sewed up my butt)

I can now eat anything and everything without any problems whatsoever.

Like you,
I'm sure my problems were not because of stuff passing through me, but the storing it. Now that it's stored in my ostomy, I feel absolutely great!

Each day it gets better and better (not exaggerating), and the toughest part for me is the butt pain and getting used to the ostomy again. However, I'm not worrying about where the next bathroom is anymore, and not having ANY more butt/pouch pain, which is GREAT!

Oh yeah- I'm sleeping through the night again, and all I'm taking is some gaxX on occasion when I drink too many cokes, beers combined with a ton of ice cream...

//Todd

Hi evaryone,
Had a scope done this morning...stlll groggy...Doc says the pouch looks good...waiting on the results of a biopsie(scuze the spellin)...Doc says Prednisone is next, hydrocortisone sup. aren't doing much.

Toddl, thanks for the input.
Back to sleep...

Hi Ray sorry to hear about all your problems.Ray you mentioned eggs,how do they affect you if you eat them?Just curious.

if he is like me--it is like they just shoot right through me. scrambled actually aren't as tough on me as my favorite over medium.

I can actually eat most anything, just have to watch the amount of my trigger foods (ham, shrimp and eggs)

Hi Anna,
Eggs and most dairy will cause hi frequency and serious butt burn about 6 to 10 hrs after I eat it...I can tolerate egg whites in limited amounts...yellow cheese is ok but the white cheeses can be horrid....
The latest news is that I had a scope don on Monday and the pouch is clean and ok except for some white spots the GI Doc says is from the Cipro...yesterday I saw my GP and the new idea is that the problem may not be the pouch at all rather the prostate...I'm now taking a Sulpha drug to address the infection in the prostate... the sulpha seems to be working, the past 20 or so hrs have seen a fair improvement in the way I feel and the frequency is dropping...next it's off to see a urologist.
Thanks everyone for listening and for your encouragements.
Ray