Regretting Ostomy - Seeking Support and Advice

I inherited a neuro disorder at 20 and spent the next 5 years having 15 BMs/day, constantly smelling like crap. As a result, I had no personal life and spent most of my time working from home. Bowels aside, I was very fit, healthy, comfortable, and extremely productive in a skilled high-tech job.

In 2013, I got a colostomy/ectomy. Since then, eating causes crippling bloating that leaves me writhing with discomfort, until I flush my guts out in a long, painful irrigation the next day. I fast during the day, eat a liquid dinner, and spend the evening clutching my sides in pain. I'm a bombed-out skeleton with a bloated stomach, and I have to work a demanding job half-starved. I also smell like crap 100% of the time, so I'm still completely isolated. I spent 10K on surgery, supplies, and follow-up tests that utterly failed to diagnose the bloating/smell. I have zero quality of life and honestly wish I was dead. I'm 28, and thanks to the ostomy, my life is basically over. The only reason I haven't shot myself is because there's a decent chance they'll have 3-D printed colons in 20 years, which would mean a normal life again.

Anyone else in the same boat?

Hi J.  So sorry reading your story.  I don't know the statistics but many of us got our lives back after the ostomy.  I wish you could get a diagnosis.  To me it seems similar to what people with spinal cord injuries go through.  I have no experience and maybe should just shut up but it hurts me to read your situation and you certainly deserve better.  Can you get another opinion, a dx?  Maybe a forum dedicated to neuro disorders like http://sci.rutgers.edu/forum/index.php. can work.  Please find help and keep us posted.

Respectfully,

Mike

Hi Jpeters, I am so sorry that you are going through this awful situation. I do not know anything about the neuro colon, so I can't really comment. But please know that we are here for you to talk, vent, yell...whatever you need to do to feel better. All of us have had our struggles with digestive disorders.

I can relate to your crippling pain after eating because that is what I felt when I had UC prior to surgery. When I was sick, I was only able to eat a few foods that did not cause as much pain. Those foods were: spinach (completely cooked), chicken, mashed potatoes, pasta with butter and cheese, scrambled eggs, toast, water ice, almond milk, and apple juice. Once in a while, I ate wonton soup, which was a treat and it provided lots of sodium. Yes, I hope one day that the doctors will be able to reverse my ostomy, but my chances are slim....I would need a miracle. I had my rectum removed because that was where the UC was, and it was completely destroyed by disease. Is there any chance that you could have TPN for supplemental nutrition? I had it for several months to help me maintain my weight. It was a surgical procedure to insert the IV, but it provided liquid food for me. Just a thought. Take care Jpeters, and I will pray that a cure comes to you soon and the doctors address all of these problems. LH

Oh J,

I am sorry things are not going right. I believe anyone who reads your post will wish to help you. I don't regret getting my ostomy because I didn't really have much of a choice. I had colon cancer and even after chemo and radiation, it grew into my lining so my surgery was more radical than expected. It is sad that you are in so much pain and hope your doctor can do something to relieve it.

Have you tried keeping a food journal to see if you can figure out what is making you bloated or does it have something to do with your neuro disorder? I can't imagine only having a liquid diet most of the time, and the suggestion of TPN sounds like a good idea to help with nutrition.

I don't know why you're having that much odor. I can only think of calling the manufacturer of your bag about the problem with the odor to see what they may suggest to help. I use Brava lubricant and odor control in my bag, and it helps. When I empty, I use "pure drop" (found at Walmart) in the toilet before I empty as well as rinse my bag with just plain water. I have used a small amount of mouthwash mixed with water to rinse, as well as hydrogen peroxide on occasion. Depending on what I have eaten depends on how well any of them work. I try to keep my bag in use for at least three days to save on supplies, but sometimes you just have to change to keep things the way you need them to be.

If you are irrigating, then you must have a sigmoid colostomy. I have the same but chose not to irrigate at this time, maybe someday.

What about finding an ostomy support site within your area? You could try looking on the United Ostomy Association for a site near you. Here is the link if you are interested http://www.ostomy.org/Home.html

Please hang in there and keep trying to get some answers!

My husband feels exactly the same way. He has bouts of severe depression about every 6-8 months and at times is suicidal. He says his life is over and he feels so angry at the surgeons and at the medical staff who failed to inform him of what the worst case scenario would look like. He had suffered from UC for a long time, had been treated successfully with an IV drug but then lost his insurance. When he got insurance again, the drug no longer worked and he was desperate. He opted to have the surgery which, due to multiple complications, nearly killed him. He is kind of a walking zombie, just going through the motions of life. I am so sorry for your anguish. I am curious as to if you didn't have the ongoing pain or concern over smelling badly, do you think you would be adjusting to having a colostomy? I wish so much that they would come up with new medical options. Take care and I hope you find the answers and help you need.

Words of Encouragement from Ostomy Advocates I Hollister

Hi Jpeters, I was thinking about your situation and how to possibly improve it. My thought was this...if the odor is coming from the mucus you are passing throughout the day, why not wear a panty shield or a larger pad. When the shield gets soiled, change it and adhere another fresh one. Those shields sometimes are lightly scented too. It may help. Also, I would bring wipes with me as a double check/cleanse. In addition, I would wash everything in a light bleach especially my undergarments just in case they are holding on to some odor. Lastly, I would find a nice, light scented cologne or body spray and use it after my shower. I would not use a lot, just a spritz or two. I hope that this helps some. Take care and keep posting. LH

Wow, thank you to everyone for the thoughtful replies. It's nice to meet all of you.

To clarify, I can only digest fruit/veggie juice. Very nutritious, and my blood work is still excellent, but it's really hard to get enough with only a liquid dinner. The diet creates very little stool odor, but what there is always comes through the bag like it isn't there. I get a very good fit and have zero leaks/skin irritation. Several WOCNs were stumped by this as well.

iMacG5, thanks for the tip about the neuro forum. So far no one on that forum has the same level of GI issue, but it's worth a thorough search.

LadyHope, I'm glad you don't still suffer from UC. I can't digest dairy or toast, but spinach juice is great. I had my rectum removed so no mucus issues. The smell is from the stoma. TPN is a creative idea, and worth considering if I become malnourished.

Mrs A, I've tried 9 wafers/bags from 4 manufacturers. There's always an odor. Yup, we both have sigmoids. Since you don't irrigate, are you comfortable after you eat? Can you still function? Do you eat in the day?

Dalai, all I want is to end the painful, crippling bloating. How are you and your husband doing? Are you still able to have fun sometimes?

Along with everyone else who responded....I too am so sorry you are going through such a difficult time. I was 15 when I had my ileostomy (due to 4 years of UC) and although I had a difficult time managing it at first....it turned out well. That was 50 years ago.....

I had my whole large intestine removed, so I don't have irrigation issues, but I do have severe odors at times. It's gotten worse over the years.

There are foods I just have to avoid, or change my pouch after eating....because I can "smell myself" coming and going. But others assure me that they don't smell anything. I can't believe that's possible...but it is. So make sure that others are REALLY smelling what you smell.

For a time, I used to get very severe stomach pains....felt like gas bloating as you described, but after going through another set of X-rays, the dr. noticed that I was "gulping air" swallowing air. I know it sounds simple, but a tranquilizer daily really did solve the ongoing problem. That was 42 years ago.

I've since discovered (from newer research) that certain foods are a trigger for people with autoimmune diseases (my two sons, and I have inflammatory bowel disease... and my daughter-in-law has MS). She put her whole family on a vegan diet.....and she's made me take a closer look at the foods I was eating. I've eliminated dairy from my diet, and no longer have issues of "the runs" and dehydration. I was never told to reduce or avoid red meat (no cholesterol problems) but since I have done so, my kidney function (which was deteriorating) returned to normal.

I know that you have your surgery for a different reason, but I'd try to work with a nutritionist, and restart your diet with very few foods/liquids, to see what agrees with you...and what doesn't. It's much like what they do with a baby who is ready to start solid foods. If doing IV feedings gives your system a rest for a while, that might be a good thing also.

If none of the above work for you.....and other advice doesn't work....I'd really suggest getting a second opinion.....or third, or as many as it takes to find an answer. I've had so many unpredictable complications through the years....and sometimes the most obvious solution was not as clear as it should have or could have been. You have to see the right dr. ask the right questions..... Sometimes, it's difficult to persevere...thinking that there's "no answer" or no solution. Don't give up......there is an answer out there.....just have to find it.

Best regards.....keep writing, and venting, and remember we're all here to support you when you need us.

Marsha

Hi J,

It's nice to meet you too!

I agree, after the first day there can be an odor, but it isn't so strong for me until day three or four, so I change the bag but not the flange unless I need to. For me, rinsing out the bag really helps, especially with the mouthwash. Then I do re-add some lubricant.

Yes, most of the time I am comfortable unless I ate something like cauliflower or cabbage because I know it gives me gas even if I take Beano before I eat it. I find it best if I eat small meals. I function just fine unless I overeat or eat something I shouldn't but love. I try to eat a small breakfast, it ends up more like a snack, a little more at lunch but not as much as I have at dinner because I'm home from work by then. If I'm hungry a few hours later, I'll have a light snack. Most of my friends say I stay slim because I don't eat as much as they do, but after explaining how things work for me, they understand.

Maybe smoothies would work well for you. Some folks also use protein powder in them to bulk them up, but I found ice cream sodas will do the trick too

Hello jpeters.

First of all thank you for sharing your problems with us as we can all relate and empathise with the feelings that go with this sort of 'crap'.

One of the interesting things I have found from reading posts is that even though we share similar experiences with surgery, the after-effects are often different for each of us, especially when it comes to thinking and coping with the day to day problems.  Before my ostomy I was chronically incontinent of faeces and eating tended to set things in 'motion'. Because of this, for years I fasted during the day and only ate when I got home in the evenings. Since the colostomy I've taken to eating a small amount mornings, midday and evenings and found that this has helped with avoiding bloating and some of the associated pain. The accumulation of wind seems to give me the most problems both with pain and smell when it finally releases itself. I manage this  by irrigating after my evening meal then I fold the irrigation sleeve and seal it so that it acts like a bag for the rest of the night. It always amazes me how much wind is generated as sometimes the bag expands like a balloon by the time morning comes. It is little wonder that this same wind causes pain when trapped inside the body!  In the morning I bath, clean-up and insert a coloplast plug for during the day. These plugs are designed to let the wind pass out without resriction so there is very little build-up of wind. Also they have a filter which neutralises any smell. The plugs have the added advantage of stopping the sound of wind passing out of the body by way of a fart - also reducing consequent potential embarrassment.  This means that I can get on with my life during the day, eat whatever I like, and hardly notice that I have a stoma until the evening routine starts again. I should mention that I am vegetarian and do not like foods containing 'fat' so when I say that I can eat what I like this does not include meat or dairy products.

After years of experimentation with diet, ostomy gear, gadgets etc I have settled to a routine that suits me best because it gives me the best quality of life under the circumstances.  In practical terms, what works for me may not work for you. However, the principles of experimentation and seeking your own solutions to your own particular problems would seem to hold true for most of us.  

I sincerely hope that you too will eventually find ways of managing your circumstances so that you lessen the negative feelings that often accompany frustation. 

Best wishes  

Bill

For gas, have you tried Gas-X? It is OTC and has helped me.

I had a colostomy followed by an ileostomy for diverticulitis/stricture/abscess. I had problems finding bags that would actually stick for more than a few hours, so I didn't go out much. I had horrible skin issues and worked from home. The bags with the charcoal filters only work for 24 hours, until your output reduces their use, and I actually got up to wearing them for 5 days, so the filters were worthless.

When you say it stinks, where is the odor coming from? Maybe try a bag without a vent? That should be airtight except for emptying it. Usually when I emptied mine, I squirted the stuff my ostomy nurse gave me. I got a reversal a few months ago, and the only issue is that sometimes my output through my rectum feels like industrial acid. But as they say,

The colostomy was better than the alternative of becoming toxic and dying.

The ileostomy was better than the alternative of not being able to have a reversal.

The reversal was better than the alternative of having to wear a bag, which was becoming untenable due to major skin issues.

Hi Marsha,

I only go out in public when I've eaten nothing that day, irrigated, showered, and changed the wafer/bag. That's the most I can minimize it, but people always react to the smell regardless. They sniff angrily, touch their noses, sometimes glare. I have no friends/family left, but one old friend I hadn't seen in years ran into me and said "you smell".

The smell is coming from the ostomy. The more pressure on it, the more smell. Filtered bags haven't helped. I've tested negative for autoimmune, SIBO, and C-diff. Seems the issue is that the bags aren't air-tight, even the filterless ones. Will have to keep experimenting.

The bloating seems like a mechanical problem.. Like my body just can't handle having solid wastes build up in the abdomen, until it has to heave them out of the stomach. Never had this issue when waste was stored down in the rectum, comfortably out of the way. Tried several elimination diets. The only thing that really helps is sticking to soft, liquified plants that digest easily.

Thanks for suggesting the tranquilizer. It's an interesting idea. I'll ask my GI doc about it.

Mrs A,

Protein powder is a life-saver on a fruit/veggie diet. Good suggestion. And nice job staying thin. I'm thin too and I find it considerably reduces pressure on the ostomy/abdomen.

Bill,

Thanks for the detailed feedback. We seem to have opposite results, as even small meals in the day make the problem much worse. I rarely get ballooning in the bag. You seem to mainly have gas issues, while I can't seem to handle solids building up in the abdomen. Have tried a routine similar to your evening irrigation, but it's too uncomfortable during the day. Best wishes for your quality of life.

Mary Ann,

Tried Gas-X without much improvement. Chlorofresh helps some, but my diet is already low-odor, so it's hard to reduce odor much further. The issue is that even mild stool odor is very offensive to people. It just always comes through the bag, even filterless ones. I don't know why they work for you and other people. I'd swear the bags are just junk.

Congratulations on your reversal. You must be thrilled to be living without the bag.

Just curious, what job did you do from home? Were you self-employed or did you arrange it with your employer?

I work in IT supporting an electronic medical record in the US Midwest. My employer had instituted a work-at-home policy prior to my GI issues. The mantra was, "As long as you got your work done, it did not matter where you did it from: coffee shop, middle of the night, just call into the live meetings the project manager scheduled." It is called ROWE. Several organizations in MN are adapting it, including the state of MN. My boss is incredibly supportive, and it makes me love working there. Productivity at work is up, as is satisfaction and retention. Most of my team goes into the office every other month, but some people go in every day, different personality types.

Yes, it is fantastic to get the bag off. My skin had become so irritated that the skin meds were not working very well, and I was miserable. That, however, was not nearly as bad as having the bag come off every few hours (which made the skin problems much worse). I'm glad I finally found a solution to that.

Just irrigated for 90 minutes and I'm still horribly bloated and writhing with discomfort. I'm going to have to irrigate again later this morning. Sorry to be a downer, but I'd rather be dead than live like this...

Hi J, I have an ileo. And if I don't eat, I get real gassy. So what I do is snack on unsalted soda crackers or, for a change of pace, maybe Ritz crackers. I have tried Beano and that didn't help, but the snacking seems to work for me.

Hi Jpeters, how are you doing and feeling? Has the bloating and pain reduced some? I was thinking about the odor that you are experiencing from the pouch and stoma and wondered, do you use an ostomy deodorant? It may help with the odor. I use either M9 by Hollister, Na'scent by NB products, or Safe and Simple. All three products seem to work pretty well. I tried some others but they were not so good. Some made the situation more stinky. I threw one popular brand right in the trash. Goodbye... I did not need something that made matters worse. I also change my pouch every day and some deodorant to the fresh pouch. It seems after sleeping my pouch really becomes soiled so the most I get out of pouch wear is one day, maybe two if I am lucky. I agree with everyone the filters do not hold up. Again one day, maybe two days at the most with my filtered bags. Take care Jpeters and I hope that things are getting better. LH

Thanks Ron, but eating anything causes excruciating bloating. Even a piece of toast for breakfast is crippling. This ostomy is totally unlivable. I'm going to work really hard to become independently wealthy in the next few years, get a reversal, and probably spend the rest of my life housebound crapping into a diaper 25x/day. It'd be better than the way I'm living now.

This ostomy was the absolute worst mistake I ever made. It's the worst thing that can happen to a person, and it completely destroyed my life. Crapping 15x/day is so, so much better. Going back to that would be heaven.

Hi LadyHope, it's nice to hear from you. I've tried Brava, Adapt, M9, and Safe Simple. They haven't helped much, but thank you for the suggestions. I only leave the house after irrigating, showering, and changing the wafer/pouch. I've tried filterless bags, but people always react to the smell. Even hobos have held their noses around me - no exaggeration.

At this point, I don't even care about smelling normal. I got the ostomy so I could start living, and instead, it ruined my life. All I want is to not be tortured by it anymore. I'm on day 683 and I can't take much more. Even though I got a colectomy, I'm going to try for a reversal. I'd rather be incontinent/housebound than start every day with excruciating 90 min irrigations, followed by round the clock starvation/intense discomfort.

Take care and drop me a line anytime you'd like to chat. It's been nice talking with you.

Hi J.  I just read your stuff again and it depresses the heck out of me.  You know how much we want to make things better for you and I/we feel so helpless.  Odor can permeate some plastics and I experienced that with a bad batch once.  Convatec recognized it and replaced the bags immediately.  The pain can be part of our lives at different levels and for varying durations and we handle it or don't in whatever way we need to.  I thought an ostomy would destroy my life, if not physically, certainly psychologically.  After cancer surgery I was a 20-a-day or so crapper and was willing to live with that rather than hang a bag on my belly.  My butt didn't cooperate and there wasn't enough morphine on the planet to allow me a minute of comfort and so, the stoma.  For me, that was a new beginning and for you, it's hell.  I feel guilty in that I know there must be something you can do and I don't know what it is.  Please forgive me for even suggesting what you probably already did, but can't the Convatec or Hollister people offer anything relative to the odor?  Isn't there a doctor with enough compassion, smarts or professionalism to listen to you and offer some help?  You've got to be one of the strongest people alive to put up with this crap on a daily basis but, just know, there's got to be help somewhere.  Just wish I could point you in the right direction.

Please stay in touch.

Mike

Hi Mike, I am sorry to be such a downer. I'm really glad your ostomy turned out better than mine, and saved you from a life in the bathroom. That cancer must've really been hell. I've tried Hollister, Convatec, Coloplast, and Cymed wafers - none of them ever leak but there's always an odor. I talked to the surgeon about it and he didn't want to hear it. Thinks I impulsively got the ostomy and am now just waffling. I've seen a GI doc and still test negative on all the GI conditions (Crohn's, UC, SIBO, C-Diff, etc). Have met some great WOCNs that really know their stuff, but they can't find anything wrong with the bag fit. I read through the neurology forum you recommended and did find a couple of people with ostomies who somehow haven't had all the pain/bloating. Don't know why.

I'm going to bite the bullet and drive to the UOAA convention in St Louis this year. They'll hate me for smelling like crap, but I really need to talk to people who've had reversals. To find out what it's really like.

Hi Jpeters, that is great news that you will be attending the UOAA conference. I went two years ago when I was just a newbie and picked up some useful ostomy tips from the experts. There will be many nurses and ostomates to talk with and possibly help. Everyone was so nice. I had a great time and started to feel like me again. As a matter of fact, my husband and I are planning on attending once again and are thinking of driving out. It will be nice to meet you. I don't know much about reversals as I am not a candidate.... maybe the BCIR, but more surgery overall really scares me. Anyway, take care and keep posting. I keep praying that your situation completely resolves and you start to feel better. LH

So J, I’m betting you’re going to find some answers because you’re not giving up. I think you’ll pursue every avenue including body chemistry relative to plastic permeation. Along the way you might be helping other folks. I think most of us here will keep thinking of your situation and looking for answers. I certainly will.
Good luck to you and please keep us posted.
Mike

Maybe this website will be of some use. https://www.stomacloak.com/

Hi LadyHope, it'll be nice to meet you and your husband at the conference. I'm going to fast for several days leading up to it, and I will really try to smell normal.

Absolutely Mike. You're raising valid concerns about plastic bags (only 1mm thick) vs biochemistry. It's been good talking to you, and I appreciate your feedback. Thank you and I hope you stay well too.

Thanks Mrs. A. Just ordered a Stoma Cloak. Good idea.

Hi Jpeters, thanks so much for the response. This may sound like a silly response but maybe if you do your regular routine and come to the conference and there is a problem, the wound care nurses could help you. They may know immediately why you have the odor, awful abdominal pain and recommend something on the spot. And since the conference is several days, if one suggestion does not work, they may have many more. Plus you will be there - one on one with the experts. I was going to email my GI surgeon and ask him what are his thoughts about your situation but I really do not have enough info to provide. His name is Dr. Benjamin Phillips and he is a brilliant surgeon and very nice person. He is understanding and helped me tremendously with this journey. He is based out of Thomas Jefferson University Hospital in Philadelphia, PA. If you have a chance, google him. Take care Jpeters. LH

Hi LadyHope. Thank you very much for your thoughtful recommendations. I really can't show up smelling like crap, so I'll need to fast. But I will absolutely work with the WOCNs as much as time permits, and am bringing several wafers/bags. At this point, I just want to eliminate the pain/bloating, and need a reversal. It'll be very interesting to speak with Dr. Phillips. He gets excellent reviews from patients. Thank you again for the tip.

Hi Jpeters, I am so glad that you will be speaking with Dr. Phillips. Along with being a great physician, he is a kind doctor. I appreciated the gentleness during my illness as the entire experience was a nightmare and I was awake. I believe that my situation began with eating a bad hamburger at a summer picnic and then the autoimmune system kicked in... here I am. Quick question... How will your reversal work? Are you looking at a J-pouch or I believe it is called a straight shot... a direct reconnect? Yes, I agree with you... there has to be a reason for all of this pain and bloating. But what is it? I will say a prayer that Dr. Phillips knows the reason why and can help you. Take care and have a nice weekend. LH

Good question, LadyHope. For whatever reason, my body just can't handle transporting solid waste through the stomach. The anatomy was never designed to store or excrete waste there, and I find it crippling and intensely painful. The whole surgery just feels like Dark Ages medicine - no offense to anyone. All I had was a disorder of the sacral nerves - a small peripheral nerve cluster - leading to constant BMs. Yet all the doctors knew how to do was carve out the affected organ. It's like when Civil War doctors would saw off a patient's leg because they couldn't treat simple infections. Half their patients died from pain during the procedure, and the other half were crippled. It's insane.

The reconnect would be a straight shot, reconnecting the sigmoid colon to the sphincter. The question is whether there's enough of the anus left from the colectomy - that surgery was the real mistake. Without it, they could do a simple reconnect and I could return to 15 daily BMs, which isn't a bad life at all. Now there may not even be enough of the anus left to reconnect, but I have to try.

Hope you enjoyed your weekend. Take care, JP

This'll be my last post on the thread, but people are still free to comment.

I'm a self-employed engineer. I co-designed and built a machine with one other person that impressed our customer so much it has the attention of their company president. The company is worth 2 billion. The president of a 2 billion aerospace company knows who I am and what I made. This is huge for us and my partners are taking the day off to celebrate. I'm sitting here after the 2nd irrigation of the day so sick from the ostomy I wish I was dead.

It just goes to show, no matter what you accomplish, the ostomy will ruin everything. Literally nothing matters anymore besides sh*tting into a bag. 691 days of this, and I'll probably never get my life back. Sorry to be so grim. I won't write anymore, but I felt the need to be honest. I'm so sick of Hollister ads showing people windsurfing. Wonder if the people in them even have ostomies...

Sorry JP.  Do what you need to do for now but I'm not giving up on you.

Later,

Mike