Severe post-proctectomy pain - seeking advice

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Flutterbye
Jan 05, 2017 11:11 pm

I had the last bit of my bowel removed 3 weeks ago and have been closed up and healing well. Today, I have a really nasty pain where the wound is on my bottom. It is gradually getting worse and even hurts to walk. I don't understand how or why this has come on so suddenly. I'm worried something has gone wrong.

If anyone has had this procedure and has any answers or advice, I would really appreciate it.

Bill
Jan 06, 2017 6:56 am
Very helpful

Hello Flutterbye.

Three weeks sounds about right for all the pain killers to have worn off and for the healing process to have started in ernest. It may seem strange that the pain is only just beginning to mainfest itself but the intestines and colon are part of the autonomic nervous system, which does not have the same sort of connections to the brain as the nerves that nornally tell us we have pain elsewhere. This is why there is no feeling in the actual stoma but there is feeling from the surrounding tissue. Sometimes we don't feel the pain until the scar tissue reaches the part of the body that carries the nerve endings which signal there is pain.

I would reiterate what I said in your previous post and that is: Most of us are not medics on this site and if you are concerned about anything at all, have a chat to your stoma nurse to see what they have to say about it. I know that you have only just talked to her about the other issue but she will not mind if you come back with another question, especially as it is to do with pain. These nurses are there to help and are only too happy to share their experience and expertise. It is good that you can come on here and get an instant response but it will feel even better to have that response from a professional expert. The great advantage inappraoching them is that if your pain needs further investigation, they are in a good position to make arrangements to have that happen.

Bare in mind that people like me are only offering an amateur opinion that may or may not have validity. If what I say turns out to be wrong, I will feel terrible about it if you did not get proper advice from someone who is paid to know about these things. So if you are reluctant to speak to the stoma nurse yourself, perhaps you will do it for us so that you can feedback what she says. That's always very useful to everyone.  

Best wishes

Bill   

Posted by: GoinWithTheFlow

Hubz had a regular checkup with the oncologist on Friday (his numbers are improving), and as they were asking how he's feeling since surgery, they became curious about how he's doing so well with his ostomy, both physically and mentally. He credited doing research online, trying different things, and especially the support from this group. They were asking because they see so many patients struggling to adjust.

We described this group as folks with every kind of ostomy, some for days while others for decades, but all willing to share what's worked for them with the caveat that every individual is different.

We described the most valuable element as feeling like you're not alone in this. That really piqued their interest, and they wrote down the link. It seems they had a few people in mind that might benefit from the community and thanked us for telling them about it.

You know, we can't remember exactly who we learned about this group from, but we're grateful for it every day! Thank you all! 🌻

October Born
Jan 06, 2017 12:02 pm

Hi Flutterbye,

When I had this procedure done, it actually did get more painful as it healed. My doctor had me put rolled up soft gauze there, which I changed every time I used the bathroom. It really did help. Cuts down on the friction in the area and gives it cushion. I had to do this for quite a while. Just a suggestion. I found 2x2 hospital-grade gauze squares folded in half worked best. Best of luck to you and your backside :).

Darlene

Flutterbye
Jan 06, 2017 11:24 pm

Hi

Bit of an update, I've seen my nurse today and managed to catch my surgeon, my poor bottom isn't healing too well, I've had some bloods done and am waiting to hear if I will need an MRI. My wound is so sore :( I may need another op as there is a lot of swelling and the skin has formed into tags and keeps bleeding. I do feel quite down about it, but on the other hand it's fixable and I was saved by having all this surgery. This time next year I will be fine :) :) ;so so glad that I was seen today!

Bill
Jan 08, 2017 9:27 am

Hello Fluterbye.

Thank you so much for the update and we are all pleased to hear that your problems are fixable. It's a good idea to keep an eye on the larger picture in that the problems of surgery tend to be relatively minor when compared to the alternatives. One of the greatest assets we can have when dealing with ongoing problems is endless  'patience'. Another is 'hope'.

I sincerely hope that the problems you face at the moment are just teething problems and everything will work out well for you in the long run. Please keep us updated as you progress.

Best wishes

Bill 

 

How to Get Back to Fitness After Ostomy Surgery with Ryan | Hollister

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Flutterbye
Jan 08, 2017 8:28 pm

Thank you Bill :)