Constipation: Prolapse, rectocele & intussusception?
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Hi everyone,
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.
Caz
0 likes, 20 replies
samantha93475 cazkins
Posted
I can strongly sympathies with you as I am going through the exact same thing .
I have had abdominal pain so severe at times couldn’t walk Gp thought IBS as had constipation for years, had MRI scan done and revealed I had a anomeonmiosis disease of the whomb had a full hysterectomy 4 ago pain remained so back to IBS and now menopause to add, after battling with GP I now have had X-rays done at JR oxford and revealed small rectocele and prolapse and have been told to take duxolax daily to manage my constipation which is great when it works however have been times when they don’t and can be 2 weeks before a bowel movement. I have a slow transit too as the test u had was same as me and the pellets hadn’t moved. I’m fed up as I’m scared to be laxitives permantelt I have been taken daily for 1 year now but worried my bowel will stop working the GP says it is to retrain bowel and release pressure on the prolapse however now I have this constant urge to wee all the time even when. I’ve just been I get this pressure like I’m gunna wee myself go to the toilet nothing comes out can I ask how long have you been taken ducolax for and is it daily ?
I have hospital again 31st July as like you I can’t cope with this I’m also on FODMAP diet which helps the pain but seem now I can’t have bowel movement without laxatives xx
samantha93475
Posted
hi hun
im the same as you in every way
and have now found out i have osteopinia
i had hysterectomy at 35 now 39 -i didnt get any menopause symtoms till june last year and have suffered bad 7 months i tried different estrogen only HRT as has ovaries removed but didnt suit tablets or patches so now have a gel which is great
i have thiugh been getting dampness of knickess not sure if urine or watery discharge , gyno said no prolapse and pelvic floor good strength so i dont get it but i get this grumbling in my pelvis like where bladder is and then a spasm in urethra which then feels like wee is going to leak out its driving me crazy scan and cystocopy normal . my gyno thinks it vaginal athrophy so prescribed vagifem but after 6 weeks taking it my hair thinned all over and lost half the volume gyno said wouldnt be vagifem even though side effects was hair loss so i changed to ovestin but hair is still thinning have u had hair thinning ? i am thinking about taking progesterone as i read hair thinning is to do with imbalance to estrogen and progesterone my gyno said it woukd me no harm although i dongt need it but worried it might cause more hair loss ! -any advise please
i have also stinging in my mons pubis and this has dropped as i used to be hollow just above pubic since hysterectomy to june last year now it feels as though something has moved into the space as it sticks out my lower abdomen and mons pubis but havent gained weight - anyone else had this
plus i have IBS AND STC slow transit constipation , its tough
sarah17506 cazkins
Posted
I have the same issues you do cazkins, and it's taken 20 years to receive a proper diagnosis. Even just last month, my GP said I must have a psychological condition. It's truly disheartening (and dangerous) to know so many doctors are ignorant of these problems and make harmful suggestions, or simply refuse to investigate. I guess it's because we are so unlike the majority of people who can resolve constipation with diet. I too have had a marker test showing all markers in the colon. I have slow transit, a long tortuous colon, and now a rectocele with intersusception and global pelvic floor decent. Pain after eating can be unbearable. I've also tried every type of laxative available. The only type that 'work' is senna. No other stimulant laxatives work with my body. Yet stimulant laxatives also cause abdominal pain, and so it's a vicious cycle of pain, bloating, gas, then hard bowel motions or liquid. Nothing is just 'normal'.
I understand the effect this condition has on relationships, work, friendships - it's debilitating at times, and affects every area of your life. I too cannot sustain friendships in a social sense. Emails and calls yes, but I can't go out and socialise, especially not in the evening when my symptoms are at their worst. I have no been able to be intimate with my partner for two years, as the rectocele has caused the vaginal vault to collapse and descend, plus the constant fullness of the bowel makes me feel revolting.
After 6 years of new investigations, I have finally seen a colorectal surgeon who recommended a colectomy. He has said he cannot simply remove the colon and create and anastomosis (joining the small bowel to the rectum) due to the rectocele and intersusception. In his words my 'pelvic floor doesn't work' and the issues I have would only reoccur. I expect it might be the same for you. I am trying to adjust to the idea of having a stoma. A life changing procedure, that's irreversible, but perhaps an improvement on my current situation.
I truly empathise with you, and hope you find the help you need. We must be our own advocate and be fully informed about our condition in order to push for the right tests and intervention. Although a well-informed patient can be perceived as very threatening to some doctors (who obviously have an ego issue), so I've found it helpful to show some deference in some situations, as ridiculous as that sounds. If you don't show a doctor enough awe, they can dismiss you. I wish you the very best, and hope you find the support and best surgical solution. x
monjo cazkins
Posted
HELLO all those who have been posting on this issue,
im so glad to have found this post.
i myself am a doctor so i can confirm that i do not recall learning about slow colon in any way during med school and i have also found it to be a small world, in which only some doctors within the specialty have sufficient knowledge and understanding. As an example, the gastroenterologist i saw two years ago for constipation did a colonoscopy and told me to add NORMAFIBE. THE MOST PUZZLING PART is how he didn't notice the extremely long colon i have when he did the procedure. my new gastrenterologist whom does see patients with STC tells me unless they record the length of tubing used they often don,t!
I have had the defecogram, transit study using liquid radiotracer and manometry and a laparoscopy to fully evaluate the cause and to look forcomplications. i have rectal intersusseption grade 4; and rectocoele and a very long colon. i have experienced similarly that quality of life actually declines on the laxatives that are producing some measly sloppy effect with much pain. BUT I DO WISH TO SAY, that i do not think that the colon becomes tolerant to laxatives or that the laxatives cause the lengthening of the colon. THESE IDEAS CAME FROM initial clinical reports from people with 'chronic constipation'. i think that of these subjects there were a proportion who had STC and in these people the laxatives have an awful lot of trouble working. i think that the STC itself progresses with time and that is why the laxatives lose their effect. i think this is an important disctintion as I see far too many people blaming themselves , and trying to stop their laxatives. I WILL POST AGAIN. I HAVE BOOKED A COLECTOMY hoping for a much improved quality of life.
jennifer14656 cazkins
Posted
I feel like im going to die unless i defecate . Complete agony and the sweat pours off me . Frequently pass out to come round on the bathroom floor vomiting. I have rectocele, intusseption of bowel and diverticulosis . NHS no longer funding operation i need . Any advice appreciated. Been hospitalised, taken by amblance, and put on drip for 3 days to rest my bowels.