Still undecided

Not easy to make a decision when you have the added pressure of the insurance situation.

Because my husband's surgery was successful and his healing and recovery were with no complications, he needed to see the surgeon 7 weeks after the surgery.

It is tough when you have those "manageable" days as it certainly clouds your thinking on what to do.

Only you can make the decision but from what you have outlined it certainly sounds like surgery would/should make your life more manageable and predictable. One thing my husband quickly realized was all the time he had on his hands as he wasn't spending so much of it on the toilet.

Good Luck.

Yes, the bag emptying is a concern. I plan to order a night drainage bottle with 3/4-inch tubing to sleep in. The surgery would not be worth getting up in the night.

I worry about the skin problems, more from the adhesive itself than any leakage. From my own trial experience, I know it would feel more comfortable to change those bags every day, but that would likely be too expensive.

I also worry about the limits on lifting so much as a gallon jug of water for a whopping 8 weeks. That alone is a HUGE deal to me and is causing me to hesitate.

I don't think there are scheduled visits with a stoma nurse. I suspect I would have to work with one by phone. The hospital is too far to drive to very often and impossible during rush hour. I think for the most part, I should be able to manage most issues more effectively myself and with my own research.

As to how I feel otherwise, I'm very tired a lot. I guess the surgery won't help that. Hopefully, it won't cause any long-term loss of strength or energy. Other than the 4 1/2 hour mornings (it's not just the 2 on the toilet), the colon symptoms are occasionally uncomfortable, and I think that is due mostly to gas. It gets a little worse over the next day to few days. I find the abdominal bloating and pressure more than I can bear many times, and that's a major reason I'm seeking the surgery. Supposedly, this would eliminate distention and abdominal bloating.

I keep going back and forth on this decision, and I don't know if that means I should do it or not. I can spend over half an hour at the store picking out a banana, so you can imagine how hard this is. I'm not very resilient with regard to poor decisions.

hi Jack, are you a guy?

you remind me so much of myself before surgery, it's amamzing. it's like i'm reading my own posts 3 plus yrs ago :)

i suffered with colonic inertia for 17 yrs till i had my colon removed and a year later had the ileostomy created. the colectomy w/ileorectal anastamosis didn't work at all. i was so crushed that i couldn't quit crying day and night (tears were pouring while i was sleeping too). the decision was sooooo hard on me it worn me out. i think no matter how bad the condition is, this is something that cannot be easily decided, unless it's a matter of life and death, then the drs don't even ask your opinion. but having to decide your self on this, as you said, it's almost an impossible mission.

but having non quality of life is like not living either, even tho we don't die of it. reading the way you're describing your day it's like reading about my life several yrs ago.. it's no life, Jack. the abdominal pain, bloating, gas etc is NOT right and not a way to live.

i had my ileostomy 3 yrs ago and cannot stress enough how happy i am to have it. it gave me my life back. it doesn't limit me in anything in life. i can do whatever i want. it's just a different plumbing route, that's all, and it doesn't matter to me which way it is coming out. all that matters to me is that it's actually out!!! that seemed like a miracle to me after so many yrs it didn't.

the first shock after surgery is unavoidable. but after i got home, and the pain from surgery was better and i felt better, then i could actually see and feel how much the ileostomy is helping me and making my life so much easier, how good i felt - no more bloating, gas, pain etc, i then started to apprciate the stoma. and i remember when changing the wafer in the first 2 weeks post op looking at my stoma and thinking this is the most beautiful thing in the whole world, cuz it is giving me my health and life back.

i think you will benifit a lot from it too, Jack. i wish you best of luck and hope you make the decision that is best for you.

I specifically requested this be an end ileostomy so as to avoid the problem of anything bypassing the stoma and to ensure a better appliance fit. It will be reversible though as a permanent one was not even an option yet. He is attaching the end of the colon nearby underneath the abdomen so that it can still be easily reversed.

I worry about having it reversed because I don't see how I'd go to the bathroom with incision wounds on there. Would the waste not contaminate tissue that's just been operated on? Also, I have to massage extremely aggressively to get everything out. I doubt that can be done for several months if at all after surgery. I just have the sense that this surgery plus a reversal would be more risky and make worse the problems I have now. However, the option of converting to BCIR looks promising if this were to provide relief.

2b ColonFree, yes I am male. It's good to hear from someone in the same boat. Do the adhesives not get irritating? I know that a colectomy would be ten times worse than anything I'm living with. I don't know how other people cope with all that burning without developing other serious issues. I think years of liquid stool contributed to my pelvic floor contraction. There are some types of pain and discomfort and inconveniences I can manage better than others, and I sometimes wonder how long I could learn to live with the constipation. Anyway, I'm glad it helped you; I'll certainly take that into consideration.

Pluot, you have me a bit concerned. The product I mention was specifically for an ileostomy with the tube at 3/4 inches. Does that seem too narrow? Nothing's ever formed now, so it seemed to make sense it would be even less so post surgery. It's made by Nu Hope. They use a narrower tube for the urostomy. I also saw some very long two-piece pouch attachments that hold up to half a gallon that I know would work, though I imagine would feel a bit heavy. They are also quite pricey.

Post Edited (Jack Sprat) : 6/24/2013 3:16:25 PM (GMT-6)

My stoma nurse just told me today that a night drain is not a good option for an ileo - and mine is liquidy and extremely high output (more than 1500 cc a dy, even with narcotics and bulking medicines). They are more likely to get backed up. I usually just set an alarm for 3-4 hours after I go to bed to make sure I get up, and like Liz said, it's no big deal and doesn't tke more than a couple minutes.

I would be very concerned about the gap in your health insurance coverage, and if it's possible to wait until that is filled I would suggest considering that. There are a lot of complications that can happen in the first month or two after surgery.... I had to go back in to the hospital a week after with an abscess and I think my surgeon said something like 20% of people get readmitted fairly early on for complications. In the scheme of things, the abscess was not a big deal, but if it happened when I had no health insurance, it would have been huge. I also had some wound healing issues that kept me needing frequent contact w/a stoma nurse, and for a while i needed a visiting nurse to attach a wound vac..... this went on for seven months (then I had another surgery and several more months w/a visiting nurse).

I am not saying these things to scare you, or that they are likely to happen to you..... I am another one who is extremely happy I had surgery (for the opposite problem, though), despite all the complications. But you don't want a possibile complication to keep you in debt for a decade.... I so hate to make money part of the decision, but it is a consideration.

Hodaya, great to hear from you! I hope you are well, sounds like it!

I think I'm inclined to agree with Pluot, tbh. There is nothing wrong with you wanting surgery, but you need to think about it a bit more seriously. Sort out the wheat from the chaff. For example you mention not being able to lift anything heavy for 8 weeks as a 'HUGE deal': seriously dude. Do you realise how quickly 8 weeks will pass? If a job was at stake, I'd understand it a bit more, but like me you have the luxury of not needing to work to support yourself and a family.

As for a night drainage system for an ileostomy, this is the first time I've heard of one. As long as the output is liquid, it should work okay, but sometimes the output gets quite thick and gunky, like toothpaste. That sort of output could clog up a 3/4" tube, I should think: it's not that wide. I would certainly test it out beforehand.

I know that you say everything is liquid now, but taking large doses of laxatives will do that to you.

A colectomy is something I could not live with.

Huh? I'm genuinely confused, how do you think you can have an end ileostomy without a colectomy? The surgeon will remove your colon; he won't leave it dangling around uselessly inside you, severed from the end of your small bowel, which has now been stitched to your stomach to form the stoma.

Or am I missing something?

Yeah, I know about that. But Jack specifically mentioned getting an end ilestomy, as opposed to a loop one. This bit:

I specifically requested this be an end ileostomy so as to avoid the problem of anything bypassing the stoma and to ensure a better appliance fit. It will be reversible though as a permanent one was not even an option yet. He is attaching the end of the colon nearby underneath the abdomen so that it can still be easily reversed.

That just confuses me even more, tbh. Jack dude, you do know if the colon is attached to the stomach, it's a colostomy and not an ileostomy, right? It becomes an ileostomy when the ileum is attached to the stomach, a jejunostomy when the jejunum is attached, and so on. This may sound like pure semantics, but it isn't really: there are differences between a colostomy and an ileostomy. A colostomy is situated on the left hand side of the body, the output is more solid and stool-like, and the bags used are non-drainable ones. Reverse all that for an ileostomy.

Also, how can the stoma be bypassed? Output will always go through it, that's a stoma's purpose :-/

I'm probably misinterpreting or missing something. But I just can't tell what type of operation your surgeon is proposing.

NiceCupOfTea said...
Yeah, I know about that. But Jack specifically mentioned getting an end ilestomy, as opposed to a loop one. This bit:

I specifically requested this be an end ileostomy so as to avoid the problem of anything bypassing the stoma and to ensure a better appliance fit. It will be reversible though as a permanent one was not even an option yet. He is attaching the end of the colon nearby underneath the abdomen so that it can still be easily reversed.

That just confuses me even more, tbh. Jack dude, you do know if the colon is attached to the stomach, it's a colostomy and not an ileostomy, right? It becomes an ileostomy when the ileum is attached to the stomach, a jejunostomy when the jejunum is attached, and so on. This may sound like pure semantics, but it isn't really: there are differences between a colostomy and an ileostomy. A colostomy is situated on the left hand side of the body, the output is more solid and stool-like, and the bags used are non-drainable ones. Reverse all that for an ileostomy.

Also, how can the stoma be bypassed? Output will always go through it, that's a stoma's purpose :-/

I'm probably misinterpreting or missing something. But I just can't tell what type of operation your surgeon is proposing.

He's actually referring to the fact that the unused colon will be tacked to the inside of the abdominal wall merely to keep it in place inside the body. When I had my colectomy but the rectum was left intact, the rectum was tacked to the inside of the abdomen to keep it from flopping about

Regarding output bypassing the stoma, loop ileostomies have two openings: one on top, where stool comes out, and one on the bottom that leads down into the rest of the intestine. It's possible, though not common, for output to come out of the top opening and get sucked down into the bottom opening, resulting in waste passing into the otherwise unused intestine (and eventually out of the anus). For someone with a functional problem, this could cause a lot of pain.

I myself am still a little confused about JS's attitude towards a colectomy, but otherwise I think I'm following...

Regarding the two liter pouch, man, I do not think you would like to wear it throughout the night. Unless you can stay in one position and make sure the pouch is supported well, it might get heavy enough to pull on the wafer and affect your seal (leading to possible leakage). I really think you'll find it's preferable to wake up once in the middle of the night and not have to deal with anything special. I have an idea: Drink a big bottle of water right before you go to sleep tonight. You'll wake up needing to pee after a few hours. Hopefully you'll see that stumbling into the bathroom, doing what's necessary, and going back to bed is actually very tolerable

Sorry, I'm still really confused... A colectomy means your colon would be removed. Your digestive tract would effectively *end* at the ileostomy -- your pelvic floor wouldn't even be involved anymore. I'm sorry if I'm missing something obvious because I don't have experience with functional disorders, but if anything I think you would probably do better with a colectomy... After the colon is disconnected it will still produce mucus that will need to be evacuated by sitting on the toilet and going "the normal way," which I understand from other posters with similar issues is still difficult. As far as I know, the only positives to NOT having the colectomy are the possibility of future reconnection and that the surgery is a bit less complex.

I had colonic inertia and anismis. I got my ileostomy 3 years. First a temporary loop, then I got the total colectomy with the end ileostomy. This is by far the best decision I made in my life. It improved my quality of life 100%.

My bloat and distended belly is a thing of the past.

Taking care of the stoma took some getting used to but was nothing compared to the hell of colonic inertia.

I was worried. Just like you are. Now I wish I would have done it sooner. Years sooner. I wasted years of my life that I didn't have to waste.

My question is did you get a transit marker test? Anal manometry? Defecogram?

Because if your colon works to move the stool and it only gets hung up at the rectum, you know if you have anismus, then I think you could get a colostomy?? Idk. I'm just thinking out loud here. Lol

Jack, i think you're confusing things a bit. colectomy = colon-ectomy - removal of the colon. any word that ends with ectomy means removal of the organ, like hysterectomy, splenectomy, pulpectomy etc. it doesn't matter whether they attach the end of the ileum to the rectum/j pouch or bring it out the abdomen to create a stoma - removing the colon is removing the colon, that's the meaning of colectomy.

Liz, nicecup, the byepass is not when the stools is out from the top hole then enters the lower one, that isn't possible. the stools bypass through the loop down the stream into the unused part of intestine, before it comes out from the top hole. it is only very small amounts that bypass. most of the stools comes out through the upper hole into the bag. anyway, it doesnt usually happen and if it does, it means the stoma was not done right.

Jack, i know of ppl who had the same surgery you're talking about - leaving the colon intact. the problem with it is that the colon will still produce mucous. for ppl who can't expel it through the anus, the mucous builds up in there and causes a lot of discomfort and pain. personally, i wouldn't want that. i didn't see any logic reason to leave a paralized organ inside of me, if there's an option to have it out. but that's just me, and everyone is different. maybe it will be ok for you.