Abdominal pain after colostomy: Seeking advice on sitting discomfort

Hello, I was wondering if anyone else has experienced the discomfort I have had ever since my colostomy following the discovery of rectum cancer 12 weeks ago.

I am unable to get comfortable sitting upright as it feels like everything is being squashed inside. I sometimes also get a tugging feeling at the bottom of my stoma.

Above my stoma is swollen and it feels like I have to hold myself as I get up to support it. I'm sure I have a hernia, but I'm getting no support from the surgeon or hospital.

I can't see myself ever being able to leave the house as I'm only comfortable lying down.

Hi. I went through the same thing you did. I still had some pain after 3 months, but it was considerably lessened. My first scan after the colostomy showed an area of scar tissue around the stoma. The tugging might be due to that. Otherwise, I don't know why you would be having the pain, other than, like you said...a hernia. They usually do a scan about 3 months after the surgery. Have you had it yet? It should show what's going on. If you haven't been scheduled for that yet, I would certainly ask when that will happen. You need to find out. Don't be shy about insisting on such a thing. Good luck to you with everything.

Linda

Thanks, Linda,

No, I've not had a scan yet. I tried ringing the hospital today to speak to a stoma nurse for some advice as when I changed my bag earlier today, my stoma had half sunk in. There are only two nurses based at my hospital, and both were off work today. :-( I've only learned half the things I have from using this site. I've been given no support from my hospital, and I don't know anyone personally who has a stoma.

Hello Hayley80. Sorry to hear about your problems. 12 weeks is still early in the healing process and some of what you describe might be the scar tissue beginning to form. However, this should all be checked out by medical staff and suitable explanations given to you about the causes and possible remedies. 

With some surgeons, they think that their job is done once they have wielded the knife and the aftercare has nothing to do with them. Where this happens, the hospital staff are likely to collude with them and act as a block to communications in that direction. This is why we have stoma nurses, who are designated to deal with the aftercare and who probably know a lot more about the problems than would a surgeon who gets protected from things that go wrong - unless further surgery is required.

As Linda has pointed out; Don't be afraid to put your case to the stoma nurses and if you do not get satisfactory answers and support, then make a formal complaint and ask for a second or third opinion.  If you are not up to doing this for yourself, then you can ask your local hospital/GP or health authority to put you in touch with a healthcare advocate who will speak on your behalf.

I hope this is helpful.

Best wishes

Bill 

Thanks Bill, what you say makes sense. I feel like I've just been left to it. I asked about a hernia from the start as the lump above my stomach looked huge, and they said it was either where the muscle had been cut or could have been back up stool as, previous to the op, I'd been unable to go to the toilet for 6 weeks. I've asked several times to see the stoma nurses when I've attended chemo at the hospital, and they have just not turned up. The aftercare is rubbish :-(

I had to use a pillow for quite a while after my surgery. I also had to do a lot of lying down. It may be scar tissue. I had to have another surgery to have it removed. Just talk to your surgeon about this. It may also be that your body is telling you more time is needed. In any case, talk to your surgeon about your concerns.

Hayley, you should be getting a whole lot more support than you're getting. I can't believe you've had trouble getting into see the stoma nurses! Geez! As several people pointed out, it is early. It takes a while to heal up. Hopefully, that's all it is... But you should still get better service. Don't give up until you get what you need.

It is sad in many areas the lack of information that is provided after surgery. I am one of the lucky ones. The hospital that did my surgery does not have a stoma nurse. But another local hospital has a great department, 5 ET RN's, and a great support group with monthly meetings, get-togethers, etc., and on call every day. They do know so much more. At our last meeting, there was a person from one of the suppliers of appliances give a talk and show us new things. - Hunt around your area hospitals even if you have to go a distance to see them. At least they can answer and give advice over the phone.