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Living with a colostomy

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Posted 8/9/2012 1:05 PM (GMT 0)

Hi Guys,

 

For the past 2 years I've been living with tenesmus (always feeling like I need to go but can't) and mixed with urgency/diarhea. I've done all the test you can imagine from 2 colonoscopies, MRI, CT Scan etc.. Nothing was ever found. I've taken every supplement from herbal to anti spasmodic drug etc.. Most of them made me feel worst.

 

Living with the feeling like your going to have an accident in your pants all the time is no fun. I can barely work or do anything on the week ends. I'm pretty much house bound and I feel like my life is not worth living. Even do I go out I don't enjoy myself.

 

I've been doing a lot of research on colostomy and I would 100% rather live with one than to no be able to live my life freely. Their still a few things that I haven’t tried but my personality is that I need to know what's ahead me.

 

I know some people might think this is very drastic but I won't be able to live like this forever. Everyday is a struggle. I'm not even sure if I would be able to find a doctor willing to do this.

 

How is is living with this every day? How often do you empty your bag? It seems some people have to empty it at night, does everyone have this or is it the selective few. It's hard to find regular information on the message boards since most of the topics of problems people have.

 

Thanks,

Posted 8/9/2012 2:45 PM (GMT 0)
Welcome to the forum.

I'm very new to colostomy and I hate mine because I was sort of normal before it, but I'm in the far minority because most others here were miserable before their ostomies. I had to have this done suddenly and unexpectedly because it was life or death. I didn't have any choice because this was done to me while I was unconscious.

I feel housebound. I can no longer do the things that made me happy previously, things like swimming, visiting anyone or shopping for more than a very short time. My doctors don't let me swim, although some ostomites are allowed to do it. When my gut decides it's time to move, usually once a day, I am in pain, nausea and miserable for 2 to 3 hours. Then I have to empty my bag 2 to 3 times in the space of a few minutes. Again, that's not everyone's experience. My colostomy site hurts all the time, sometimes only a little, but often a lot, enough for Rx pain meds. I am trying lots of solutions, but I can't stand the smell. It makes a lot of gas noise too. I am embarassed by this thing and won't let my husband see it. I have no clothes that fit or are comfortable. Because it's right where I prefer to wear a waistband, the least pressure hurts and blocks the stoma.

I understand you are miserable now, but I would still recommend trying everything you can before getting something permanent. Get second and third professional opinions. I understand you have already done a lot of research. If you still find a colostomy or an iliostomy is your best hope for a more normal life, go for it! I have some hope of a reversal, but not anytime soon. You might ask if you can get something that could be reversed if it ends up worse than without it.

I'm only saying don't rush into any decision based on a small pool of information, especially mine.
Posted 8/9/2012 3:38 PM (GMT 0)
Are you going to have a colostomy or an ileosotmy? There is a difference in how you handle those and emptying and such.
I have an ileo, I empty mine probably 5 or 6 times a day, sometimes more depending on what I eat. I probably wouldn't have to empty at night but I always get up to pee, so I do it anyway.
I can do everything I did before, I can eat anything I want, and wear my regular clothes.
Men seem to have a little more trouble with clothing than women, I think its because their stomas are higher. The most important thing is that you get a good surgeon and a good stoma.
Alcie, why did your drs tell you you can't swim? How long has it been since your surgery?
Posted 8/9/2012 3:53 PM (GMT 0)
There is additional info regarding colostomies on the UOAA board area.

If it is in fact a colostomy and not ileostomy some people (providing you are a candidate for it) irrigate. Since a colostomy differs from an ileostomy, the irrigation technique does take about an hour each day of your time from what I understand and then you don't have to worry about output until you irrigate the following day.

I am no expert on the subject but it is something you may also want to check into and maybe this would make a colostomy overall an easier choice to make or come to terms with. Good Luck.
Posted 8/9/2012 6:27 PM (GMT 0)
Another item worth mentioning is open surgery or laproscopic. Mine was lap surg. Much better! Faster healing, less pain, no ugly scar. I had a second surgery a week later, open this time, to remove a blockage in small intestine. Scar from navel to pubis, closed with staples which left me looking like I have a series of belly buttons, so ugly I plan to have scar revision surgery. My 4 C-section surgeries, each in same place, closed with 1 long suture from underneath surface is nearly invisible by comparison! Surgeons nowdays only use staples because they're faster. I used to have a job doing surgery on rats and I did a better job of closing.

Summerstorm - It was the hospital ostomy nurse who said no swimming ever. Surgeon only sympathized when I complained about missing my only sport and exercise. Surgery was only 2 1/2 months ago. I see surgeon in a week and a half.

I was told by local nurse irrigation is not encouraged anymore. I think there are some people in the forum who do it though. Try using the search box at the top of the page. My food usually comes through colostomy in evening every day, all at once. Actually, over the course of 2-3 hours.

UOAA http://www.ostomy.org/ Information is not very well organized, but at least there is some there, in between the ads.
Posted 8/9/2012 11:17 PM (GMT 0)
It would a colostomy.

I really like how you guys are not negative about the situation.

You can do a colostomy with a laproscopic surgery? This would be a lot less invasive.

Keep the information coming. I love learning!

Post Edited (Pierre Gallant) : 8/9/2012 5:20:35 PM (GMT-6)

Posted 8/10/2012 12:34 AM (GMT 0)
I also have an ileostomy because of Crohn's disease. I chose a permanent one. I don't think it's drastic of you to do that...your symptoms sound horrible.

You can do anything with an ostomy. You can definitely swim, you can exercise (once you're healed from surgery), and you can have it done laproscopically. I had mine done that way, and they also sewed up my rectum. I was just a counselor at a camp for kids with ostomies, and I can tell you...we all went swimming, we did things like rock climbing, aerobics, figure skating, cycling, karate, etc.

Alcie, you may want to do some research on other ostomy nurses. I went swimming less than a month after surgery. If your incision is healed you should be able to swim. You can shower and get your wafer wet too. Why are you housebound? I do way more now than I ever did before my surgery. I can keep up with anyone without an ostomy.
Posted 8/10/2012 3:31 AM (GMT 0)
Alcie I agree with what 80s chick said you need to ask your nurse why you should never swim. Unless it has something to do with an incision that's still open it shouldn't matter. I just got home from Jamaica and I was on water slides in the middle of the ocean there! I even rode on a dolphin once! No problem with my bag at all!
Only being two and half months out, with your previous surgeries, your pain is probably just healing, and you probably still have some swelling.

Pierre they do them lapro, I had an open surgery, that's just what my surgeon chose. He said it was how he learned and that was how he was most comfortable and that there was always a chance it would turn into open surgery anyway. I think the difference is lapro is less likely to form adhesions and the healing time is supposed to be shorter. But that has a lot more to do with your health going into surgery I think. If you don't already I suggest core and back strengthening exercises before the surgery. It will make recovery easier.
Posted 8/10/2012 10:45 AM (GMT 0)
Welcome, Pierre. I think your life would improve drastically by having surgery. I've had an ostomy for 6 years, and it has given me my life back. Before surgery, I had Crohn's for 7 years, which caused me to have diarrhea 20+ times a day. It was miserable! sad

Now, I only go to the bathroom when I have to pee and empty the pouch at the same time. I can work full time, go to the gym, swim, eat anything I want, travel... you name it... life is good! :-) The pouch is flat against my stomach and is hidden under my clothes, so nobody can tell that I have one. Honestly, I even forget that it's there!

Please feel free to ask any questions you may have. Everyone here is really helpful!

Cecilia
Posted 8/10/2012 11:03 AM (GMT 0)
You guys are great!

Emptying the pouch doesnt seem to be that horrible. It can't be worst than going to the bathroom 10 times a day.

I wonder if anyone on this board ever had a colostomy because of IBS?
Posted 8/10/2012 11:11 AM (GMT 0)
Emptying the pouch is so easy. Most of them have a velcro closure, so you just sit down on the loo, un-velcro the end, and let gravity do it's thing. You wipe the end off with toilet paper, and re-velcro it. That's it! :-)

I would think that people with IBS would benefit from an ostomy. My mother-in-law suffers from IBS, and if she wasn't 85 years old, I would suggest it!
Posted 8/10/2012 11:23 AM (GMT 0)
Emptying is NOT A BIG DEAL! I usually do it so fast that if I'm in a public restroom with a friend, I get done around the same time as they do and they're just peeing. I usually empty like every 4 hours-ish. Most people just empty whenever they have to pee.

i agree that people with IBS could benefit from an ostomy. However, I think most doctors wouldn't recommend surgery unless there are obvious markers or physical problems.
Posted 8/10/2012 11:27 AM (GMT 0)
I think that's what's going to be my problem. Trying to convince doctors to do it. But after trying every single thing with no relief I think it might be easier to convince them.
Posted 8/10/2012 11:54 AM (GMT 0)

Alcie said...

I feel housebound. I can no longer do the things that made me happy previously, things like swimming, visiting anyone or shopping for more than a very short time.

Why won't they let you swim? Unless you have an open incision, there's probably no reason you can't go swimming. As for visiting anyone or going shopping, if you need to empty, just go to the loo like everyone else does :)

> I am trying lots of solutions, but I can't stand the smell.

Try a few drops of 3% hydrogen peroxide in your bag every time you empty. Next time you empty, there should be no smell. You can find it in the first aid section of your local supermarket (do not get anything stronger than 3% though). Medical stores also carry a variety of ostomy deodorisers if that doesn't work for you but the HP is the cheapest solution.

>It makes a lot of gas noise too.

It won't always be like this. As time goes on, the noise will become less and less.

>I am embarassed by this thing and won't let my husband see it.

Unfortunately, this is one thing only you can work on. Has your hubby ever said anything bad about it?

>I have no clothes that fit or are comfortable. Because it's right where I prefer to wear a waistband, the least pressure hurts and blocks the stoma.

You may have to modify your clothing, ie waistband preference, a little to accomodate your stoma. I feel as though you're putting up barriers for yourself unnecessarily. Experiment with different styles of clothing. I'm sure you'll find some really nice clothes that look good and won't bother your stoma if you try hard enough :)
Posted 8/10/2012 8:05 PM (GMT 0)
I want to add something about your husband, I seriously doubt he cares, but there is no reason he has to see it anyway! I have a belly band (like you wear when you are pregnant) and I put it over there so he doesn't see it.
Posted 8/10/2012 8:23 PM (GMT 0)
Pierre - My colostomy was done laproscopically. Not all general surgeons are trained to do lap, so you have to ask. Lap surgery is a whole lot better than open for healing and pain.

I don't have Chron's or anything, just had a ruptured diverticulum, so my movements are the same as they were before, once or at most, twice a day. You should ask an expert if you will have the same luck and whether it would make a difference having a colostomy or an iliostomy. If the part of the gut that is having the problem is left in the system, I would expect it to act as it does now.

80's Chick. I believe you, that I should be able to swim. I shower with the bag off, also with the wafer off when it's changing time. I think the hospital ostomy nurse was too green to know any better. By the time I see my doctor in a little over a week it will be time to close the pool, so it's too late to worry about it. Medicare only allowed one ostomy nurse visit. I'm expecting you are right about the pain lessening too.

Shaz, You're right. I am my own biggest problem. My hubby doesn't say anything about the ostomy. I am encouraged that others in the forum have no problem with their spouses. It's not hubby's fault, it's just how bad I feel about it myself.
Posted 8/10/2012 11:00 PM (GMT 0)
     Pierre, have you tried Immodium?  I know you shouldn't take it habitually, but having surgery is kind of drastic if no bowel disease is present.  That is my own opinion.  I realize you are very uncomfortable feeling like this, been there having suffered with ulcerative proctitis for twelve years prior to my surgery.

     I had a total colectomy with end ileostomy and it was an open surgery.  Having an ileo does not stop me from swimming or doing anything else I enjoy.  I empty my bag about four times a day and if I happen to wake up to urinate during the night, I will empty just for good measure.

     I was 63 yrs old at time of surgery.  My reason for having the operation is that I had become prednisone dependent and the drugs I tried (6MP, Remicade and then Humira) had no effect.  I had portapots stationed throughout my home and I live in a rancher.  We even had one smack dab in the living room area of our RV because if my husband happened to be on the hopper I wouldn't be able to "hold it in."

     Living with an ileo is far better than existing with ulcerative proctitis, but the operation is NOT a walk in the park.  So, I would suggest trying to find a GI doctor who just may be able to help you find relief.  However, if you feel you are at the end of the line in dealing with this, then find a good colorectal surgeon with LOTS of experience in these types of surgery.

     The best of luck to you!

Posted 8/10/2012 11:32 PM (GMT 0)
Alcie (don't want to hijack this thread...)
The Phoenix magazine a few issues back had a great article having to do with swimming for ostomates.

I wonder if you can google it or get access to it on the UOAA site. We subscribe to the magazine and I have it somewhere.
Posted 8/10/2012 11:42 PM (GMT 0)
Christine,

Immodium doesnt help me. If I have diarrhea or not I still feel this way. I've tried a lot of medication without any relief. I still have a few thing to try before going this root but I just wanted to get informatiom on it.

I live in Canada. That might make it harder.
Posted 8/11/2012 2:22 AM (GMT 0)
Pierre -
Have you tried colestipol or one of the similar meds? It's available in packets of granules so you can use the amount you need. Don't get the large pills, make sure script says granules! It's not absorbed by the body. It's also used for lowering cholesterol.
Posted 8/14/2012 11:09 PM (GMT 0)
Another question that I would have is did any of you guys with crohns have any problem with SIBO before the colostomy or after?
Posted 8/15/2012 4:25 PM (GMT 0)
DO IT , DO IT ,DO IT
http://myostomyconfidence.webs.com/
I WAS TRYING TO ADD ON TO MY WEBSITE ENDING UP deleting a lot of stuff :( BUT THATS OKAE ....
having a ostomy bag is the best thing ever i now have mines off. I wont lie there were some tough times but overall it is worth it and i at one point considering keeping my bag because life was great i was satisfied with how i had to live and i wasnt sure about gettin the next surgery the reversal ..i thought for what im doing GREAT already ...but i wanted to say this because i rember that feeling of being unsure this fourm can only tell you what to expect but when you do get the surgery (YESSSS because its a lifechanger) all of these this happens and that happens will catch you off gaurd because you are the one experincing it for that moment.. I hope you check my website out because i have pictures from the surgery and stuff i gotta get a picture up there of me now CUS I LOOK GOOOD ... i lost so much weight for the better im lovin it and you should to :) hope this helps with our dessicion making
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