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Posted 4/30/2013 4:33 AM (GMT 0)
I've been lurking here for a little while and have for several years now gone back and forth debating whether to get an ileostomy for a nonrelaxing puborectalis. The biofeedback and botox injections didn't help, primarily because it is a problem of stool consistency. I tend to get constipated and have been semi-dependent on milk of magnesia for many years to keep me regular. It turns the stool to a fast-moving liquid (as does anything that works well), and over time that is bad for the pelvic floor muscles. I often spend an hour or more on the toilet and have quite a mess to clean up. It takes some time to get all that sloshing liquid and gas out, and the occasional burning from the enzymes and bile make it harder and more painful. It takes almost as long to clean up afterwards because it splatters everywhere. The unpredictability along with my body's reaction to being rushed or needing to hurry has made me too nervous to ever commit to working, and I'd really love to be able to work full-time.

On the other hand, I'm okay most of the time, I don't have any sort of IBD or colon inertia (probably more something like IBS-C though one doctor mentioned a "large" colon), no cancer or structural abnormalities, and I've never had any bleeding or bowel-related emergency. I've never even been in a hospital before except for the botox injections and some basic diagnostic tests.

So this creates quite a dilemma. You can see why any feeling of certainty with a decision tends to last only a few hours. I've put my life on hold for over 5 years because of this indecision, and I still can't decide what to do. People's experiences are so highly variable, and few people have had the surgery for the same condition.

My colorectal surgeon would do this laparoscopically as a temporary end ileostomy. My research indicated a loop would be riskier, harder to manage, and result in possible bypass of some stool or gas. The plan is that I have the options of keeping it, making it permanent, or reversing it at any time. However, I know such choices cannot be guaranteed, and all come with added risk.

I don't want to be running to doctors and/or hospitals every 2-3 months or more for some new problem or maintenance issue. My primary concern is quality of life, and I know the surgery could possibly fail to improve it or even worsen it. What's more, I still may not be able to find and succeed in full-time work. That's the main reason I hesitate. I would not even be thinking about this were it not for my inability to work. I know I can't depend on my parents my whole life.

I just don't know what to do. Any thoughts or advice?

confused
Posted 4/30/2013 9:14 PM (GMT 0)
Good luck with this choice. My experience way NOT the norm. Just some ideas:
1. Research potential problems with stomas.
2. You kno w what you have now vs the unknown
3. Are you in the bathroom for a set amount of time in the am then are ok rest of day and could work part time?
4. Would miralax work better and be less messy.

An ileostomy stoma saved my life as I got bad injury/scarring in a GYN surgery. Was fine 4+ years then got a scarring stenosis. Have had 3 failed revisions since. THIS IS NOT THE NORM and MANY other success stories on here that you will get. One girl who used to post a long time ago actually GOT her life back after she got her ileo and has since gone to school and has a successful career.

If not a lot of previous surgery and done lapro by a very good colorectal surgeon you may do just great. Just trying to give you two sides to the story and some ideas.

I assume that you have your colon still in you and are all intact except this issue you mention.

Just need to know that if you get an ileo and get the norovirus you are at great risk for dehydration and would maybe need an iv. Also the colon is the organ that absorbs water back into the body . After awhile with an ileo the small bowel takes over somewhat that function but never like the colon did.

Also consider your skin type. Do you have sensitive skin? The appliance is always on you. Skin issues can occur but there are many types of products to choose from.

Just things to consider as you ponder your decision. Best wishes. Rosemary
Posted 5/1/2013 5:29 AM (GMT 0)
Thanks, Rosemary.

Number 2, the unknown, is what scares me most of all.

Unfortunately, my bathroom time is not fixed. I can't predict fully what days or hours I will be available, and I would have to factor in how far I'd have to drive. Regardless, I don't think I could make a living on a part-time income, especially with no full-time work history.

Miralax does nothing in manageable doses. As another one of those water-drawing agents, it would only worsen my problems if it did work. I can't deal with any more water in my colon.

Your mention of prior surgeries is what scares me about reversal if I were to be unhappy with this. My surgeon had me thinking that was the answer to any worries about potential problems with the stoma. However, I gather that nothing is ever quite the same after this kind of surgery and know that the risks go up.

I do have dry, sensitive skin. I actually tried a few pouches on. A Convatec left a horrible adhesive residue, but a Coloplast and Hollister did not. All those stickers covered over half my abdomen, and that was a nuisance. I didn't think the sticker part would be so big. Also knowing already what that burning is like on the other end, I would never want to have to deal with any leaks. I've heard being thin makes leaks more likely. To make matters worse, I'm cold intolerant. I like heat and humidity, and I take lots of hot baths and showers.

I have talked to some people who felt this surgery was a no-brainer given my circumstances and others who feel there surely must be some other solution. I really feel the same way. I just have nothing left to try.

My mother would prefer I not have the surgery. Besides that, her health is such that she needs me for some things I might need help with myself after surgery. That creates somewhat of a dilemma. Her opinion also has considerable influence on me.

Just facing this decision is driving me mad.
Posted 5/1/2013 12:19 PM (GMT 0)
I think at this stage you just need to just make a decision. You seem to have a colorectal surgeon prepared to do the surgery, so persuading a surgeon to do it is not an issue.

It's not an easy decision to make. I cannot make it for you, because I don't know what it's like to live with what you've got: only you know how much you can bear it. You seem to have entirely ruled out working as a possibility: I don't really know how much your bowels genuinely interfere with your life and how much of it is a mental block. I'm not saying you don't have a problem, you clearly do. But most folks who have Crohn's or ulcerative colitis manage to work full time, and those are not socially-friendly diseases either. I just can't help feeling you have other barriers to working, which at the moment are masked by the problem with your bowels.

I could be wrong. I really cannot tell. But if I am right, having an ileostomy won't solve that: you'll just find things to fixate about having a stoma, which - if I am honest - is quite easy to do even if the operation is a success. In some ways I was a much more blatant candidate for having a stoma than you, but I still put off the decision for a year. The only reason I could hang on for as long as I did was due to high doses of steroids, the only thing keeping me out of hospital.

But it was still a tough decision for me to make, in part because I was not in desperate pain and could almost live 'normally' on the steroids. So I could pretend things weren't as bad as they seemed. Tried coming off the steroids one last time; it utterly failed, and that's when I phoned the surgeon's office.

The one thing I resolved to do was not to back out once I had set a firm date for surgery. I don't know if that helps you at all, but it helped me in a way. I was lucky to only have a 2-week to surgery, though; two months and I think I would have gone out of my mind in the meantime.

Erm, I have to go now and I'm not sure if I've been the slightest use whatsoever. Basically, I think you should make a decision and accept uncertainty. So, so much easier said than done. But if you are truly convinced you cannot find a way to live as you are, I would cautiously recommend surgery.
Posted 5/1/2013 6:35 PM (GMT 0)
I'm just going to address your appliance issues, because I'm not sure I understand the medical side of this.
The bandaid part can be cut back to make the area smaller, also there are different sizes you can get. Hollister has a really big wafer, convatec is not as big, neither is coloplast.
Once you get a good system leaks aren't common. Being thin won't be a problem if you have a good stoma. Being heavy is a problem, because of skin folds. A flat stomach is easiest to work with.
You can take hot baths and showers and get in the hot tub. It won't matter. If you take 5 a day it might shorten your wear time, but otherwise you should be fine. I live where it is humid and that doesn't affect my weartime either.
As for the dehydration with the noro virus that rosemary mentioned, that can happen to anyone, it is common with that virus. But you will need to be careful of getting dehyrdated. Just make sure you drink more water than you think you should.
good luck!
Posted 5/2/2013 4:05 AM (GMT 0)
Jack Sprat,

.....Love the user name! anyway, yes nothing is ever the same after bowel continuity has been broken. Successful reversals are possible and very probable in the right hands and for people who if this is done laproscopically especially and who have not had a LOT of other surgeries especially not open surgeries.

There is always the possibility that rejoining bowel ends if you wanted reversal that a stricture or narrowing MIGHT form where the rejoin is, therefore causing an issue. SO all this your surgeon is saying is true he or she can do this and can do that. BUT how will your body respond to anything is unpredictable as we are all different.

I had a similar situ as you. NO disease but an incomplete rectal emptying issue that was really getting on my nerves for 4 years, making me miss whole mornings of my teaching job, and was ongoing. I was running back and forth to the john every morning for about 4 hours then trying to get to work on time. At the time I was also care taking my mom and and aunt and getting the aunt into a nursing home. So i had all the outside stuff happening too.

I should have just retired early as i ended up that way anyway. What I was told from a defecogram scan was that I had a sigmoidocele where the sigmoid colon dips in between the rectum and vagina as I had had a hysterectomy prior and that space just opened up over time due to absence of the uterus. The rectum got compressed and thus the divided ongoing moves. I thought long and hard about this did not just dash off and have sigmoid colon removed for a non-disease issue. Went on multiple consults that all said same thing based on that same scan. Have sigmoid colon out and the ends joined and the space closed. I was not told they were going to staple the ends together. I assumed they would sew them. WHile the docs I went to were in there they "fixed" other internal prolapses I did not have and did not consent to thus making a scar tissue mess. I need to emphasize that these docs were NOT the norm and I can guarantee you you would NOT run into this situ!!! This was exceedingly unique and very unfortunate for me to say the least.

End result: as sooooo much had been done open surgery, I developed a severe stricture at the "join" then I got adhesions on my small bowel that gave me small bowel obstructions. Took me a year to find a doc to get the adhesions off small bowel and the only thing that could be done was an ileostomy. I was like let's go for it as it beats being dead. I had a FABULOUS 4 years and literally travelled the world and went on 13 major cruises and learned to ballroom dance I was soooooo happy to be alive and well with a stoma. I found the products that were skin friendly to me and NEVER had a leak all that time.

Then last March out of nowhere, that good stoma stenosed severely at the abdominal wall level with scar tissue. i thought scar tissue grew in sooner; maybe it had been scarring in gradually but I was eating bland but pretty normal. I was satisfied.

3 stoma revisions over the past year have all stenosed badly and I am now facing a probable relocation of the stoma to the other side. Have had to live on Boost VHC for 6 months as that is all that will pass. It is this thick liquid I mix with decaf coffee. I have vitamixed deliscious liquidy soups but for unknown reasons I have a horrid time passing them. My stoma is stenosed angulated and has two kinks behind it. The doc I am dealing with is one of the best in the USA but he has flat out given me all the big list of things that can go very wrong with so many past surgeries when he does this upcoming surgery to try and get me a good stoma. Honesty is good tho. He will do a good job I am sure. How my body will respond, who knows?

If you have not had multiple prior open surgeries as I have I can about 95% guarantee that you would likely do very well. And again my experience WAY NOT THE NORM. This is just the domino effect that I experienced. It was like who knew?

The ostomy products nowadays are plentiful with tons of choices. I am sure you could find the one that suits you and the supply companies are super about sending out samples. That was a good idea to try a few pouches on your skin.

Are there any jobs you can do from home? am trying to think of some like maybe some research type of job, telephone sales, some type of real estate type work maybe? i am purely thinking outside the box for you. That way you could just dash off to the john whenever.

Get your input and your data. Do research. do consults. THEN most important take a break and go do something totally different like maybe volunteer at an animal shelter if you like animals or whatever it is you like. Your answer will maybe come to you when you're not thinking about it?

Good luck. RJ
Posted 5/2/2013 5:20 PM (GMT 0)
I see myself in you. I had your issues prior to being diagnosed with an atypical gi disease. I was constipated ever since I can remember. I didn't want it to control my life, but I never felt well. Was often teased in school. I was so skinny from not eating because if I ate, I felt terrible because I couldn't defecate. I suffered until things started building up and eventually I got diagnosed during a flare-up. But the diagnosis was unseen and rare, couldn't get much medical help. I too tried Miralax, I uped the dosage because it's the only nonaddictive medicine out there. I started juicing, more fiber pills, gosh it was exhausting. But I could only have a bm every 2/3 weeks or so.

But I must say, I tried EVERYTHING! I exhausted all avenues. I tweeked everything, used everything, combined everything. My colon was just nonfunctional. But my disease is what lead me to surgery. I had to, and in the end, wanted to. If I didn't have my disease, I don't know what decision I would of made.

You stated you already have a mega colon, so something's been going on.

Surgery is serious, it shouldn't be taken lightly. You have to live with that decision. My parents are deceased, I actually had my colectomy a month after my father died. If they were alive, I'm sure they would be on the fence too. I don't know about your medical team that you have in place, but with my disease they still didn't want surgery. But then it became emergent.

My ultimate suggestion is to, if you haven't, exhaust every option regarding fiber supplements, ways to control your bowels. Also, have a great GI that will support you in what ever avenue you need to go in, meds or surgery. Then, choose the best colorectal surgeon. One that listens to you, your needs and what you perceive your quality of life to be. Research and perform the proper diagnostic testings. You have to be certain!

Best of luck and wish you much health!

Post Edited (windy city) : 5/2/2013 12:29:57 PM (GMT-6)

Posted 5/3/2013 7:35 PM (GMT 0)
I want to thank you all for your responses. It certainly goes to show how hard this is. It just seem there is no way to say even what the odds are for various complications. It would just be good to know whether some complication has a 2% chance or more like a 50% chance. I can't even tell that much. I had asked my surgeon's office whether there was much risk of adhesions and obstructions, and they said "yes." I don't know if they just missed the "much" part, or if nearly everyone gets something like that. I at least wish I had some numbers or something to inform my decision.

Fortunately, this is one of Dallas's top colorectal surgeons, and he is very experienced. He is at the main Baylor Hospital, which I've heard is one of the nation's best. It does seem to be very well-run. Anyway, I feel pretty confident with his expertise.

The psyllium offered some relief from the burning, and it made things less watery initially, but just a small dose caused intolerable gas and bloating. It was the only thing ever to make milk of magnesia not work much after 14 years; and it still left part of the colon with watery contents. Other fiber supplements do nothing. Eating very coarse forms of insoluble fiber helped for about a month, but then it stopped.

The bottom line is that anything that helps helps only for a few days and then either stops or causes other problems. There will either be intolerable bloating and gas, burning and spasming of the pelvic floor muscles, or both. Whether living with the pouch is better or worse is a complete unknown.

As for work and schedules, I go before and after breakfast and sometimes after dinner as well. It can take from 30 minutes to 3 hours, but normally takes one hour. I have no way of predicting or controlling anything other than which days I go. Besides the discomfort, I suspect it's risky not to ever empty bowels more than once a week, so I take it every 2-3 days depending on how bloated I am. Having to tie that time to meals and also eat sufficient amounts to maintain a safe weight rules out any career that would ever pay all the bills.

As importantly, it exhausts me and drains me to go to the bathroom. I have to massage everything out quite vigorously such that the skin on my abdomen has rough spots and the muscles are sore. Working from home would help, but I still don't see how I could make 40 hours each week.

I can't imagine the output of an ileostomy would differ much from my current output with milk of magnesia. It looks like a good quart at times, it is liquid, and I see everything from cocoa powder to rice grains and tomato peels sometimes in as short as 8 hours. In that respect, I know what to expect. I already drink 8 cups of distilled water plus the liquid from food and other drinks, and I don't think I will need more at my weight. I would not touch any Boost or Ensure type supplement or liquid protein drink to save my life. For carbs and calories, I can manage maltodextrin (generic Polycose), but I can only get protein and vitamins from dry foods. I suspect that won't be a problem though. It sounds like most people are eating solids by the time they leave the hospital.

I have this scheduled for May 14, and I'm on the verge of cancelling. I'm terrified, and I just don't have enough consistent information to inform a choice.
Posted 5/3/2013 8:29 PM (GMT 0)
It would just be good to know whether some complication has a 2% chance or more like a 50% chance. I can't even tell that much. I had asked my surgeon's office whether there was much risk of adhesions and obstructions, and they said "yes."

I feel you on this. My surgeon never seemed to want divulge statistics either. I could not tell if it was because she had no idea or didn't want to scare me off. Anyway, I checked my IA Journal, which has quite a long article on adhesions and obstructions. Tried to find the article on their website, but it isn't there. So to sum it up very briefly, all abdominal operations seem to result in adhesions forming, but the number of adhesions formed is extremely variable. The lifetime risk of needing surgery for an obstruction caused by adhesions is estimated at 2% - ie, 2 out of every 100 people who have abdominal surgery may need surgery for obstructions at some point in the future.

The vast majority of obstructions caused by food getting stuck in a kink will resolve by themselves; just wait it out with fluids and painkillers for 12-24 hours. I should add that obstructions are not an inevitability of ileostomy life, but they can happen. I'd like to know the percentage of ileostomates that suffer from obstructions, personally speaking.

Anyway, I hope that helps a bit. Is it surgery you are having on the May 14? I'm not surprised you are nervous, but given you seem literally unable to move on, my inclination is to say: have the op.
Posted 5/3/2013 10:25 PM (GMT 0)
I found a link (http://www.surgeryencyclopedia.com/Fi-La/Ileostomy.html) indicating that the risk for obstruction is around 15 percent and about half that for a continent ileostomy. It says 20 to 25 percent will require future surgery (for any reason). It looks like a fairly high rate of risk, but it does not say if it is laparoscopic or open, temporary or permanent, loop or end, or what kinds of problems those people were or were not experiencing before surgery.

I know there is a danger in lifting things after surgery. I assume that applies to carrying and not just bending over to pick things up. I am wondering though if there is there a danger in bending over after the procedure? I just picture all this blood gushing out if I bend over to pick up a piece of paper or trash or something.

Also, is any sort of local anesthetic used or available after this type of surgery? It would seem to me that would be of more benefit, but I really have no idea what this type of pain would be like.
Posted 5/4/2013 1:27 PM (GMT 0)
I know how you feel I just backed out of my end Ileo surgery for this month, I know I deal with pain everyday and get woke up every morning with a gut ache, but researching the Ileo, it seems 50-50 on the pro`s and con`s.. my friends and family say go for it because I`m strapped to the toilet 2\3 of the day and on pain med`s which just plain suk`s , everyday I say i should have just done it then i tell my self it`ll get better on it`s own which i know it won`t,,, either way it`ll have to be done just a matter of elective surgery or a ruptured colon.. and emergency opp. good luck with what ever you decide?
Posted 5/4/2013 1:38 PM (GMT 0)
I have an end ileostomy due to an intestinal perforation, so my ostomy was not one given to a condition where I could give the procedure prior thought.

I want to add that I find living with an ostomy fairly simple. Not a "big deal."

I was able to find a ideal ostomy system for me and I barely notice that I am wearing a wafer/bag.

For me, the "new normal" has not been a bad adventure.

- Karen -
Posted 5/4/2013 2:27 PM (GMT 0)
My sister unexpectedly 2 weeks prior to my husband's scheduled surgery also ended up with a permanent ileostomy. Both of them had UC that did not respond to medications. My sister didn't suffer quite as long as my husband did but her emergency surgery came as a big surprise.

It has been 2 1/2 years for both of them and they both have done fine up to this point with no complications. Hopefully that will remain the case for many years to come.

Once they found the appliance that works well for them, they basically do a full change 2 times each week. No leaking issues or untimely accidents up to this point in time after the first few months of finding what worked best for them.

Initially in the first few months of the learning curve there were some situations....a few leaks causing a change here and there not on the usual schedule and one "blowout" due to eating way too much chinese food one night a couple of months after surgery. My husband had one accident in the first month or so when the wafer leaked while sleeping but it wasn't a bad mess and we just stripped the bed and changed the sheets and in the shower to do a full change.

Instead of using the waterproof pads under the sheet... as they shift and move and bunch up we got a quilted waterproof mattress pad cover. No accidents since we got that over 2 years ago.

Yes they have a new normal now but they also now have their quality of life back. My husband and I are free to travel and get back to enjoying our retirement. My sister has a part time job of 25 hrs a week and back on the go again.

Having a good CR surgeon is a major component of all of this and it sounds like you definitely do.

If you do go through with the surgery be sure to be marked prior to the surgery and wear the type of slacks/jeans that you prefer so the stoma can hopefully be placed to accomodate same. I assume you will have access to WOCNs who are worth their weight in gold helping you with your appliance needs and after care issues if there are any.

If you haven't already....check out youtube and type in OSTOMY. There is a wealth of info shared with ostomates that will probably be a big help. It certainly was for my husband prior to his surgery and really helped take the fear and anxiety away. Best of luck.
Posted 5/4/2013 3:08 PM (GMT 0)
A lot of times the people with complications are people from emergency surgeries. And that makes sense. I did have to have a surgery for adhesions about 5 years after my first surgery. My small intestine decided to just twist around itself, not a fun feeling,lol. But even with that I am happy with my surgery choice. I even told my dr that at least I had gotten 5 good years I wouldn't have had so I was ok with this.
As for bending and such, for the first few weeks you have to be very careful bending. You won't feel like it anyway, it will hurt. Unless you have something beyond crazy happen to you bending over to pick up a piece of paper won't result in blood gushing out. It will be at least 6 weeks before you can lift things, but even after that you will need to be careful for a while. If you can strenghen your core before you go in, it will be a much easier surgery. And if you work on keeping it strong you won't have as many risks with lifting after surgery.
Posted 5/4/2013 10:27 PM (GMT 0)
If I had IBD or anything that would get worse over time, this would be a lot easier. I can't really even find anything on anyone having it JUST for a diagnosis of nonrelaxing puborectalis. However, I also cannot find anything on anyone developing any sort of pelvic floor problems in response to liquid stool.

I could live with the moderate constipation if the gas and bloating weren't so severe. The gas is so uncomfortable that I sometimes spend an hour aggressively massaging my abdomen to get it out.

Because of the bloating from gas and water, I feel like my abdomen could dodge bullets, although the massaging I do while on the toilet makes my torso quite sore after a while. A PT told me that I could never overdo the massaging or hurt myself, but I wonder.
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