by Deleted User 4175 » 26 Oct 2015, 08:40
I am posting this even though I have never seen anyone on this forum, or indeed when I google search this problem, to have this unusual condition.
The comfort we all feel when we find somebody else battling the same problem is a release, a person to relate to and offer advise and that "I know, you are not alone" reassurance. It helps us doesn't it? When we lose faith in our CRS or drs who don't have all the answers I have come to realise.
A year ago I had an LIS at the same time as two fissurectomies. My recovery was slow but I knew something wasn't right. When sitting down or squatting down I would feel sharp twinges in the right hand side of my rectum. At my 6 week check up I mentioned this to my CRS who said I should be completely healed and "we all have little twinges from time to time". I began avoiding sitting down for fear of this feeling which made me feel venerable to further tearing. Then two months after the LIS I sat down one day and can only describe the feeling of intense, searing pain ripping up the right hand side of my rectum. I thought I had torn inside rectum. EUA confirmed no fissures or tearing. I was referred to a pain management specialist who put me on Gabapentin which didn't help. I suffered weeks of agony and hopelessness as no CRS (I have seen three), 1 gynae, 1 PF physio, dermatologist couldn't find the reason for the pain.
Eventually my CRS sent me for an ultrasound scan. Two things showed up. High resting pressures and a thin, stretched sphincter muscle on my right side, I believe the result of the "sitting" injury. There was no sign of a parting of the internal sphincter muscle showing on scan in accordance with the LIS. Conclusion, it was a very conservative division.
My resting pressures were dealt with Botox (two rounds) and a thrombosed peri-anal vein removed but the constant pain I live with from the damaged sphincter never has and as far as I know cannot be addressed. It isn't really discussed only to say it is permanent. I live a very much reduced quality of life now. I am 49. I was fit, walked everywhere. I cannot drive, sit or walk without pain and making the pain and muscle worse. No one knows how to help me. I have found some coping strategies, ie. not doing very much and taking a 5mg dose of Diazepam twice a week which helps on a few levels. I feel there is no hope, I feel sad and I morn my old self. I feel hopeless and an isolated case. I have never heard of anyone else who has suffered with this chronic condition. I have no forward care from CRS, it is all down to me to just learn what helps and what doesn't.
I apologise for the long, rambling essay. I thought it might be worth a shot posting on here where I have received such good advise and support for other colorectal issues I suffer from. This is a fantastic forum, without which I would probably have given up. I wonder how many CRS's read this. This is where you hear the real issues relating to our problems and get real answers and help. We are not all text book cases.