Seeking Advice on Proctectomy Recovery Time and Potential Discharge Issues

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jaykay75

Hello

I am new here but have been an ostomate for more than half my life. I was diagnosed with ulcerative colitis in Sept of 1994 and had an emergency total colectomy three months later. In the summer of 1995, I had the J-pouch surgery but sadly, it lost its blood supply and failed. The J-pouch was removed but they left my rectum intact. I have been living with an ileostomy ever since.

Up until the last few years, all has been fine. Eating almost anything I want to, doing any physical activity that I'm interested in (bicycling, skiing, swimming, hiking...). The only thing I haven't done is have children and I'm pretty sure the scar tissue from so many procedures is to blame for that. Whatever, I'm over it. I'm 40 and hubby and I have other plans now.

In the last few years, I have had periodic (and now constant) discharge from my rectum and pain that varies from a dull ache, to it hurts so bad I can't even sit on one cheek. The discharge isn't constant; I would estimate that it adds up to a tablespoon (or more) on any given day/night. At times when I am unable to get to the loo right away, it travels up my butt crack (is there a medical term for that? lol) and then gets chapped and causes skin irritation. It is unpleasant to say the least.

Docs have prescribed Flagyl (Canada), an antibiotic with horrible side effects - nausea, dizziness, dry mouth, etc. It worked great at first but has become less effective as is the nature of antibiotics when one takes them for extended periods of time. I want to be rid of this nonsense.

CT scans have shown that there is a pocket of fluid just above my rectal stump - it is unclear whether or not that fluid is the source of the discharge or if my rectum is producing it on its own naturally. I have a tentative date for a proctectomy on March 23/16. My surgeon (not the same one from 1994/95) has consulted with a colleague and the radiologist and all are in agreement that a proctectomy is the best solution.

My main concern is that the proctectomy will be a band-aid... what if the discharge is from the pocket of fluid above my rectum? If so, wouldn't closing the rectum prevent the discharge from exiting and therefore be more painful because it has nowhere to drain?

And, if I do go ahead with the proctectomy (at the moment that is my intention), how much time will I need to recover? And when can I go back to work? I can't imagine a worse place for a wound than between one's cheeks.

I look forward to your responses. (and I apologize for my long-windedness.)

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Mars1954

I previously had an ileostomy which was going well, but also suffered from very annoying discharge. Eight months ago (June 2015) I had a proctectomy. It was the best thing ever. I was quite sore for a while, and had to sit on a waffle cushion, but within six weeks I had healed up and now I am so thankful that I had that surgery. No regrets. I wish you well and hope yours turns out well.

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Past Member

Hi jaykay75

UK has a group called Ileostomy and Internal Pouch Support (iasupport.org) that has an excellent forum with many questions about proctectomy amongst other things.

I don't think anyone can advise regarding the exact cause of the discharge (other than your own medics), but you will find plenty of information about healing.

One word of caution is that people who 'plain sail' rarely post!

Hope it all goes well.

Take care

jaykay75

Mars1954... Thank you for your response. I hope that I am without regret when it's all done too. Did you have pain associated with the discharge?

Ladygunner... Thanks to you as well!

Past Member

Hi JayKay,

I am six weeks on from proctectomy and see my surgeon today - hopefully to be discharged from his care as it's healed brilliantly and I only feel the occasional twinge of pain. I had a subtotal colectomy with permanent ileostomy in August 2014 and was supposed to have my proctectomy August 2015.

As the surgeon was so busy, I had to wait until January 2016 for the proctectomy and during that time my rectum developed problems. The hospital didn't bother checking on those problems because they knew I was due surgery, but I could tell things weren't right inside. I was getting a lot of pain, quite a lot of yucky discharge from my bottom and occasional trace blood.

When they operated and removed the rectum and anus, they told me they found the rectum was infected and surrounded by pus (delightful!). There had been a tiny hole in the rectum, so anything it created (regular mucus or colitis mucus) was leaking into the cavity around it. "You must have been in quite a lot of pain," they said. "Sorry about making you wait all these months." Yeah, thanks! :D At least it's over now.

I think in reality what will happen for you is they won't know exactly what they're looking at until they're operating. Whatever they find is causing your problems, they will be able to identify it and deal with it appropriately during your procedure. It won't be anything they've not seen before, and you will be in very safe hands. They wouldn't close up your back passage completely if they felt it somehow needed to drain. Ultimately they have the option to leave it open, should that be the right course of action.

In terms of proctectomy recovery time, for me it has been much faster than the ileostomy. I was worried because they told me it was potentially a longer operation - I imagined it being the same all over again. It was nothing like it! I was out of hospital on day 3. It is certainly uncomfortable and a really tough place to have a wound on account of that area getting so much movement, pressure and very little fresh air (haha!). But for me, the pain has been manageable, albeit with the help of painkillers to begin with. And on balance I'd far sooner bear this healthy kind of pain in the arse than the infected, health problems kind.

Best of luck with your procedure,

M

 
How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister
LadyHope

Hi everyone, I had my rectum removed at the time of my total colectomy. Although it was not comfortable, I was able to manage with minimal pain medications. Healing took about 3 months. I was able to get on with my day after that time but the discomfort would escalate as the day progressed. Healing takes time so I would not rush the process. Once the stitches dissolved, I was much better. Today I am able to ride a bike with no problems and sit with no problems. Life is better. Take care. LH.

jaykay75

I appreciate your comments BadAss and LadyHope. It's so nice to have others to talk to.

A little update... Part of the hospital is under renovation and long story short, there was a flood. Less than half of the ORs are usable. My surgery has been postponed for at least 6 weeks. Frustrating, to say the least.

jaykay75

Here I am three months post-op and I'm feeling great. I want to thank everyone for their comments and support. This is truly a great place to find answers and I wish I had more time to read through all of the topics and provide input where I can.

My proctectomy surgery was done on April 12th and I came home two days later. I was fortunate to have who I believe is the most competent and personable surgeon imaginable. I couldn't be happier with the care he provided both pre- and post-op. It made my experience so much easier.

Of course, I had a fair amount of pain but I was able to manage it with meds and by week 6, I was taking them only at night. The worst part was dealing with the sutures; though they were dissolvable, they were stiff to begin with and poked into my skin. Once they were gone, I began to breathe easier and felt I had the worst part behind me.

At 7 weeks post-op, I noticed a small opening in the wound. I was surprised but not worried - my second follow-up appointment was just 5 days away. But a day or two later, it began to leak the same discharge as before. My heart sank and I had a little cry.

Then I recalled what my surgeon had mentioned on the day after my surgery which was that these wounds tend to be finicky. They'll ooze more than other wounds and may even re-open, so I took a deep breath and kept a positive attitude.

The discharge lasted less than a week - by the time I saw my surgeon, it had stopped. (This earned me a high-five from him lol!) Rather than putting a stitch or two in, he elected to give it more time to see if the hole sealed up on its own. Two weeks later, it had done just that. At my last appointment he said he'd be happy to see me again if I needed any warranty work done.

I'm happy I chose to go ahead with the surgery and in fact, I wish I had done it sooner. No more discharge. No more feeling like I'm sitting on something swollen. Sitting for long periods of time tends to irritate it, but only slightly. In two days hubby and I are going camping with our family. We're going quadding on trails through the bush and mud, being bounced around, jostling to and fro. Last year on the same trip, we rode for more than 7 hours. I don't know how my body will take it but there's only one way to find out!

If you're interested, I'll give a brief update when I get home on Sunday.

Cheers, all!

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