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thinking of surgery to be sewn shut

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Posted 10/9/2015 6:49 PM (GMT 0)
Hi.

I have a colostomy (1/27/15) and the surgeon left part of the anus and rectum. I'm actually a bit confused about what's left there, but I'm unsure about what to do.

It is a major surgery. I understand. I am just wondering if going thru the pain and the recovery are worth it. For those of you who have gone thru it, once you get beyond the horrors of recovery, how is life? Are there any further problems or limitations ? I know everyone's recovery is different, but what were your recoveries like? Is there a "typical" recovery?

So, the reason Im thinking about surgery is that due to the opening in my bottom and the tissue that's left, I have a LOT of discharge/mucus sitting on my skin all day. I've tried cotton underwear, pads, and cream covered by "butterflies" cotton pads ( to absorb moisture).

The problem is I have skin breakdown all over the area near the opening and around the vaginal area. The wounds are not horrible, but they are large and I have a lot of burning all day, every day. I currently use Calmoseptine on those areas with butterflies (mentioned above). The wounds aren't getting worse but not getting better either.

My ostomy nurse advised me on which products to use, etc. I then talked with my surgeon's assistant at my appointment yesterday, and she confirmed I was using the right thing, Calmoseptine, and to continue using cotton to absorb the moisture. She said we'll see how things go, but that the surgery was "out there".

I know the following might seem like a petty reason for such a tough surgery, but I have worn pads, depends, etc, my entire life due to bladder and bowel problems. I was told I'd likely have to wear pads for the rest of my life due to the mucus/discharge. Mentally, I just cannot accept that. I thought these latest surgeries would free me of the worries of pads and leakage, etc.

It may not seem like a big deal to a lot of you, and yes, I am VERY grateful that the surgeries helped so much, but every time I put on a new pad, it brings back a lifetime of memories of accidents, fear, limiting myself and the clothes I wore. The bowel and bladder problems have been extremely traumatizing for me, causing severe issues with self-image, confidence, depression, problems developing social skills, and basically preventing me from engaging in anything other than constant worry about the bathroom.

I'm sorry this got so long. I rarely tell anyone about my issues in childhood, but this felt like the right place and a safe place to share. Thanks for listening. I appreciate any feedback you have for me.


Sunny.
Posted 10/10/2015 1:52 PM (GMT 0)
my rectum & anus were removed during my one surgery- it was a giant operation! So I can't comment on what recovery is like for that type of sruegry alone. But, I'm SO glad everything is gone & sewn shut. It took a long time to heal, the rectum was the longest & most painful. After about 6-8 weeks, things were fine, & getting better every day. I did go to the Wound Ctr. a couple times, so they could check the progress- it was very helpful, & they gave me some good tips to speed things up. I personally could not stand that mucous- or wearing pads daily either. I too, got the whole surgery to stop that nonsense! And I totally understand where you're coming from, re. accidents, limiting your life, etc. Unless there's a very good medical reason not to do surgery, I'd look into it!
Posted 10/10/2015 8:44 PM (GMT 0)
I understand why you would want to do it. have you consulted with a surgeon about it? That might be the next best step, just to see exactly what you would be in for. If i were in your shoes, I would want it gone simply because you're not using it, why worry about passing stuff and wearing pads... I had the end ileo with my rectum in place, and I was passing mucous, it only happened when I was on the toilet but I couldn't wait to be done with that part. If you're otherwise healthy, it might be a good option for living more comfortably for the rest of your life.
Posted 10/11/2015 12:33 AM (GMT 0)
Looks like we are in the same boat. Not sure whether you have been reading my past posts. Long story short, I have UC in the anus and, although my surgeon stated that my rectum is removed on the operation report....liar, liar, pants on fire doc....part of the rectum is still in there and diseased. The rectum was my problem to begin with!!!!!! All my colon had was MINOR diverticulosis. So, out came the colon and PART of the rectum. My surgeon has retired, what else is new? The surgeon I am seeing now seems to be beating around the bush. He doesn't want to operate, says it is too big of an operation. I used to have some minor bleeding and discharge that would come out my vagina. So, we thought there was a fistula in there. He took biopsies last November and more extensive biopsies and cut the skin tag out on Sept 11th. I no longer have bleeding and very, very little bit of discharge which comes out the vagina. I only have to wear a panty liner, so it is no big deal. What IS a big deal is the discomfort of the disease. There is no dysplasia or cancer...so far! He wants me to use proctofoam, but, either his office or my insurance company is dillydallying around because the pharmacy still has no script from his office and I saw him last Tuesday.
I am going for a second opinion on the 27th of this month. I saw my family doctor yesterday. She looked at the pics they took during the biopsies and she literally teared up!!! Now that is a compassionate doctor! She said she is no colorectal specialist but to her it certainly doesn't look like MINOR UC, which my surgeon classified it...to her she said it looked pretty gruesome. She is sending me to a GI doctor because I refuse to go back to the guy I went to for twelve years and he refused to send me to a surgeon. I wouldn't be surprised if it was him who gave me the evil eye cause he sure was PO'd when I went behind his back to seek out a surgeon online.
This is very disheartening because I did my homework in seeking out a surgeon. This guy was head of colorectal surgery at Penn Medicine, trained at the Cleveland Clinic and had over 30 yrs experience! Probably TOO old...like me.
Oh well, good luck to you. Where are you having your surgery? OH...I also asked my new surgeon what my chances were of getting cancer down there and he said very small.
Posted 10/14/2015 2:44 PM (GMT 0)
Hi Sunny! It's your terrible, never emails friend here! I completely understand why you are considering this surgery. After my proctocolectomy w/end ileostomy, I was left with a small bit of an anal stump because the surgeon thought I was much too sick to handle the whole surgery at once. I was also advised that the last bit may give me trouble and I would possibly need another surgery to have it removed. Well, that was very true and I went back in for stump removal and to be sewn shut a little over 6 months ago.

From what I've seen here, the process of healing from that surgery varies a lot from person to person. For me it was pretty hard to get around for the first week or so, and nearly impossible to sit on my butt for the better part of 3 weeks. I could do it if I had to, but had to take care to support a lot of my weight by pushing up with my legs, leaning to one side, sitting on pillows, etc... There was a very small problem with how the wound was healing, but I was able to handle that myself by packing it a couple times a day and just keeping a close eye on things. All in all, it wasn't a terrible healing process and was WELL worth it to be free of the discomfort, drainage, inflammation and everything else I was experiencing.

Good luck!
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