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Living with a Stoma
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Hello....I am new to this and am hoping you could answer a question or two I have. I was diagnosed with Crohn's Nov 2002, emerg surgeries, ileostomy, spending a great deal of my life in the hospital or home hooked up to things just to end up going back from infection, eventually attempted resection few days later another emerg surgery and now have colostomy. So with that all said,

My first question, does anyone worry about the stoma being pushed or popped back in, like when my cats or dog step right on that spot, or if I want to lie down on my tummy, just to mention a couple things? This question never gets acknowledged when I ask.

Second question, again no acknowledgement to my question, it's my understanding that the anal still has secretions (normal) thereby requiring the mad dash to the washroom thinking you have a major painful BM to pass, just mucus and/or blood/clots (sometimes lots and lots of blood/clots) This unfortunately happens to me more than I like and there have been mishaps where it has a mind of its own decides to sneak out and all of these things happen whether I try to eat something or not. By developing the usual painful, bend over, teeth clenching pain and this pain then shoots from the top right to left and down but also down the middle across my pelvic area and includes sharp pains within my vaginal area.

Now I do have extensive amounts of scarring which I can possibly blame some of the pains I feel, but do you think the majority of the pain is caused by food trying to pass through the intestines but with all the scar tissue it has to wiggle around creates the discomfort? I don't know.

Lastly, does anyone every have sharp pains through the belly button? It sometimes feel like the one time when I had something work its way out from my insides that looked like a green bristle from a brush but finer.

I didn't know Crohn's existed until after I woke up from my coma days later, and there it was and nothing was explained to me what Crohn's is, can I die from it, can you cut it out to be rid of it, etc.....I'm so glad was have Google (sometimes too much information is bad)

Sorry for the rambling......Thank you in advance to anyone with any thoughts and comments,

ps) I have a colonoscopy scheduled for Oct, so maybe something can be determined from that.

2 Replies

hi i have had a stoma since 2001 for crohns .. and its not the greatest thing to have slapped on your side. but you do find the stoma is very robust i work as a engineer and have knocked it on more than one occation and has been ok . the stoma can change its size in time . mine however is now fully recessed and can get abit sore. but i am currently still inflammed and i have just started humria. With regards to your other issue.. depending whats left inside the urge to run to the toilet is pretty normal and will not go away but the urge for the toilet will shorten once you work it out in your head. you will get discharge from back end which again is normal which can range from mucus or some pink stuff have been told blood could pass and not to worry to much. normally this discharge can be controlled by yourself just like going to the loo. but if the discharge seems to be constant and not controlable and leaks, this could be the crohns still being active and being inflammed somewhere so i would advise speaking to you ibd nurse or consultant .also any concerns regarding your stoma have a chat with your local stoma nurse . also the providers of your bags normally provide lots of help i use Salts medilink and they do provide lots help and advise . hope this has helped a little


hi kd-67, this is another hu site to look at too -


here are 2 (non-hu) official links you might also find useful.



Crohn's and Colitis UK - Official Site


Crohn's & Colitis Foundation of America - Official Site