Bette quality of life after surgery?

Hmm. Well, firstly it might have been the vegetable soup which smelled bad - some of these soups/meal replacement drinks both taste and smell rank. Secondly, if anyone is used to bad smells, it's hospital nurses. I've seen them deal with all sorts of things without blinking an eye which would have me gagging. I'd be surprised if they were really covering their noses.

To be 100% sure you didn't smell, I'd have to meet you but I would be really surprised if you did. I dunno, I feel bad for you because I think you are living in a prison but it's one that's mostly your own creation. I wish you could accept your colostomy, not because ostomies are the best thing ever, but because you are stuck with it (I'm assuming a reversal isn't a possibility?).

I'll tentatively hazard one last guess, and that is that starving yourself the way you are is screwing with you physically and mentally. If you could eat more (and solid food at that), you'd probably feel a whole lot better :-/

Hi NiceCupOfTea. You seem like a nice person and you're offering good psychology info. I understand that your sister-in-law had OCD and mistakenly believed that she smelled. But some people actually do.

Unless I hallucinated what the WOCN said, and what the teens said last night, and the Asian guy touching his nose and glaring on Friday, and the odor every morning, I do smell. Its a shame that you aren't local, because you'd get the situation in 30 seconds if we met.

I get one nightly liquid meal. No food in the day, because once I eat my stomach swells up, I can't sit in a chair, and can't think straight from the pain. But I work 60 hours/week in engineering, and am quite rational.

I'm sincerely glad you don't have to live like me and that your ileo worked correctly. Really. Its great that you can live with people, smell normal, and eat food. I hope Entyvio works for you and that you can forget your bowels. You guys don't do Thanksgiving, but I hope you have a nice family Christmas.

Post Edited (JS44) : 10/30/2016 3:58:40 PM (GMT-6)

Thanks very much for the info. TIES looks promising, and I'll certainly keep a close eye on them. They've already got CE approval; hopefully will soon also get FDA approval for the US.

Right, nothing to eat/drink except water until dinner at 7. You can get used to it if necessary. You just have to conserve energy and learn to work at a lower energy level. But it does feel weird to be hungry all the time in a first world country.

Thanks for the Holiday best wishes.

clo2014 said...


Questions, do you wear a bag after you irrigate to try to cut down on the smell? How long ago was your surgery? Is the pain from eating in your colon or stomach? Do you have a support group of any kind? Because I hear a very isolated person that is asking for help. That's when you don't need to be alone with your thoughts. It's nice to be able to bounce ideas off of one another. Plus every once in a while you might come across someone in a forum that is able to help because they have the same issue

Hi Clo, its very nice to meet you. I always wear a bag after irrigation to catch any remaining liquid, which usually comes out within 30 min. Hard to localize the pain. The whole abdomen swells up. Difficult to walk. Heavy stomach. Neck hurts when sitting. Until irrigation. Then am a walking skeleton again. Also intense pain when trying to run, causing me to double over. Basically the whole abdomen is shot.

No support group. People universally hate someone who smells.

clo2014 said...


Finally, I understand the smell thing. I stink when I take off my bag, even after I shower I can still smell myself. If I let the stoma "breathe" for a few hours without anything on it...the smell goes away... Perhaps I am just very lucky it is like that. If I had to smell myself when I was stinky..well I would cranky.

Wow, never heard of anyone doing that. Very interesting that you came up with that.

Do you stay in the bathroom for several hours? Or do you leave the bathroom and walk around with no bag on?

You didn't mention what type of colostomy you have. Is it sigmoid? Do you irrigate? Is that how you go bagless?

clo2014 said...
Plus every once in a while you might come across someone in a forum that is able to help because they have the same issue, know someone who had the issue, or they just say something that makes you view the issue in a different way and it helps you find another road towards a solution.

Thank you. That's very sensible. Nothing yet, but hopefully in the future.

Also, I hope you're feeling well and that the meds keep you in remission. You've had a much rougher time than me, and I hope the fistulas and really bad stuff is behind you.

Post Edited (JS44) : 11/12/2016 12:58:10 PM (GMT-7)

JS44,

Sorry for the delay. Life got away from me for awhile. Thanks for the positive thoughts. I needed them this week.

My stricture was in the sigmoid. I do not irrigate at the moment. We are waiting for my stoma and incision to heal. I use to just remove my bag and walk around with regular underwear on. I could feel food moving thru and could tell when it got close to that time..then I'd hobble to the bathroom and wait about 10 minutes. Walla.... (But I am retired so it made it easier- you can't do this at work.) Lately I have started placing a baby diaper over my stoma yet under the underwear. I started to have nightmares about having an accident. This was the best way to get air to the skin separation around my stoma. It helped it heal faster. (I know..call me crazy) Plus my stoma has a schedule. Early morning before 8 am, afternoon about 3 and sometimes after 8 pm. BUT there are those nasty surprises when I have to sprint to the bathroom. Because of the schedule I just walk around at home in regular clothes with the diaper justplaced in my underwear and go about my business. Now if I have a bag on I will use a two piece and the flange stays on for about 5 days. (The skin comes off when I remove appliances-but we are working on that) AND I can still let it air out. I am a clean freak so its clean clean while airing, once dirty it stays in the bag.lol.

But the smell...I can smell myself. It drives me crazy. It is quickly driving my really blunt honest friends crazy. I keep asking them how they can not smell crap. I have noticed that if I clean everything up and air out it is not as strong...but I swear I can smell it. So its not the same challenge you face. I have started to think I am crazy and paranoid about the smell....but am still researching and considering diet changes and/or those pills that supposedly help defeat smell internally.

On your pain? Does it happen after you eat/drink, before, during or after your run? Do you have any active disease or inflammation? Just trying to figure it out... I sometimes get pain and severe bloating when I have a mini setback caused by nerves or anxiety. It triggers my crohns, inflammetion occurs and then the pain. (Sorry my stupid smart phone keeps changing things) Sometimes food or spices will do it. Black pepper...aaaagh...love it but not good for my tummy right now...and I am scared to try any other peppers...

Life is an adventure. It has multiple opportunities to study ourselves and our environment and learn from them. We can decide whether we want to be a positive or negative person and influence. It's challenging. That's why its important to have support...whether that's online or in person. So remember--when you are tired, frustrated, happy or just feel the need to vent--we are here. We might give you a hard time or tease you but we are here...

I will keep researching the smell issue and post if I find anything that works for me. Hopefully you will also. I hope your pain resolves itself or we can help you figure it out. Talk to you later....

Clo

Clo and js, do you both have colostomies? Reading through the posts it sounds that way. I do know odor is more of an issue with colostomies than ileostomies. One of my hospital stays my roommate had a colostomy and had a much bigger problem with odor than I did. I think it has to do with the bacteria and colostomies still have a colon and more stool like output that smells pretty much like poop.

With both types eating fermented foods like yogurt and buttermilk can really help reduce odor.

notsosicklygirl said...
What type of products do you use?

Whenever I go out in public I eat nothing that day, irrigate for 60-90 min, shower, and change the wafer/bag. People always react to the smell.

I've worn 6 wafers and 8 bags from Hollister, Coloplast, Convatech and Cymed. Always melt half an Eakin seal into the belly button, to ensure proper fit on that side. Always use a closed-end pouch. Tried mechanical & adhesive coupling. Tried duct-taping over the filter.

notsosicklygirl said...
people have a variety of odors... not to discount your issue - but maybe smells aren't so uncommon.

Unfortunately, the US is becoming a very ill and overweight country. 1/3 of Americans have IBS and 69% are obese or severely overweight. That might account for odors, even when people shower regularly.

notsosicklygirl said...
I know we had another member here who said she always smelled - so you're certainly not the first.

Do you know what her screen name is? It'd be interesting to see if she solved her problem.

cupcakespinkgal said...
Clo and js, do you both have colostomies?

Yup, I've got a sigmoid. That's true, the ileo could smell way less bad than the colo. That's a great point. Honestly, I really don't want more surgery. But thank you for a very creative suggestion.

Also, will try to locate buttermilk in the store, thanks.

Thanks.

Forgot to put in previous post...

When I had the stricture and I ate food, seconds after eating I would start to feel bloated, then nauseaus, then the pain would start and then you could watch my abdominal area swell. Once I had a MRI the doctors could tell that my colon would dilate once the food hit the stomach. Eventually my colon would not revert to its normal size. There was some discussion on how the stricture exasperated the colon or if the colon exasperated the stricture. Regardless there was narrowing and it caused issues.

I could drink ensure or a protein drink and found the symptoms were not as bad.

Also..for the smell....have cut out black pepper and garlic it has helped some. When I am wearing a bag I use M9 so the stool smell is not as awful. Do your stool smell really bad also?

Please let us know how it goes.

Clo

Clo

Js44,

I hope that if others brainstorm we will find some ideas that might help you. Honestly, I am stumped right now but please let me ponder on this.

Adhesions don't always show up in xrays..or so my DR. Said. That is why I keep having CT and MRI scans...and even those are iffy. Have you gone in for a colonscopy in the last six months to year? Does your DR. have any suggestions at all?

I just want to help you find anything that will work for you.... Will think snd get back on tomorrow. I am so sorry you are going thru this!!
Clo.