Rectal Scar Tissue Itching 12 Years After Surgery?

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Telecaster

My rectum scar tissue has started to itch and feel strange recently, though there are no outward signs of any infection, it all looks as usual.

It first started about 4 weeks ago, just before I had a groin hernia op, and I was wearing a support belt. My GP put it down to the belt pushing the hernia back in, and a piece of gut pushing down onto the scar tissue.

So I had the hernia op, all went well, started walking a bit more to recover, after spending some time sitting around and resting, then went on a 3-mile walk. The day after, my rectal area started itching again, feeling of stuff gurgling round near it, feeling that when I stood for a while there was downward pressure almost like an "urge". Goes when I lie down, gets worse when I walk for a while, or sit in one place for long. When I stand up, I feel downward urge pressure a couple of minutes later, or after eating or drinking. Very much in sync with my stoma working too.

Saw two GPs early last week, who said it was a fungal infection. Gave me cream and antihistamines which did nothing, the cream made it itch more!!! Not an infection, there are no outside issues or soreness.

Saw another GP on Friday, who agreed with the first, and said it was very likely that the successful hernia op had pushed my guts back. She told me to do pelvic floor exercises to strengthen the rectal area which she said may have got a bit lazy, and that men were being encouraged to do these exercises anyway.

Then my surgeon rang me today as a follow-up. He then said that this was not possible, the guts stay where they are, that the itch could be to do with the original ileostomy surgery. He said it was not possible for the intestines to move about the cavity, even though I have less to move around and more space for them to move around in.

People with a rectum wouldn't feel this though, the rectum would keep any gut away from that area, and surely my ileum would fall down into the space where my colon was

So I have a whole range of medical professionals who can't agree on a very annoying and irritating sensation in my body, that I CAN feel, I know is there, and is not "psychological"

Maybe it's muscular, it gets worse after walking for a while.

Maybe it's circulatory, sitting on it relieves it a bit, but when I stand up, it feels like stuff is pushing down a bit.

But it's driving me mad, especially as the hernia repair is doing very well and gives me little discomfort less than 4 weeks post-op.

Anyone experienced stuff similar to this?

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Past Member

I am a total '_'itch today ... that is not a witch - you might try a 'B'. I 'hate' doctors. Why can't they ever say "I don't know", or "we will try this if it doesn't help 'call me' or come back".

I am reminded of several older posts that speak of having rectal discharge - often excessive - of mucus, blood or leftover fecal matter. Try looking at old posts and see if any of their suggestions seem to fit. Or try a search of "rectal pressure" or "rectal discharge". There might be some answers. Phantom push feelings are relatively common. Maybe something really wants to come out. Be careful but keep looking for answers.

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Shelly2011

I feel this way when there is a buildup of mucus in the last 2 inches of the colon and the rectum that I have left. I will go to the restroom and pass this, and then I am fine. I am very sensitive to this area because of the amount of fistulas that I have (4). I have just begun my week 5 post-op for the ileostomy. I don't know if this will help or not, but I have experienced the itching issue also, and this always meant that I had another fistula forming.

Telecaster

The thing is, I have nothing there at all. It's all gone and completely sewn up, apart from a few little cavities where the stitching was done.

I don't pass any stuff at all out of the back end. I had it completely removed a year and a half after the original op, as it used to bleed constantly from whatever UC was left in there.

I have a complete Barbie Butt, so the feeling of pressure is very odd, as is the hot and cold itchy sensations. Yet I have no outward soreness. My GP examined me this morning and saw nothing wrong there, no herniation, no lump, no inflammation at all.

Went to my GP today for a referral, which he had to get some blood test results before he could do. But again, he said that my insides could be causing the pressure, that I could have a loop of bowel pressing against the area.

Something that the (general) surgeon who did my hernia repair said couldn't happen.

So that's three GPs that say my bowel could be irritating it by resting there, and one GP and a surgeon who say it can't possibly happen. The same surgeon who said that the early hernia repair aching and stinging couldn't be caused by internal bowel pressure! When it was obvious to me that it was, it doesn't do that much now, apart from when I eat a big meal.

The same surgeon who then suggested that the itchy rectal area could be a hernia! So what would come through that hernia apart from abdominal contents? Which surely would be there in the first place.

Doesn't inspire me with much confidence in the guy who did the hernia repair either.

GP said I could have a piece of bowel resting on a nerve there, as there are still a lot of nerve endings in the muscles there, which I still have as I still have anal muscles there.

It could also be muscular as it tends to itch more when I have been walking around and stood up for a while. Maybe it's internal bruising from all the sitting about I have been doing recently, and then using that muscle to walk and move more post hernia op.

Waiting for the blood tests to come back, and I am seeing him on Friday anyway to review my return to work after the hernia op.

Still itching though, just got to get on with things and not worry too much about it.

A real pain in the bum, which I thought would be a thing of the distant past.

Telecaster

Seems like the itching is being caused by a few varicose veins around where my anus used to be, probably due to some poor circulation and sitting around more post hernia op.

GP prescribed me some steroid cream but said to use it sparingly.

Doesn't explain the downward pressure though, which seems to come from my coccyx area.

GP said that it could simply be the fact that my ileum now rests in my lower bowel cavity more, and after the hernia repair where part of it was living outside the cavity, it had to find its natural place again.

Even though the general surgeon who did my hernia op denies that this could happen!!!

I'll put up another thread about this somewhere, regarding what fills the space once a colon and a rectum is removed.

 
Words of Encouragement from Ostomy Advocates I Hollister
pussycat

Hi telecaster, it's three years since I had my final, end of the line, surgery and I still have similar
sensations. Maybe it's like the sensation amputees have when they can still feel a limb and want to scratch an itch that can't possibly be there. My only consolation is that the cancer cannot return to something that isn't there, even if I do want to scratch the life out of it !!!!!
Best wishes, you are not alone.

Telecaster

Well, I have been using this natural herbal cream, which has taken away a bit of the itching, though I can't help feeling that the itch is related to my guts moving around after the op.

When I sit for awhile, or eat, and then stand up, my whole insides seem to go mad, drumming against my lower back and then my rectum area, which makes me itch more.

Can't help feeling that simply stuffing my guts back in and putting a solid mesh in my tummy has increased my abdominal pressure and moved my looser guts to a new location, and when I stand up and sit down they fall into a new place, sometimes right on my old scar tissue.

Last night I had a big tea, then went out to help tie up some tomatoes in the greenhouse.

The sensations nearly took me over for half an hour, guts banging against different parts of my body, my stoma doing its work. Had to sit down for a while.

Feels like I've got a back passage again and nothing to push through it!!!!

Telecaster

Much more sore today, been on my feet most of the day.

Looks like I have a nice little set of external piles on a non-functioning rectum!!!

Itch all day, especially when standing for a long time. Area is sensitive so I can then feel my guts working through it.

Creams don't help, maybe I need to have them removed.

Anyone else have Barbie butt piles???

Past Member

Not that I ever had any real doubts..... But, life really isn't fair.

Shouldn't there be enough at some point? Done enough, given enough, been through enough, suffered enough, ...ssscccccrrrrrrreeeeeeeaaaaaaaammmmmmmmmmmm. STOP

Telecaster, are you sure you don't want to see a doctor again - another doctor. This one should be fixable. Seems a bit beyond ordinary side effects. Carol

Telecaster

Saw another doc on Friday, who also said it could be different parts of my scar tissue stretching at different rates, such that some parts of it are pulling, which it does when I am active and walking a lot and stuff (i.e., going about my busy life!!)

This could be sending off odd nerve signals to my brain.

Doesn't explain the odd pulsing I get after eating much of which seems to be in sync with my stoma working. This pushes against the scar tissue and makes it twinge and feel either sore, itchy, or even cold.

He also was the one who said that my guts couldn't be pressing down, then in passing he asked me how big my hernia got to.

When I told him it was the size of a mango for its last few months, he then said, "Ah, possibly.....!"

He has referred me to my original surgeon who removed my rectum, (luckily he is still practicing at the same hospital) and also prescribed me some anesthetic cream which seems to have taken the edge off. It also has castor oil in it which seems to soothe things too.

Just trying to ignore it and get on with things, but want it sorted before I go away on my hols with my family.

Funny thing is, walking a lot makes it worse, but riding my bike doesn't.

So that's what I am doing this afternoon, transferring the soreness to somewhere else!!!!

Telecaster

Hopefully, I'll get my referral soon. It's not so bad today, but if I have an active day, the sensations drive me nuts.

GP on Friday said I could use more of the anaesthetic cream, plus I could also use stuff like Anusol as well.

I've been slapping it on more and noticed it is less irritating.

Anyone else have Barbie Butt problems this long after surgery?

Could I have a nerve trapped in my scar tissue somewhere that has only just happened?

Past Member

Sounds like you've got a case of phantom rectum. I had a total colectomy 10 years ago and get the sensations you describe from time to time. Your recent surgery may have triggered the feelings you are experiencing.
Take comfort in the fact that they are temporary irritations and as time goes by these feelings will subside and hopefully disappear.

Telecaster

I did a rehearsal last night where I was stood up all evening. The damn thing was feeling cold, wet, sore, etc. all night. Especially when moving around and stuff, it seems to be something in there twingeing and setting off nerve signals. It was also seeming to occasionally spread up to around my coccyx area too. Very odd.

One of my bandmates is a GP by profession, and he was asking me how my recent hernia op went. I told him the hernia was doing fine, but then I mentioned the other trouble.

His immediate response was nerve issues, as he said if it was an infection it would just be sore, and creams would relieve it.

He suggested I saw a doctor at my local practice and get some nerve medication.

Which I did this morning, so we'll see how that goes.

She prescribed me some Amitriptyline tablets to take one a day at first, then up to two or so.

Who knows what they will do......?

Telecaster

And these tablets seem to be having a very mild effect on the itch, yet a big effect on me in general.

Making me sleep like a baby at night, then feel manic in the morning. Feeling sort of jittery and not able to concentrate either.

And apparently I have to watch my alcohol intake on them, not good for a trip to France I am doing in a few days.

Anyone else taken Amitriptyline?

Telecaster

Not really getting any better, wondering if I have got an incisional hernia there to be honest.

Seems to feel sore when I take big steps or climb stairs.

Yet I can't see any obvious bulging or anything.

Or is it just a pulled muscle there, or one of the little webs left over from the surgery pulling a bit.

Seems to work in sync with my stoma working, and when I get up from a sitting or lying position, I definitely get a sensation of downward pressure there.

And it varies between feeling itchy, sore, and cold even.

VALERIE

Hi, I took Amitriptyline for 3 months. They were prescribed for nerve damage pain. All they did was make me drowsy and want to sleep all the time. Then the stoma nurse told me Gabapentin was better for nerve pain. I've been taking 900mg a day for the last month. It doesn't seem to be easing the pain that much, but at least I don't feel so sleepy. Not much use though when the pain stops me from doing everyday things.

Counting My Blessings
Urge to go: When I had my first colostomy, my wound care nurse told me it was common to feel the urge to push, even though I no longer had an anus or the bottom 10-12 inches of colon. She explained it like the ghost pain that amputees get, feeling as if their leg was still there. My second surgeon told me there was a nerve at a spot that was still left on my colon. When material passed that nerve, it still sent messages to push. I don't know if either is correct, but both explanations make sense to me.

Bowel moving down into the empty area after removal of colon/rectum: My first colostomy was December 22, 2008. The second was May 19, 2009, to correct the first. Since mine was due to cancer, I have had PET scans every three months. In March, there was quite a stir because there was a flare-up of color where my rectum used to be. A dedicated CT scan showed that my small intestine had moved down into that area and that is what was showing. No new tumors.

I was told that colostomies never close up. My first one did. You've been told that the bowel can move down into your empty area. Mine has.

Lesson: Never say never, except to tell your doctor.
I went to a different surgeon for my May procedure and was very happy there. What a difference!! Perhaps you should get a second opinion. You've been very patient with this ignorance.

Itching: I believe you said you have tried many creams. Have you tried Eucerin? That helps me with any itch. And finally, cancer can evidently pop up anywhere. Has anyone done a biopsy in the area where it itches? I'd be having that done just to settle my own worries, if nothing else is giving you relief.
Telecaster

I have an appointment with my original colorectal surgeon very soon, so hopefully he will be able to shed light on the matter.

Might try that cream, at the moment I am using Sheriproct and Anusol.

Funny because I have just come back from a long holiday, then had a busy day yesterday getting stuff sorted for kids back to school, tidying, DIY and stuff. I had my first day back at work this morning, and thought I'd get up and be really suffering, but it's noticeably less itchy today, either that or I'm just getting used to it.

As for it being cancer, well sometimes when I am sat down, particularly in the car, I feel like I am sitting on a lump under my coccyx, yet I had some blood tests done about 6 weeks ago, and they all came back clear.

I'll know more (hopefully) when I see my specialist next week.

As for having small intestine down there, some time ago, I looked at some medical procedure document regarding removal of colon and perineal space, and the current practice is to allow bowel to occupy the lower perineal cavity, as it prevents infection and fluid buildup and stuff.

I just think that it's to do with having a largish hernia for at least a year, having a fair-sized piece of my gut and tissue living outside my abdominal cavity, has changed my physiology around there, and pushing it all back in, and putting a strong mesh there, has meant that the lower part of my body, i.e., my rectal area, is being stretched more by the stuff that I have had shoved back in. And it's pressing on a nerve there. Or maybe there is a growth in that area which is putting some pressure on that area.

Either that or I have got a nice little incisional hernia there, which I hope I haven't. I have no obvious bulging there, it's just when I am active and doing stuff, it feels alternating between being pulled and sore and itchy, and pulled and feeling cold.

Again, maybe my original specialist can shed light on it, as the general surgeon who fixed my groin hernia and sent me home the same day with no follow-up doesn't want to know.

Though I may go back to him with what my specialist says.

coral
Nurse

Hello Telecaster,

Sorry to read about your discomfort.

Ice packs down there might help when you are resting and home alone perhaps?
I reckon it would be a good idea to phone your local stoma nurse - she is sure to have heard of this happening before and will be able to offer good advice. There will be one attached to the local District General Hospital (colo-rectal dept) if you don't already have a link name/phone number from your past medical admissions.
You can refer yourself to her, you don't need to go through a GP.

Telecaster

I contacted my local stoma nurse who suggested that I go back to my original specialist surgeon, as the issue I have is not to do with my stoma itself, but to do with the scar tissue from the original panproctocolectomy I had 12 years ago. Which has never troubled me before.



So I am seeing my original surgeon (who luckily is still practicing at the same hospital) next week.



He'll know more about scar tissue, and the procedure he used on me all those years ago, and whether he can give me any pointers for either managing this problem or getting rid of it.



I just hope it's not a hernia down there.......

Telecaster
Well, I initially saw a member of his team, who examined me, prodded me in places which made me wince, and suggested that one thing could be that as I get older, my scar tissue is stretching or not at a different rate to the rest of my skin down there, which in an area like that with lots of nerve endings, will make things feel sore. He said I had a small flap of skin which was becoming a bit irritated, and was being pulled and stretched also by being active and stuff.

I then told him that I felt downward pressure there sometimes, and felt wind and stuff gurgling against that area sometimes, and he then checked me for a hernia in that area. Made me cough a few times, and said that he couldn't feel anything.

He then went and got my original consultant, who then examined me in the same way, checked for a hernia etc, but then said that although he couldn't feel anything, he would refer me for an MRI scan, which he said would show any hernia, or anything else. When I asked him how likely a hernia was down there, he said it was unlikely, but it was worth checking. I then asked him what else it could be, and he said that an MRI scan would eliminate it being something more sinister, as itching is sometimes a sign of things like skin cancer or a tumor. Which has now got me worried I can tell you.

Then they just left me, in the hands of a nurse who was booking the MRI scan!!!

So I called them back, and asked how I should be managing this problem for the time being as the scan is 3 weeks away, and then the results of that would probably take a while after that.

He said I shouldn't put any creams on it like I have been doing, keep it all dry, at the most use nappy rash cream, and just get on with life as normal!

So I am slightly the wiser (but not much) and in some ways more concerned. And have another few weeks of waiting, discomfort and worrying.

Not a good summer for me I can tell you.

Started with a simple groin hernia and turned into an itchy, sore pain in the backside!!!
!-- / message --
Telecaster

MRI scan tomorrow.

Maybe they can get to the "bottom" of this?

They are being instructed to look out for signs of a hernia or for growths down there.

Maybe I can ask the radiographer whether they can see anything obvious tomorrow?

Doing odd things now.

When I am sitting down, wind drums against my rectal scar area or my lower back, then drums against my hernia repair site, just above and to the left of my groin, then comes out of my stoma a few seconds later. When I am lying down, wind drums against my spine.

My hernia repair site often feels under pressure, feels hot and sore even, especially after a long day or after sitting for a long time.

Maybe my body doesn't like the mesh that's in there. Maybe my lower abdomen or pelvis is getting irritated, and pressure builds up over the day?

Wakes me up at night too. I wake up, my guts wake up, and it's all systems go, with gurgling, wind drumming against all parts of my pelvic area.

Keeps me awake for hours too.

Telecaster

MRI scan came up with virtually nothing.

No hernia, no growths, nothing that they were worried about.

Report does mention a trace of fluid in there, but basically everything looks normal apparently.

So the itch, the cold feeling, the pressure goes on though.

I am waiting to have another appointment with my specialist, but in the meantime my GP is pretty convinced that it is a nerve-related problem, that I have a nerve being stimulated by abdominal pressure, that maybe a piece of my ileum is triggering a nerve in my back or my perineum and that that is making me have these sensations which range from it feeling cold when I am sat down, to feeling itchy and sore when stood up.

She has put me on some low dosage nerve pills, but there is some mention on my specialist's report as them trying some "steroid injections"

Trying to get on with things, at least I have it confirmed that I am not ill (even though this discomfort is making me feel ill sometimes)

Telecaster

Well, I saw my original colorectal surgeon yesterday.

He confirmed that it was not a hernia. No tumor, that the pressure feelings and the soreness were a nerve in my rectal area being stimulated and even that it was unlikely to be connected to the recent surgery I had. Or that I had a nerve in my lower back that was being stimulated by abdominal pressure that was sending the "wrong" nerve signals to my brain.

Unfortunately, due to the vagaries of our NHS, although he wanted to refer me to a "pain team" at my local hospital, he himself couldn't and he would have to write to my GP so that she could do it. So another two weeks of waiting and discomfort beckon.

He was talking about "nerve blocks" and "corticosteroid injections" and even said a name for it: Pudendal Neuralgia or Levator Ani Syndrome.

So although I am not "ill" in the usual sense of the word, I have daily constant discomfort and the prospect of some painful and risky treatment.

Last night, I was stood up all night at a band practice, and it was twinging, itching, and pressure down there all evening. Put me off my playing, I can tell you.

Not pleasant at all, and it is getting me very down, I can tell you.

10mg of nerve pills doesn't do much either.

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