This is my first time posting here after browsing a little while, so I hope it’s ok that I post. I’m feeling at my wit’s end and don’t quite know what to do, so any thoughts at all would be very much appreciated. I’ll try to keep it brief, but basically I have had constipation for about 6 ½ years now. It started very suddenly (potentially after being on iron supplements) and since then I have been taking Dulcolax daily. I have been back and forth to the GP and then a GI specialist at the hospital constantly. Until I moved to a new town (about 3 yrs ago) I was just getting fobbed off, told it’s all in my head, I’m too young to have anything wrong with me, it’s my fault, or simply eat some kiwis (I kid you not!). I’m now 26, going on 27, and the past year or two I’ve had a few answers. Not one GP or specialist has made any suggestions of what’s wrong or offered to send me for tests I need, however. I have had to research, tell them what I think’s wrong and push to get tests or treatment. So, in a nutshell:
- Constipation for 6 ½ years, sudden onset. Then sudden weight lost (down to 4.5 stone), unexplained. Quick decline in energy. I’ve since put weight on and am now 7 ½ stone. No improvement in any symptoms. Feel full, uncomfortable, pain. No bowl movement at all if no laxative. Dulcolax works but others, including newer ones like Prucalopride, don’t seem to work. On Dulcolax it can be unpredictable at times, very much liquid form usually, mucus (sorry for the grim details).. I’ve tried all dietary changes, spent a fortune on supplements and treatments, but nothing has helped.
- Frequent urination. There’s almost constant pressure on my bladder and I can wee every half an hour. Sometimes I can’t go properly, so I stand up and a minute later I need to go. Incredibly frustrating!
- Pernicious Anaemia – injection every 3 months for just over 2 years now. I also have iron deficiency anaemia but have only recently started on supplements again once a week due to my experience last time. I also have folic deficiency.
- Amenorrhea – no periods since all of this started. I’ve had periods when on the pill but no periods at all when not on it (ie. I’ve been off the pill the last 2 years and no period). GP said I was a ‘conundrum’ and left it at that. After pushing, I’ve managed to get a gynae appointment for April.
- Hypothyroidism – I had to push for the tests, then argue them, then push for treatment. Now on Levothyroxine 50mg, upped to 75 every other day. No noticeable improvement in energy though the tingling, such as in my hands, seems to have stopped, and I’m not crying in exhaustion after work every day (though I still feel like that!)
Recent tests over the last couple of months are more interesting. I did say I thought I had a prolapse all those years ago and was told ‘you’re fine, stop trying to find problems where there aren’t any’…
- Sitzmarker transit study – Did not go to the loo for the whole duration so all marks still there. Markers mixed up but most are all down the left side of the colon. Suggests possible slow transit (perhaps from all the years of laxatives? Or perhaps because I was full before the study started so they had no where to go?).
- Defacating Proctogram – I had to ask several times for this. They told me on the day in Oxford JR I had a rectocele and full rectal prolapse, but would have to look at it further to tell me any more. He said it wasn’t surprising I was constipated, in pain or having such issues with weeing. My GI specialist saw me yesterday for the results. He said it was a rectocele (I think he mentioned 2.5 something…?), rectal prolapse and intussusception grade 5.
I was caught off guard yesterday as I wasn’t expecting the latter about intussusception, nor the Sitzmarker results. When he emailed me about the Sitzmarker results he had told me all of the markers were right down the bottom of the colon, which they were not! He had suggested biofeedback, which I said no to and asked for the proctogram because I thought I had a prolapse, so I’m glad I stuck to my guns on that one. He is referring me to ‘his colorectal surgeon’. I had wanted to ask to be referred to the Oxford Pelvic Floor Clinic as I’ve lost all faith in this GI and my GP but I wasn’t expecting the results I got, and not knowing much about intussusception I didn’t know what to say. GI tried numerous times to ‘sell’ me some of the latest laxatives and suppositories I could be a guinea pig for and I was nearly in tears trying to get him to understand the prolapse/rectoele etc need to be dealt with and that I don’t want any more darned pills that don’t work.
I don’t know what I’m looking for. I guess I’ve spent so long trying to keep all to myself and it’s cost me a lot. I have no friends, social life, I left my relationship, and now I’m really struggling in my job (I’m an advice and support worker).
I’m getting impatient. It’s been long enough but now it will be more weeks or months to see the GI’s surgeon, probably be referred to someone else as he doesn’t know anything, and so on… I guess I’m wondering whether anyone has been to Oxford Pelvic Floor Clinic, how long you waited, or whether going private may be an option (potentially a very expensive one?). I want to think this could all be explained by the rectocele, prolapse and intussusception, and that a laparoscopic ventral rectopexy could solve the issues, followed by months of retraining my bowel due to having spent years on laxatives. Or perhaps that’s wishful thinking? I’m just so fed up, disheartened, shattered and now at a loss for where to go from here.
Sorry for the long rant. If anyone manages to read it all, then I apologise. Thanks in advance if anyone does have any thoughts as they would be very much appreciated.