Seeking Advice on Living with a Colostomy Bag

Hi there,

I am quite new to this site and still a bit unsure how to go about things but im giving it a go!



Im just wondering if there is anyone out there who has a bag because of rectal problems? I have a colostomy, since may this year however it acts like an iliostomy lots and lots of output. I have an anterior anal fissure that was caused by haemmoroid surgery 2 years ago, it has not healed dispite many many operations, procedures, treatments ect. The idea behind the colostomy was to divert and let it heal but as yet that hasnt worked! My most recent surgery was an advancement flap 5 weeks ago....(agony!) i have not had any improvement yet.



I am just loking for anyone out there who is or has been through a similar experience. As far as i can gather from my consultant if this dosent work then there isnt much else that can be done except from that word...time!



I have lost my job and many other things because of this and suffer from the embarasment of sitting on a rubber ring everywhere! lol. Any advice, comments ect would be fantastic.



thanks, Pami x

Hi Pami 22 ~ I have a friend who also had a horrific time with healing until he began a series of sessions in a hyperbaric chamber (oxygen).  After a number of sessions he has completely healed.

Hi Pami - yes, I had a rectal ulcer and underwent the hyperbaric oxygen treatment Three mentioned.  It is what is given to divers who are in danger of "the bends".  For healing wounds, it forces more oxygen into the bloodstream, increasing red blood cell formation and this aids healing.



I had 72 "dives" over the course of several months.  The rectal ulcer healed.  But I continued to have difficulties afterward (pain, spasming, bleeding) for years until I finally had my permanent colostomy in 2009.  Some of that was due to radiation proctitis.



If your colostomy is "trainable" you might be able at some point to irrigate it and get on a schedule.  The other thing that worked for me was to take one Immodium a day which caused my output to be very regular 3 times a day.



Let me know if you want/need more info.  Hang in there - there are possibilities!  Pam  

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PS - some of my friends call me Pammie too  

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   Also, I still sit on my ring cushion for driving and on hard seats.  Most people think it is for back pain!  But someone asked me if it was my cat's bed.  And some are jealous they don't have a cushion  

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hi! What do u mean by taking immodium once a day. In the morning? Do you irrigate or take the immodium which helps to regulate?

I am also new to this site and I also experience an abundance of  bowel activity since my colostomy.  I seem to ALWAYS have bowel in my bag and it is very hard to empty it from bag.  I sometimes have so much I am left very irritated and unable to pouch having to use first aide ointments.  I have taken the imodium as well but it only stops "diahrea" - soft stool is still a problem in bag and hard to empty.  I guess I am lucky to be having bowel since I have recently been told that I will need hernia repair as it is looped around or inside of colon.  I would assume this could lead to bowel blockage, which evidentally, I do not have yet!  And I have heard there is danger of "strangulation" and this could be a major issue if it happens.

I grow weary sometimes of my life being centered around my "plumbing" but overall, I am okay with being an ostamate.  I would love to learn if there is a way to decrease or train the bowel.  I tried irrigation but the water does not seem to get through the colon enough to "clean" and I get very little bowel results this way -- I am confused by this since I don't have blockage - again, I think that there is just too much bowel.  I guess I could stop eating so I could stop producing bowel - LOL!  

Any other ideas?  

I love this site!

My Ostomy Journey: Keyla | Hollister

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I have an ileo which runs all the time.  I hate it and am discovering certain food create more

problems then others.  Marsh mellows, black licorice, bananas will usually slow it down and or

make the running a little thicker.  When it runs like water I usually get a cold or hot flash.  

I have had this ileo since May of this year and the thought of having it forever is depressing,

but I am one of these people that believe for every problem there is a solution.  But I will admit

99% of the food just makes my situation worse.  Plus my ileo likes anything with sugar, which for some reason will slow it up.  I also take a low dosage morphine time released and that seems to help.  Sounds crazy but because of this problem your hormones could be complicating this situation.  In my case I have used indole 3 made by Now Products, which for some reason seems to heal up problems in the rectum.

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Good Luck  Butterfly48

Thank you for your reply, so nice to know there are people out there x

Thank you pinky for your reply, firstly can i all give you a good laugh by saying just how hard i found it to find and read the replies to my post. Do not know what went wrong but I could not find it in the list of latest forums or anywhere. Maybe you guys can help explain it to me? I really wasnt kidding in my profile when i said i was a technophob! The best of it is I have no idea how I eventualy found it so who knows if I will ever find it again after submitting this post. Lol. So if that is the case can i just take the oportunity to thank all that have replied to me, its is so nice to know that there are people out there who are interested and have shared similar situations, problems ect, thank u. Sorry to hear all that you have been through pinky but it sounds like you are a strong person. I have never heard of that kind of treatment being used for this kind of problem, as you mentioned the only time have heard about it was to to with divers. It is very interesting and makes sense to me. I will try and find out if and where that type of treatment is available here in scotland. I am currently trying the imodium, thank you my surgeon had just recently prescribed it due to the problems i had been having. Finding it dificult to get the balance between being too loose and then the opposite, being blocked  because of it. (I think i may have taken too many that day) But im sure that where there is a will there will be a way. I will keep at it. Thank you all and take care. xx

Find a large teaching hospital, like John Hopkins,Md,  or a hospital that has very experienced colorectal surgeons, like those found in St. Petersburg, Fl, or even a hospital  like the Mayo clinic who has several hospitals and get second and third opinions if necessary. Most of all, use the Internet to research who is successful in repairing this type of defect. Spend all day in the public library if necessary, using their computers.

John H. RN Enterostomal Therapist