Phantom Pains after Rectal Surgery?

I have a question concerning phantom pains/sensations. I am about to undergo the 2nd part of my surgery where they'll be removing my rectum, anal canal, basically sewing my butthole anyway, has anyone on here experienced this kind of surgery? Any phantom pains/sensations? If so, how is it? Is it enough to mess with you psychologically? I'm the kind of person that has a hard time dealing with those kinds of things. My epidural, when having my son for example, liked to drive me crazy! Lol

There are many people on this forum who have had those surgeries and many who have phantom pain/sensations. They are scattered throughout different time zones and it may take a while for them to respond. I have had 18 inches of my colon removed with a resulting colostomy, not the rest of what you will have. That means I only know what I have read. But from what I have read, although it will be difficult, it won't be anything you can't do. Anytime you want a little help, just get on here and tell us what you want. Somebody will be able to help or tell you where to get help. Welcome to the group.

I have had no phantom pains or sensations in 9 years. You just need to hang in there and expect that the sewed butthole takes a long time to fully heal. Keep packing it with gauze as tightly as you can. It mostly heals pretty quickly, but new skin needs to grow over and that can take a very long time to fully heal in this area, which is warm, damp from sweat, and subject to surfaces rubbing together.

I had the exact surgery 8 years ago and yes, there is still a feeling at the stump site, but you will get used to it and learn to ignore it. There are some things that will bother you from time to time, and if you would like to talk to me about it, I would be more than happy to tell you some of the things to look out for. Send me a private chat if you would like to talk.

I had a total colectomy 39 years ago with everything in the digestive tract beyond the ileum removed and sewed shut. I had some issues for 6-8 weeks and everything smoothed out thereafter. I have known people throughout the 39 years who have had the sensations you describe. Wishing you the best. Presently looking forward to the UOAA conference in Irvine, CA this coming August.

Words of Encouragement from Ostomy Advocates I Hollister

Hmm. I had many phantom sensations from my surgeries, but have opted to keep my rectal stump. You never know how medicine may advance:) I have an ileostomy due to UC (I was told). It was emergency surgery. That was 5 years ago. Since no one really knows what causes UC other than inflammation, I have been researching how to address that. What they don't tell you is that removing the rectal stump does NOT cure UC nor eradicate it from your body. It can pop up elsewhere. So I use my rectal stump as a kind of indicator of my level of inflammation. So, I have found a way of addressing the inflammation. I drink an organic turmeric latte every morning before eating anything. The turmeric has reduced the inflammation to the point of totally eradicating any bloody discharge. I still get the slight mucus discharge which is normal, but now no inflammation. It also seems to have helped me with some terrible sores I had for a long time under my flange:)))).

I strongly urge all of you to read up on the benefits of turmeric!!!! Helps so many things.

Hi, Arc78! It's been twenty years since I've had a total proctocolectomy with ileostomy and yes, I still experience phantom b.m. sensations, rarely. I haven't had any pain, just the simple urge to sit on the pot. It's not really a strong urge, besides it takes me back to when I spent 15-18 hours a day sitting in the throne room. If I sit for a few moments, it goes away. Just relax and don't concern yourself with things that might or might not happen. Just remember, no one can call you an ah0le anymore! Welcome to the Barbie butt club! Snort!

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I went through the same OP, will be 2 years in July.....I too was concerned with having the surgery....and almost backed out. It's a serious procedure and yes, they will sew you shut at that end. The surgery was not bad, but the recovery was interesting to say the least. I had it on a Monday & was out on Friday, went back to work with limited hours the next week and was building fence the following week. During my Chemo/Radiation, I put on close to 20 lbs & lost it and a few more pounds during recovery. You will be sore & won't feel great, but the best thing you can do or what helped me the most is walking... & walking..I made it a point to get up and walk 4 times a day.

It did have an impact on me psychologically, the first thing I thought is "what did you do to me" and can I really function this way. The pain will go away, it just takes time and patience. I still have phantom pains, but have learned as many others on this site that have had the same procedure, that's all it is. I believe mine came from the radiation....but who really knows...it's just something we have to learn to deal with....at least we are on the right side of the grass...for now...hope this is some help..

J

Don't worry, you will be fine. I had my rectum and anus removed about 6 years ago due to rectal cancer. You will at first feel the sensation of still having a rectum and anal opening. Sometimes you will feel like your feces is going to come out of your bottom even though you no longer have an opening there. It takes a while for your brain to get used to the new route your feces is traveling. I still get sensations like that once in a while, but not nearly as often. But everyone is different. You will feel sore for a while, but that goes away. Good luck with your surgery and keep us posted. Dee H

I had the surgery and it is tougher than I expected. The recovery time will depend on the stitches, they are aggravating. I agree with the previous posts, but I developed fluid leakage for six months that was messy. My doctor finally gave me levofloxacin that took care of it. You will be fine, don't let it bother you. Best of luck!

I take curcumin pills (the active ingredient in turmeric, that reduces inflammation), and it has brought my C-reactive protein levels (inflammation marker in the blood) down significantly, but still have inflammation in my rectum. I've had a total colectomy and end ileostomy, but the ongoing rectal inflammation worries me (thickening of mucosal layers, and bloody discharge).

Can you give specifics about the drink you are consuming? (the recipe for it), and how long did you take it before you noted an effect on your body? I'm not sure I should take much more curcumin than I already do, but I'd like to better understand what is working for you.

Thanks,

-Teramis

Hi Vikinga, I talked to you a while back about your curcumin recipe. I deleted it. Can you put it back on for others to see, along with me? Steve, thanks