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Recovery from proctectomy

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Posted 2/28/2014 7:27 AM (GMT 0)
Hi,

I tend to be a little wordy but will try to be brief here.

I'm now 6 weeks post-proctectomy and it's healing very well. I was doing great with being able to sit longer periods of time, with little pain. Last weekend though my pain level started increasing and I'm back up to a 6-7 (when last week I was a 4-5). I just saw my surgeon for a routine check and he's very pleased with how things are healing. He reminded me that when I have pain I need to take my pain med, which I haven't been doing. Even with just a little pain I've been trying to get through with just Tylenol.

Just curious if any of you have had similar experiences with things being/feeling better then back-sliding.

Dianna
Posted 3/2/2014 7:07 PM (GMT 0)
Are you on a VAC wound healing unit or is it healing "naturally"?

I had my rectum removed on Nov 7th, 2013 and I'm still healing. I was on a vac unit for about 5 weeks, but the machine I had wasn't working right, so while the initial healing was pretty quick, it wasn't as fast as it should have been.

I was able to sit without much discomfort since about the end of January (so about 10 weeks post op) and now, even though I'm not fully healed, can sit without any pain or discomfort.
Posted 3/2/2014 8:18 PM (GMT 0)
Hi,

No wound vac - just healing on it's own. My surgeon said everything looks good and is healing well I guess I'm just frustrated that it's taking longer than I want. I've been told I'm kind of impatient (ha ha). I appreciate you sharing your experience. How long have you, (or did you need to) stay on pain meds?

Dianna
Posted 3/2/2014 9:57 PM (GMT 0)
Looking at my notes, I was only taking one 5mg tablet of morphine and a tylenol up until less than 3 weeks post op - then I took one a week later. I really went low on the pain meds - even in the hospital I was barely using the pain pump, but I went through years of the most intense crohn's pains and didn't take pain killers for that - I felt that if I don't know how bad I feel, I won't know my true state of health (I DO NOT enjoy pain and I should have been controlling it better).

The worst part about recovery was more with the vac unit, because the thin plastic film they use on your skin was really itchy CONSTANTLY and you can't itch through the plastic!

Once I'm fully healed, I'll be writing a blog post about my full experience with the rectal removal including photos of the healing (with a disclaimer, of course) - I would imagine that you would be much further along in your healing by the time I finish that.
Posted 3/27/2014 9:41 PM (GMT 0)
Hi,

Its me again now 8 weeks post op. Still having enough pain that I take the pain meds every day. Generally now taking one 5mg percocet alternating with ibuprofen. Then 2 at night. Pain Level of course fluctuates with how much physkcal activity and sitting I'm doing.

My question is how long have any of you been on pain meds?

Thanks.
Posted 3/27/2014 10:04 PM (GMT 0)
What did you have your surgery for? IBD patients should not take ibuprofen.
Posted 3/27/2014 11:11 PM (GMT 0)

DSZ said...
Hi,

Its me again now 8 weeks post op. Still having enough pain that I take the pain meds every day. Generally now taking one 5mg percocet alternating with ibuprofen. Then 2 at night. Pain Level of course fluctuates with how much physkcal activity and sitting I'm doing.

My question is how long have any of you been on pain meds?

Thanks.

you had a proctocolectomy but do you have a permanent ileostomy? Did they sew your bum closed? Just trying to figure out where your pain is coming from. I was on Vicodin for about 4 months after my j pouch surgery. I had a complication along the way so I needed the pain meds for a while.
Posted 3/28/2014 12:20 AM (GMT 0)
My apology for the confusion. I had a colectomy in 2003 and have a permanent ileostomy. My rectum wasn't removed at that point. Since my rectum was still there, the tissue was inflamed - proctitis and it gradually got worse over the years.

In January I had it removed and my anus sewn shut (proctectomy) so that's the surgery I'm recovering from now...:-).

As I'm sure many (most?) of you know, the healing process can be frustrating. For me, the up and down of feeling good and relatively pain free for several days, and then the pain increasing quite a bit for a few days is definitely frustrating. My surgeon is not concerned and reminds me that this is part of healing.

I just wonder how many of you who've had this surgery were still taking pain meds other than tylenol or ibuprofen at 2 months post-op.

Another question that I have is which seat cushion works best for any of you? I've been using the Contour Kabooti which has worked well up until now. I think maybe I've worn it out, lol. Any other good ones out there?
Posted 3/28/2014 1:05 AM (GMT 0)
I didn't have your procedure but had pain none the less and I believe after surgery there is nothing wrong with using the pain meds as directed for as long as it takes. I can imagine the healing of the sewn anus is a long, uncomfortable process. Don't be afraid to take the pain meds. Hopefully someone will be along who had the same procedure who can shed light on the recovery process.
Posted 3/28/2014 1:15 AM (GMT 0)
     As most of you know, I had a proctocolectomy with end ileostomy and my anus was NOT sewn closed.  My rectum and colon are completely removed.  Apparently, he saw no disease directly inside the anus.  My problem was not Crohn's, it was ulcerative proctitis.  about a month post op I developed a hematoma inside the anus.  My surgeon inserted an anuscope and some kind of vacuum and suctioned it out.  I was placed on antibiotics for two weeks.  When I returned to him he looked inside again and it was healed.  He said he doesn't sew the anus closed because, in his opinion, there were more complications when this is done.  I know this isn't the norm for most of your surgeries, but, hopefully, down the road I won't have a problem with disease in the anus.  I am almost four years post op and feel fine.
Posted 3/28/2014 3:38 AM (GMT 0)
@ DSZ: Hi, yes, I've been there. I had my jpouch removed in October (ulcerative colitis, 2 step jpouch in 1995/1996) after having it for 18 years. I also had my anal closure done at the same time as having my jpouch removed and perm ileo installed.

At two months post op I was doing much the same as you. I would have a good one or two days and think, gee, this butt thing is healing up ok. Then BAM I'd get a bad day. I only took tylenol (extra strength) - but there were time I needed to take 4-6 a day.

My sutures were dissolvable, the first few weeks I couldn't feel a thing to be honest, then after about week three the sutures were drying out and it would get uncomfortable for me. I was told by my surgeon not to soak in the tub or have sitz baths as she did not want the sutures to dissolve before they were ready to. So, I would shower in the morning and pat the area dry with gauze, then at night I would use a squirt bottle to clean the area and dry again with gauze.

I am now over 5 months post op and everything is healed up. If I "spread the cheeks" and take a look, it just looks like a thin line, nothing is obvious and it feels ok to sit directly on it.

I do get phantom rectal pains daily, but they are less intense as the months go by, and they occur mostly when I'm walking or at the gym doing cardio. Could phantom rectal pains be part of what you are experiencing? The best thing for me to do when a phantom pain is coming on is concentrate on breathing and not pushing my butt muscles. If it's a really bad one, I will go sit on the toilet and it helps. They are lasting less than 10 seconds now, and my surgeon said that some people will always have them, and some people will never have them, but the important thing is NOT to give in to the feeling of having to push.

I didn't buy or use any seat cushions. I would just sit one cheek, then the other. I would lie down on the couch or my bed often.

Also, two things that really helped were walking daily, two or three times if I could, this strengthens the muscles that they cut up and gets blood circulating to the area. The second thing I would do, and it sounds strange, is once the butt incision healed I would put vitamin E (just buy softgels and poke a hole in them) on my hand and massage my butt crack. That helped break up the forming scar tissue and it's really soft down there, I no longer feel like I'm sitting on a tennis ball.

I hope my post helps you some, please keep me updated.
Posted 3/28/2014 4:14 AM (GMT 0)
Poucher -

I really appreciate you sharing how things went for you and your suggestions...as well as the smiles your post gave me. You're pretty tough to only use Tylenol...that's what I'm striving for, but my tolerance for pain is pretty low.

My surgeon also told me not to do sitz baths, or soap there when I shower because it could dry out. I also have/had(?) dissolving sutures and honestly I don't know if they're all dissolved yet since they're internal. I have to guess that they are at this point. But maybe it's just too dry in there. I'll check with my surgeon to see if I can do the Vitamin E treatment you recommended.

I've been pretty active, alternating between a 1-2 mile walk/day and very low impact water fitness. It feels good to finally be able to stay active, but towards the end of the day I'm pooped and sore.

I think I've experienced the phantom rectal pain, but it's not really pain. Then again maybe it is. It's just like when I had the proctitis and all of the sudden I feel the urge to push. But now - no leaking butt YAY!. I do just what you said - I take some deep breaths and it passes. Also sitting on the toilet relieves some of the pressure - - but every time it happens I have to say I'm so glad I finally had this surgery.

Thanks for the encouragement...I'll post as things get further along. I'm glad to hear that you're feeling well.
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