I tried to post about this last night, but I must have fallen asleep before I could submit it. My husband closed my laptop and put it away.
So here I go again....
In 2008, after a very short, ill-advised ileostomy reversal, which caused me to have to run to the toilet up to and over 30 times a day, getting so dehydrated that my brain would not function until I'd been given at least 3 bags of IV fluid, I overtrained my anal sphincter muscles so that I wouldn't have an accident coming home (the nearest small town is a half-hour trip in the car, and the nearest city, Hamilton, is an hour's drive from our home). I'd tightened those muscles so tight that hardly anything would leak through.
I was utterly thrilled when I got Mount Vesuvius back!!
But they attempted to clean out my rectal stump after the surgery, but it was not very successful.... Eight years later, after having what my doctors called phantom pain in my anus - the rectal stump is 4 cm long, and from what I can recall, it is called a Hartmann's procedure.
Anyway, I started having terrible diarrhea-type pain in my anus, but whenever I tried to get the mucus and the sloughed-off lining out (which I discovered was like candle wax), it wasn't until everything eventually turned to liquid that it came out, smelling rather bad, but white and creamy in color.
My surgical specialist sent me to a physiotherapist who specializes in helping people tighten their pelvic floor muscles, as well as the anal sphincter muscles - but she came to the conclusion that she could not help me loosen the muscles, although my specialist did suggest giving me a Botox injection in my anus, which I wasn't particularly interested in trying!
A year later, while I'd kept getting phantom pains, no matter how hard I tried, I could not get it out, and eventually my abdomen would get so painful until I began getting tiny diarrhea attacks, which lasted a few days; just a tiny bit at a time.
Over time, it has improved. My GP did give me some tiny enemas; however, my specialist does not want me to use them, as he's worried that I could accidentally perforate my anal stump and then I'd have an entirely new problem on my hands.
I'd been getting some very painful abdominal pain; ten out of ten, over the last few days, which I thought were due to my Klebsiella pneumoniae ESBL infection for which I am getting a daily injection of carbapenem antibiotics in my backside every day, but we began watching a movie, and I realized that I had to rush to the toilet, and for the first time ever I actually managed to get the entire lot out in one diarrhea attack.
My rectum has finally calmed down, and I am feeling so very much better this morning.
Thanks. Last night I was talking to John, my husband, and I was hesitant to post this, but he encouraged me to do so anyway, as he doubted I was the only one who had a rectal stump!
I'm glad that I did, though.
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Well, I hit the two year mark. I went back and read my posts from when I first found this site. I was very fortunate in that I stumbled upon it only 4 weeks post op. I have said many times that this community really saved me. The first 2 weeks after my surgery I shut down completely. It wasn't until about the 3rd week that my son came in to my room, flicked on the light and told me I was going to have to get back to living because I was scaring him. I had fallen into such a depression. He ticked me off, but it also made me stop and think- what was I going to do? Feel sorry for myself and sulk, or be grateful I was alive.
I've re-read my journals from that time and it was after my son kicked my butt, so to speak, I took an honest inventory and had to dig deeper than I've ever had to. I mean, I had survived a pretty nasty divorce, after a pretty crappy marriage and that was tough. But this was different. I felt like I was now a handicapped person who would be limited in their life and be looked at as a freak. My mental state was precarious, at best.
But then I found this site. I just lurked a bit before posting. I read so many of the other stories and I started to see just how full my life can be, I was not handicapped, and certainly not a freak! The stories of survival, the sense of humor, the support and compassion was inspiring. It was then I made myself get out of the dark, and get my sh*t together.
Not all rainbows and sunshine at first, hardly! But with grace from myself - to myself, and the kindness and willingness of the folks here to be supportive, non judgemental and openly share intimate details about their life circumstances, l not only survived but thrived.
I think of all the years I had suffered with such extreme pain, barely functioning, and the many hospital stays and how that is all behind me now. (All fingers, toes, and legs crossed that I never have to go near a hospital for myself ever again. I think I'd rather have a fork stuck in my eye. I loathe every about them.)
So, to everyone who has been a part of this journey with me, to say thank you is not enough. I'm forever grateful to know you all. My Angels, each one of you.
And as the Grateful Dead famously said,
"what a long strange trip it's been!"
Im so happy I'm tripping with you all.
Fellow stumper here. I'm 2 years post-op. At first, I was passing small amounts of mucus every few days. Sometimes slightly painful, but no big deal.
Then about 7 months post-op... nothing came out for 2 months. Didn't have any pain. Then one day a bunch of dried-out mucus passed. After that, small amounts of mucus started passing again.
I visited my colorectal surgeon. He inspected the stump. Said I had some inflammation (normal), but otherwise all was well.
Mid-December of last year, a small amount of blood began coming out. I had no pain. So I ignored it. 2 weeks passed, and more blood came out. Once in the morning and once at night before bed. A short, liquid stream. The toilet bowl was a reddish color.
I visited my colorectal surgeon last week. He examined my anus and rectum with a sigmoidoscope. This... was uncomfortable and somewhat painful. The result was: Inflammation. The inside of the anus and rectum was red.
We discussed my options for dealing with it. I told him there was NO way I would consider Barbie Butt surgery. Told him I don't get any leakage; I have no pain. So.... I'll just live with it. He was good with that.
Well, I started having to drain the stump 4-5 times a day. Got an uncomfortable feeling in the butt area. Still no pain. Then... I started having trouble holding it in. Especially while sleeping. Started wearing a pad at night. I was unamused.
Called the surgeon back and requested medication. He issued me a prescription for Mesalamine. I don't know what type, oral pills or suppository. My pharmacy ordered it; it hasn't arrived yet. I won't use the enema version, risk of blowing out the rectal stump. To be continued...
I've said it before, I'll say it again:
Gotta be tough... to be an ostemate. And you, dear lady, are among the toughest. Good folks like you inspire me to carry on.
Learn all about skin barrier extenders.
Thank you for the compliment, BeachBoy - you have a very similar sense of humor as my husband, which I enjoy!!
I can remember that after my second to last operation, they tried to clean the stump out, but I had very little success.... I couldn't believe when, after 8 years of what I'd started calling phantom pain on a regular basis, the mucus and gunk finally came out. It took 4 days of tiny diarrhea attacks, and blast, did my anus hurt. Plus, it was bleeding pretty badly for a bit - not really surprising, as I am on blood thinners for the rest of my life!
Like you, all the surgeon found was some inflammation.
AND I really did not fancy having a Botox injection in my arse.... pardon that word - like you, I found it VERY painful when he had a look.
I have been having a lot of pain lately, the type of pain I used to get if I had a bowel blockage.... But my ileostomy is still working like a steam train; there's no distention in my abdomen, although I do feel nausea regularly. My surgeon wants to shove a camera down my throat... Only for that to happen, he needs to find an anesthetist who is willing to patiently attempt to find a vein using an ultrasound scanner (once it took 6 hours....) but as I also have a heart murmur and the heart specialist wants to do the same thing so that they can scan my heart and make sure that nothing has changed in the last 5 years.... I have refused to allow them to try doing it while I am awake, as I fight them tooth and nail even when I am sedated.... So he has to organize that both can be done around the same time if they can give me a general anesthetic, and IF they can put an IV cannula in my vein.....
It gets more and more tricky now that I have hardly any IV access left over.
Still, I'm not going to worry about it; it's the hospital's problem in reality!! However, John, my husband, says if they find a vein and put a lure in, they ought to go buy a Lotto ticket!!
😉
How to Stay Hydrated with an Ostomy with Collin | Hollister
