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Constipation: Prolapse, rectocele & intussusception?

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 

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13 Replies

  • tau52340 cazkins

    No words can describe the painful ordeal you have been going through.  Although I am oblivious to most of the terms used by you, I can very well say that the issue is totally related toyour  pelvic floor. I see that you have peeing trouble and that is only caused when the pelvic floor rests on the bladder.  This puts a lot of pressure on the bladder and the need to pee often becomes inevitable. Additionally, you seem to know the cause of this ordeal - iron supplements.  Iron & calcium can constipate a lot, if food that softens the stool are not simultaneously consumed.  Dulcolax wasn't the right solution but now it's too late to repair the damage.  All I can say is up your intake on muscle (esp. your pelvic floor muscles) building foods such as Salmon or Sweet Potatoes (these do not constipate but soften stools).  You could also eat half-cooked spinach with brown rice that could help in the area of iron deficiency.  I think it is always  better to manage any vitamin deficiency with the help of food instead of supplements.  This way our organs (esp. Kidneys) do not have to work harder to throw the excess dose out.  Even consuming food with lots of Vit C not only will help in the area of iron absorption but also  help in inducing the elimination process naturally.  Instead of dulcolax, try taking magnesium (oxide) supplement 250 mg x either 1 or 2 a day after dinner.  See if that helps. Either consume flaxseed oil or olive oil (oral) to lubricate the guts as straining will cause further damage to the pelvic floor. Look into Tai Chi exercises too as I think probably is the only natural solution without surgery.  I am sorry for not being much of a help here but  I think you have nailed the solution to your problem already. Hope it is successful and final.  All the best!!!

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    • cazkins tau52340

      Thank you very much for the reply tau52340 and for actually reading my ramblings. It's been a stressful time, and even though I'm glad to have found a potential 'cause' of the problems for the past 6 1/2 yrs, it's not knowing what to do next that's concerning. I will certainly look in to some of the things you've suggested, and exercises like Tai Chi that may help. Unfortunately, for some unknown reason, my body doesn't seem to absorb nutrients and such well so foods with Iron and B12 do no good (hence injections). Kind of makes changes to my diet feel useless, even though I think I eat quite well anyway. After a lot of deliberation yesterday, I have asked for a private referral to the Oxford Pelvic Floor Centre. It's a lot of money for a consultation but at least they should know what they're talking about and it won't be a 5 month wait to be seen. Thanks again.

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  • saffy2015 cazkins

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  • debbie58553 cazkins

    Hi Wow you are also going through it as i am. Last year i started to have odd sensations below like my womens bits was been pushed down from the top, i ended up in agony and was rushed to hospital. After tests they told me i was very constipated, i didnt feel like i was. After discharging me i had horrific pain upinside my bowel, after breaking down repeatedly to my gp they took me back in hopsital to be told i had an anal fissure..............i knew i didn't! fast forward, 32 days later and totally lost my sanity in agony with no treatment, they eventually told me i have a cyctocele, rectocele & bowel intersusseption and that i have bruising and inflammation in my bowel, they gave me steroid supposotories. After weeks of agony and a mental breakdown i eventually got better but this was after having a full colonoscopy and bloods etc by BUPA, each person looked at me like i was going mad as apparantly what is wrong with me shouldn't cause the intense pain i have, it feels on fire and so sore like i have been cut wide open. They then told me i have diverticular disease so maybe they pouches ar infected, antibiotics hasn't improved the pain. I went 4 months sympton free but it as now returned and i am beside myself with anxiety. I have been using steroid supposortories but worried sick that it isnt going. Sometimes i feel like my bowel is been dragged through to the top of my bum. I totally feel for you as the pain is bad enough but to be looked at like your in the head is equally horrible. I am seeing the BUPA consultant on Monday in which i am going to plead with her to help me. I am so desperate just wnat my life back, to be pain free and happy again. I am terrified i will end up with a bag but you know what if it cures the pain and symptoms i will give it serious consideration.

    Hope we both get a resolution and get well

    Debbie

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    • cazkins debbie58553

      Hi Debbie,

      ​Thank you for your reply, and I'm so sorry to hear the struggles you've been going through.

      ​Whilst I'm not going through exactly the same, I understand the anxiety and pain and getting so frustrated with it all, especially when so-called experts don't seem to have a clue & you're made to feel like it's all in your head.

      ​It's interesting that you didn't feel constipated when you started getting the pains. Despite having rectocele, intussusception..were you able to have a BM, but perhaps not enough so that over time your system got overloaded?

      ​I've actually had the LVMR, it was a nightmare and I've had complications. I've now had more surgery. Still constipated, in pain, distended stomach like you wouldn't believe, it's miserable.

      ​Was that the first colonscopy you had done when the diagnosed you with diverticular disease? I would imagine there are more things to do to help you other than the suppositories, so try not to let them fob you off on Monday and I'll keep my fingers crossed they listen to you and find something to help. Keep me updated..?

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    • Mandahugs debbie58553

      Hi Debbie

      I've had similar problems in the past. I was treated like I was imagining things by GP in Uk and just told to eat more fibre. They were so condescending. I had a full rectal prolapse, but was too inhibited to bear down enough to push it out ( basically it's your whole rectum turned inside out and it comes out as a round bulge a bit smaller than a tennis ball). For some people it comes out and won't go back in, but I was still able to push mine back. I moved to Switzerland, suffered a burst appendix not long after. The ER Doctor was trying to diagnose whilst I clawed at the bed in pain and said it must be either the appendix or a diverticular pouch that had burst. The pain was the worst I have ever experienced ( and I've given birth twice) . So I know how bad your pain must have been Debbie and I can't believe it took them so long to figure it out) I don't know much about diverticular disease, but I think it's important to eat easily digested foods and keep things moving so nothing gets left in a pouch that can start an infection. I think basically a diverticular pouch and an appendix behave in a similar way - the danger being that faeces gets trapped in there and an infection can start. If it's not treated then it will swell and eventually burst. The good thing is that now you know what you have, you can start researching and find out the best things you can do for it. Also try to locate a good consultant and you may have to break down doors to get to see him or her. Don't let anybody fob you off. 

      I'm really glad you're seeing someone from BUPA. I hope they're more helpful than the NHS.

      I wish you all the luck in the world. I'm a very anxious person too , so I know how it preys on your mind. Try not to think about it anymore than you have to and try to concentrate on doing whatever you need to do "today" to help your condition and take care of yourself, rather than letting your imagination project into the future. (Note to self- Need to follow own advice!)

      Hugs

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  • Mandahugs cazkins

    Dear Caz

    As you will see from my post to Debbie, I also had a full rectal prolapse. When my appendix burst since our move to Switzerland and after they'd given me morphine so I could speak - I asked the surgeon if he could look at the prolapse while he was "in there" and maybe fix that as well. He said he'd look, but he couldn't do both operations in one session. 

    I ended up having the same operation as you I think - it was such a mouthful to say I can't remember the exact term. Basically he removed a section of my colon that was not in a very good condition and then rejoined it (he had a lot of trouble there, because they use a stapler, but the walls of my colon were too thick so he had go back to using stitches). Then he pulled the rectum up and stitched it to some part of the bone to prevent it from sagging down again. Thankfully the stitching held, but like you I was in quite a lot of pain for sometime after, plus the distension, because air gets in. The first two weeks were the worst and then when I went home defecating was pretty painful for a while longer, but I was feeling better otherwise. It took about 2 months for all the discomfort to go,and the distended abdomen returned to normal. Of course it was gradually improving over the 2 months so, you don't have a whole 2 months more of awfulness ahead. The result was very good and things were definitely much better.  Unfortunately further on in time I developed a Rectocele, enterocele and chronic anal fissure, but I don't think any of that was related to the operation, they were just a continuation of the original situation, which was IBS-C and straining too much and apparently giving birth can contribute to it also. So the best of luck to you too Caz and if you're not already doing them pelvic floor exercises are supposed to help things descending any further.

    I should be doing them too - sigh! May the doctors get their act together one day soon!

    Hugs

     

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    • cazkins Mandahugs

      Hi Mangahugs,

      Thanks for your reply, it's much appreciated! I'm sorry to hear you've had a rough time of it too. It sounds like you've had a 'resection', which I didn't really think was the 'done' thing now (seems they prefer to remove the whole colon as the remaining can often then fail to work and need to be removed) though that won't always be the case. How are you finding it in terms of relieving constipation? I do hope that all of the pain and yuck surgery and recovery has helped you - it's rotten feeling so awful all of the time, and not knowing what you can do to help, when nothing seems to work, is very frustrating. It's been suggested to me to consider a temp stoma followed by a colectomy, but obviously pelvic floor problems that remain are a bit of a concern. Did you have to go back for further surgery for the rectocele, enterocele and fissure? I wish you all the best and hope that you're doing better symptom-wise too! x

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  • john42721 cazkins

    Dude you just described my life situation. Im on 200 much for hypo. Sorry if this is a little scrambled. I've been up

    All night trying a bowel. 18 months ago oh ad been making a noticeable bitch about constipation. I understand when they ask about water n fruit. Thanks dr obvious. Needless to say I've been through a lot of doctors. Well my colonoscopy came back fine a year ago November. So I just managed with tons of miralax and ducolax. Well that quit working and the holiday of Christmas was near and I needed a specialist. He claimed I had ibs-c prescribes linzess. I got relief it it was to in predictable. I don't have ibs like you said he wanted to push pills I was happy at first to get relief So fast forward to now I had the site market and I went four days without movement and I had to get some super laxitives to relieve the pressure.

    Here's where I'm at today I just had the defacatography test. I've lost control of involuntary muscles and my sphincter or the last muse is too strong. Also I've filmed myself trying to pass. Ha ha I'm serious and what I saw shocked me. I knew my stool was sticking in my rectim so times sticking out. My intestines were protruding. I'm. Currently on disability because of this and I believe this is a prolapse the only way I can have a movement is if I'm liquified. So I'm getting another test where they measure the pressure of the muscles what's working and not working along with what degree. This I'm told is to determine what type of surgery. Now my gi hasn't told me I have prolapse because I just had the test but the doctor I talked to for the minute they gave me kind of said it. I see it on my film. I've got a question. When you fart does it always feel tight. I have no change in my farts. Good luck

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  • christine58244 cazkins

    hi cazkins i sympathise with you i have a rectocele and an intussception trapping anterior and have been constipated and have to take laxatives every day duculax and senna obviously i never have a normal bowel movement comes out like prorridge i have had a proctogram and due to have a second proctogram the first consultant did not want to help me at all but just left me i had to fight to get a second opinion so hoping someone will help me, i cant believe the consultant did not want to help me even though i have a 3 cm rectocele and an intussception it is unbelieveable how you have to fight to get help hope you get your appointments i have been waiting 8 months for appointments its been exhausting and trying to manage my rectocele has been very difficult

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    • cazkins christine58244

      Hi Christine,

      It's so disheartening and frustrating to hear how you haven't been helped and are having to keep fighting for someone to listen and to help you. I went through years of that, it's truly miserable. I hope the second proctogram is helpful (though I assume that would only be confirming the rectocele and intussusception) and will get a consultant to take up your case and go through options going forward. Hang in there, it's tough but things can and will change, it's worth fighting for.xx

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  • christine58244 cazkins

    Hi Caz how are you getting on sounds like you have the same thing i have rectocele with intussception and cant go to the toilet, i have been fobbed off too and its been 9 months now and i am still trying to sort it out having a proctogram done next week had one before but they didnt do anything but i was referred for a second opinion seems noone wants to help, i have been on laxatives for 9 months now so i know how miserable it all is, are you getting some treatment now i am hoping i will get some help soon

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  • lorna13524 cazkins

    Hi there

    Sorry to hear you have been so mistreated. I'm just wondering if they fixed your rectocele.

    I've gone through a similar thing for 3 years. One Dr even said "I am doing this to myself" because I was crying & frustrated before they found the rectocele.

    I really hope you got fixed up & would love to know how you are now.

    Thankyou for sharing, Kind Regards Lorna.

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    • cazkins lorna13524

      Hi Lorna,

      Unfortunately my last message in reply to Christine was deleted for some reason, I'm not sure why. Unfortunately my rectum was basically not functioning after the rectopexy and a stoma was my last option, so I am now getting to grips with that. It's all been more than a little traumatic I must admit! I still have a rectocele but with the stoma and nothing else working with my bum (sorry to be so blatant!) this and the mesh are remaining as they are. The mesh has caused problems but I've been told it's too dangerous to remove. At least the constipation angle is not an issue with an ileostomy (large bowel has also been removed). How are you doing at the moment, are you still struggling with pelvic floor/digestive symptoms? xx

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