Health Organization for Pudendal Education

Hi every one
I have just joined this week, as I have the luxury of time on my hands(I am getting over a bunion 'op') if your wondering? Yes it hurts being semi sat up most of the time.! I am slowly learning my way around this site(already exchanged messages with two lovely people ) but here's hoping I can get my amator researching out there to anyone interested .
In 1980 after a life threatening fare up of ulcerative colitis (I was four month pregnant at the time of hospitalisation ) after several weeks, steroids, blood transfusions I gave birth to my son( he was 7months prem' )
I was then whisked into surgical where I had I ileostomy formed and my rectom removed.
I made a good recovery, opened up my first salon and got on with my life! But about twelve years ago I started to get a little bit of discomfort in the perennial area, it steadily got worse to the point that I wept with it. Well you all know how the story gos from here! First diagnosis(scar tissue) second diagnosis(perennial hernia) to horrendous surgeries after and I'm still the same. Pain clinics! (waste of time! Kindly but didn't have a clue)
But getting to the interesting bit, over the last two years, with the help of the quarterly support magazine we take I have been doing a survey of how many people who have had ostomy surjury suffer with pain on sitting and what the bowel specialist call" phanphtom bowel pain" as you know it's very real so I find that term a bit insulting.
Anyway I have had in total about(in e.mails and phone calls) thirty sufferers, the false diagnosis and fob offs are hearty braking!
But I'm sure for those of you like myself that try to analyse how we get pne ! I feel that it has to reassure any one out there worrying about trigger points and "spastic " rectoms, that the rectal nerves that are affected are the ones that are right at the top( just above where the rectom is removed in ostomy surjury)
Sorry it's been a long winded message! I am now seeing mr baranofski in London had my first two injections, sadly no improvement! But onwards and hopefully on to the next( deeper into the Alcock cannal)
Hope this has been of interest ? Any questions please just ask
Anne smith

Hi Anne, I also had UC for years, got colon cancer, had it all out with permanent ileostomy formed of course with anal closure but with sphincter muscle left in tact this was in 1999, one year later I had my liver transplant, all going well until late 2009, I got PN, I feel most of my pain in the so called phantom rectom and particularly my proctectomy scar is particularly sensitive. Currently seeing PT in Brisbane OZ for possible dysfunction of Sacral Iliac Joints, having manipulations and mobilisations of the SIJ and home exercise programme to strengthen everything to support the unhinged joints. Any thoughts and how are you now ? Best regards, Robyn K

Thanks robin
It is very interesting to find there is a significant amount of ostomys paiciants getting this problem! I have only made a study of this in England, through our quartly journal. I have collected over forty insedences and these are only people who have access to a computer! These poor people are suffering total ignorance from doctors and specialists alike, and many like myself have suffered needless surjury!
My interest naturally is to descover what is causing my pain, but secondly why does it affect our "group". There has to be common reason! Either the pudendal nerve is disturbed at the time of the surjury , or having digested an indepth study on hernias ( witch we are prone to) could that come into the aqasion! There is still a lot of complexity in this subject and I do hope that between us and these kind sharing people on this site, we can make a difference
Hope you keep well
Anne's smith

Hi Anne, Thanks for the reply, I'm not sure that mine has anything to do with my ileostomy formation or indeed the hernia op I had last Feb., 11. I was great for such a long time, ie. 12 years that it doesn't seem possible that it is related. If mine is proved to be Sacral Iliac Joint related, ie. dysfunction, then I'm wondering if mine is a repetative sort of injury. It is a bit coincidental that my left side is much more stuck than the right and when emptying my drainable pouch, I have always swung my left hip over to empty it, this is for 6 or 7 times a day or 12 years. Look it's a long shot, but I think it may make sense. After 7 weeks, I MAY just be getting some relief from the physio and exercise programme. More than fingers crossed !!! Good luck with yours and youir research, I wouild always be interested in anything you come up with. Cheers, Robyn K

Hi Robyn
Thanks for your reply! It's very intereasting your comments about how we move our bodies to empty our pouches! I have never really thought about it! I think like me , after your surjury, you just got on with it and lived your life! I think this site is majorly important in that it, at times(joins the dots) and at other times slings something new into the equation !
Many thanks for your input and I promise to keep you informed with my research.
Anne smith

Just come across this and thought I'd let you know about my experiences.

I had an ileostomy op in 1999, and another to make it permanent in 2001.

Apart from the recovery from eacjh surgery, I have had few problems, especially with the scar tissue in my rectum area.

Until the middle of last year.

I had a routine inguinal hernia operation (proves that I got back to normal life with an ileo, as I overdid things in other ways, and contributed to my hernia!!)

Barely two weeks after the operation (which still gives me some discomfort daily), I started getting feelings of pressure, itching, coldness, pain, burning etc right in my rectum area, sometimes this disappears but then seems to affect my lower back and coccyx too. Stings when I sit, though prolonged sitting seems to make it disappear. Standing gives it temporary relief, but then it comes back. Sometimes I even feel internal wind drumming against the area too, which them works in sync with my stoma.

I have had tests, scans, seen my original surgeon, gone back to my hernia surgeon. Checked out for a perineal hernia with an MRI;- Nothing. Seen a chiropractor;- no effect. Amitryptiline, did very little apart from make me feel worse elsewhere.

Funny how it kicked up a fortnight after the hernia op, yet has never bugged me before. Maybe during the surgery, something got shifted around, maybe a nerve in my groin got damaged, maybe during my recovery from my hernia op, my posture when sitting around and recovering has trapped a nerve.

All I know is that it is daily, it starts about half an hour after I get up in the morning, is relived by lying down, is worse by about teatime in the evening. Sitting down is initially soere, then numb, then cold and itchy, then after about an hour or so, it disappears. Standing gives me initial relief, but then it creeps back. Walking seems to pull something, and then a long time stood up it feels like I have a ball in my rectum region.

The only thing that gives some relief???

Alcohol!

Glad I found this site, makes me feel I'm not alone.

Right now, just getting on with my life, and living with it as best I can. Medical proffesssion seem to have washed their hands of me.

Looks like I am one of the 10% of people who end up with chronic pain as a result of routine groin hernia ops.

Hi telecaster,
Welcome to HOPE. I 'hope' that you will find some answers from this site, I'm sure that you will. It may help you determine how to tackle the problems you are facing now.
Take a look at the home pages there is absolutely loads of info there and the people on this forum are so supportive and knowledgeable too. What more could you want apart from being pelvic pain free of course.
Alcohol does it for me too. . . . . cheers! or maybe I should say bottoms up!

Helen

Hi telecaster
Thanks for posting! Sorry I was not quick to reply, as I have been researching the incidence of ostomys patients with p.n!
There is without any dought a connection! It usually starts years after surjury which seems always strange to the sufferer! I also had a hernia op to correct a perennial hernia! It did nothing to help at all! I was deverstated, plus I now know talking to several of the great people on this site that mesh insertion if anything can cause it all in all I gave up on the medical profession and started to contact threw the iliostomys association magazine , others who suffered the same, and have now got at least forty or so accounts! These people feel as lonely as I did before a friend researching her own separate problem came across p.n and contacted me. The rest is now history!
I now firmly believe that there is something that is done at the time of ostomys surjury that causes us to be susceptible! One wonders if in my case with rectom removed that it somehow takes away a piece of much needed padding(crazy thought I know) and its only after years the pudendal nerve starts to play up? But why then do some who have had colostomys with rectoms intact also suffer?
I have committed three years of my life to this subject, and I'm sad to say your symptoms sound very much like many of us! But I shall if you don't mind add you(anonamasly ) to my list as I feel that bowel surgions need to know!
P.s Helenlegs!! A glass or two of red or white, work wonders for me too!!