[Luther Maze]

I start this topic to see what has changed in the past 4 years since the imagine a voluntary colostomy would be a relief? topic was posted.They mentioned a stool smell, and a temporary colonoscopy bag, although I woundn't mind a permanent one. as for insurance covering it. One would think county insurance would pay for it beings as one not working would be able to get a job thus paying taxes again, then again that's to logical.

 

[KatieCC]

I had an ileostomy for UC temporarily. I'm quite likely getting a permanent one in the very near future. I'm not extremely happy about this. Here's a reply I posted to another person on this subjectKate Chouteau-Carondolet Senior Member Member # 14288 posted 04-15-2003 04:34 PM --------------------------------------------------------------------------------I had an ileostomy for UC.You don't want an ostomy unless you have to have one. I mean, it's great if it's your only option, have your colon removed or you'll die, but trust me, if you have any choice in the matter, you DO NOT want an ostomy!Yeah, they leak. Picture waking up in the morning, with you and the entire bed covered in sh*t. It WILL happen sometimes, and it's horrible. It makes you afraid to sleep.Or having a leak in public. Or all of the sudden the clip pops off the bottom of your bag, and there's poop running down your leg.Imagine having sex with a stuck to your side... how sexy does that make you feel? You can never be naked ever again, you will always have your bag.Then there's constant skin problems, without as much colon, the bile and stomach acid is not reabsorbed and the poop can burn its way through the bag adhesive, it will burn your skin. Because you're always ripping off bags and sticking new ones one, your skin will get so irritated, and then it just gets worse and worse because you cannot ever go without wearing the bag.You have to empty the bag probably 8 times a day, more if you don't want it to fill up too much and show through your clothes.Trust me you'll still spend plenty of time in the bathroom.And what makes you think a bag will get rid of the cramping? If your cramping is caused by a food intolerence, or stress, or your intestine are very sensitive, how would you know if having a bag would get rid of it? How do you know you won't just get the bag and still have the same problems? It's not like Crohn's or UC where you can see the disease and what parts to remove. And lastly... having an ostomy has such a horrible effect on your self image, your self esteem, everything. When I first got home from the hospital with mine, I had to have my mom change the bag because I couldn't look at my stoma without throwing up. I felt so disgusting. I felt like I was never clean, I always had a bag with poop in it attached to me, I was always touching poop when I changed it, when I would take a shower without the bag on there'd ben poop coming out my stoma and running down the drain.. it's awful. I swear.Have you ever seen a stoma? here are some sites. http://www.beardmorebros.co.uk/website%20pages/uc.htm http://www.ostomates.org/stomapics/ileopics.html and a last little point... I seriously doubt you'll find a surgeon willing to perform such a major surgery on someone without a real medical need for it.Kate

 

[Luther Maze]

Thanks for clearing that up for us.I don't think I'll be asking for one any time soon!

 

[knothappy]

I agree a bag would be awful unless it meant your life, but what about the new operations, the J pouch that you irrigate at your convience daily and then you are free for a few days!1 A dear elderly friend had one and traveled a lot, she had Ulcerative colitus and fought to get this, she said it was great not to have to worry about crapping your pants at the age of 65!She had a small opening on her abdomen that she covered with patch.I am about ready , I just about have had it with disease. I am missing out on life, on enjoying my Grandchildren's activities. You cannot live on Imodium, Xanax, etc(which do not work 100%). the worry is always there, you never totally enjoy yourself. You cannot go to all these activities and spend the whole time in the bathroom while your grand child is on stage dancing, or playing a sport!! what is the sense of going?? Not to mention they always go out to eat afterward and I slink home like some dog with her tail between her legs, always begging off for this darn disease.

 

[KatieCC]

Knothappy- please don't take offense to this- but you have no idea what you're talking about. You're confused about the different pouches, and there are a ton of different aspects to each pouch that you obviously know nothing about. I'm not trying to be rude- but this is really my "area of expertise" since I have been living it firsthand. It far from the miracle operation you seem to think it is, and it's a MAJOR proceedure. My first surgery was 9 hours, 17 days in the hospital, second was 5 hours, 9 days in the hospital. did you look at my signature? I HAVE a j-pouch. It may work well for some people but CERTAINLY not all. My j-pouch operation has been a complete failure and I have to have it reversed to conventional ileostomy. A j-pouch is basically the small intestine connected directly to the anus. At BEST, you will have diarrhea 6-8 times a day, and wake up 1-2 times a night with diarrhea. Many people have to alter thier diets to keep the number of bowel movements down and take anti-diarrheals for the rest of their life. This probably doesn't sound appealing to most people with IBS, because in a was it's very much like having IBS. People with UC benefit from a better quality of life from this surgery because they are getting rid of their diseased, bleeding colon and are able to discontinue the dangerouis drugs, but I don't see how there would be any benefit for someone with IBS.Or, if you're in the up to 20% that end up with a horror story like mine, you go 20 times a day, 4 at night, with urgency, pain, and incontinence- you end up having to go back to an ileostomy. Or if you really end up with a horror story, your pouch ends up perforating, or with severe bleeding, or worse. What the woman you're talking about has is NOT a j-pouch, it's a continent ileostomy. I don't know much about those, but they too can fail and have many complications.Both these operations ivolve remiving the entire colon. You MIGHT be able to find a surgeon who would do a colostomy for IBS if you had a major problem like serious incontinence but I guarntee you will NOT find a surgeon to do the 2 or 3 major operations for a total colectomy and pelvic pouch construction. There is just NO indication for such major surgeries when it comes to IBS. That would be like amputating someone's leg for a stubbed toe. I'm sorry to go on such a rant, but please... know what you're talking about before you make a post like that.Kate

 

[knothappy]

Sorry if I sounded as if everyone should run out and get a bag and their life would be a bowl full of cherries. My friend had a BCIR at a surgical center in Florida where they specialize in this. I sent for a pamplet on it and in it they said the pouch is internal and is self sealing, you can control disposal by decideing when and where to empty it. after healing you can empty it at your conveience usually several times a day.Those are not my words, it was what I read. i have read posts on this board from people with IBS diarreha that are so depressed that nothing works, they want to end their life. Thank goodness for the wonderful people on this board, for they immediately rush in with numerous replies begging them not to do something foolish, IBS D is very serious to some. They feel like they are a pain to all with their complaints, the doctors shoo you off and you have to go from one to another until you find someone who will listen, those without insurance cannot do this. doctors are not free.Yes , the surgery is serious and costly, but for a certain few who are tired of living because of this it might be an answer.

 

[KatieCC]

knot- the thing is, like I said in my first post on this threads, a surgeon might do an ostomy for IBS, but no one would ever do a pelvic pouch (j-pouch/kock pouch/BCIR) because no one knows what CAUSES IBS. It's not like Crohn's and UC where you see the diseased areas and take them out. If IBS is caused by a food intolerence/allergy, or an oversentitive gut, or a wrong balance of bacteria in the gut, or the brain/gut connection, or is made wore by stress.... what makes you think having a pouch would help? There is no way of knowing whether you'd be well, or whether you'd just have all the same problems 10x worse (pain, D, bloating) because now you had a pouch made out of small intestine that still had something wrong with it (whatever the cause of that problem may be)Kate

 

[knothappy]

Sorry to rile any feathers, you have been there with all the surgery and the pain, I have not.The grass always looks greener I guess. I think I am grasping at straws with this disease and sometime get really cranky and depressed over the way it controls my life at times, especially the times you have somewhere to go. I just wish something would help and keep helping, the meds do it for a while , then IBS seems to override any med. prescripton or over the counter!!