Slow Transit and IBS-C, Chronic constipation on Pucalopride...Please help!

Hello everyone,

I'm a real newbie to pages like these but due to the nights I spend laid on my bathroom floor to soothe my cramps I've found that all your words offer me so much comfort and support.

I started with constipation when I was 17, 7 years ago. I've always just thought that it was normal to have one bowel movement every two weeks. I used to visit doctors and tried a number of different laxatives, fybergel, lactulose, senna, movicol, dulcolax etc etc and nothing helped and as a result of me been so desperate to get some relief I would strain and then got anal fissures :(

I decided I didn't want to try anymore, I was just going to carry on as I was because it was a lot easier than facing the disappointment. I started in a new relationship just under two years ago, whilst on our first holiday together it was really difficult to avoid all the luxurious eating and it was getting really difficult to disguise my 'urgencies' to pass wind or go to the toilet! I shared my problem with my boyfriend and he said he was going to make sure we did soemthing to sort it out. (I must add here that he has being so supportive from start to finish, I just feel so sorry for him putting up with me crying in the early hours and my changing moods!)

After visiting my doctors a number of times I got told to RE-TRY all the laxatives I had tried before, and then again on larger doses. Months later after these didn't work I got put on a list to see a nutritionist with possible IBS-C. Two months later before receiving a referral, I fainted twice. Severe nausea, dizziness, short of breath etc and got an emergency appointment with my doctor. He said that I had chronic constipation and was impacted, and so he referred me to a specialist at Guys and St Thomas hospital. I under went a number of tests whilst there, a number of months going back and forth and a lot of waiting lists. Lots of things were discounted and they said that I had slow transit, was hyper-mobile and that my bowels had lots of elasticity and so my stools were moving outwards and drying up rather than passing through my colon.

So after been referred back to my doctor I tried Picolax...people say this is a god send. I was reading blogs and reviews and women were saying within half an hour they were on the toilet constantly and that there was no point in getting off. Well, you can imagine I was so so so SO excited to have it. I planned a weekend off in advance, got my book ready, tablet ready to watch movies from the toilet and NOTHING. Nothing but tears of disappointment. I since returned and I have been put on Prucalopride. A strong tablet for women with chronic constipation which other laxatives fail to work for. I am on day 4. SO far I have had constant headaches, nausea, abdominal cramps and bloatedness. I cant STOP eating. I am usually a very healthy young woman, I exercise regularly, have a naughty sweet/junk food tooth now and again but nothing out of the ordinary.

But I don't know what to do.

The cramps are unbearable, I've read that people should stop taking laxatives whilst on prucalopride but without my little daily lets call them 'wet trumps' because they certainly aren't bowel movements, my tummy cramps are even worse than ever!
Last night I was up from 3:30 am, crying and in pain. I didn't know if to stand or sit. Lay or walk. Eventually the pain wore off before it was time to leave for work. I am usually such a happy, positive and confident person. But over recent months I feel so insecure, my confidence is gone, I feel embarrassed to be wearing anything other than baggy tops and dresses, I even feel less confident around my boyfriend. And although I'm told I don't look it, I feel as though I look like I'm 9 months pregnant, it feels as though I am walking around with a lead balloon in my tummy. I have these days which are becoming more often, where I get so pissed off I just pig out on everything I shouldn't be having and just think, 'I don't feel any better when I'm doing everything I should so why should I bother' and as a result of this the pounds are starting to creep on and my lack of exercising is decreasing. Some mornings I wake up and feel great and then I have a sip of water and BOOM belly is right out there again.

I'm mostly writing on here for a little support and advice. It would just be nice to talk to someone who REALLY REALLY knows what your going through and how it feels. It would be lovely to hear from anyone else who has had similar diagnoses and any advice you can offer. Does it get better? I've been told the next step for me if these don't work would be bio-feedback. Has anyone had this?

sorry you are going thru so much. i have been dealing w/ chronic constipation for my whole life (i'm 35), and I too thought it was normal for the longest time.

i finally sought treatment in january of this year. I have been put on Linzess, as well as a number of laxatives. I have been put on a low fiber, low residue diet. Don't think it's doing anything for me. Now they have me (about once a week or so) take extra laxatives and add either a bottle of magnesium citrate or drink the bowel prep stuff they use to clean you out for a colonoscopy. Although it takes hours, it usually does the trick. I have several BMs. Then it stops and I repeat the process the next week. My first GI doc said I would just have to do that for the rest of my life. F him. I switched to a new GI and he said, keep that process going while we try various treatments (like biofeedback) and have lots of tests done to understand how things are/are not working. He understands this is no way to live. He has told me that he thinks i'll end up having surgery to remove the colon, leaving me with an ileostomy. Said quality of life would improve.

However, in the past week, things have changed a lot. Suddenly, I am having upwards of 10 BMs a day and lots of pain, bloating, etc, to go with it. He doesn't know why. Right now we are acting as it it's just a freak thing and will likely return to severe constipation any day.

I personally have lots of nerve damage, the primary cause of my problems.

I did biofeedback for a few sessions in March, and just started it again (at a different hospital) yesterday. TRY IT! It is basically not painful and may help you. I was told it probably wouldn't do much for me, but that's because the nerve damage (from Spina Bifida) is so bad. It is a treatment where they use little electrodes & stuff to measure muscle contractions, etc. You can see it on a screen, which makes it easier to know when you are contracting the different muscles. Really worth trying.

Also, if you haven't had a manometry test, ask your doc about that. It measures your muscle contractions and relaxation, coordination of muscles, and how in-tact your sensation is. This will give the biofeedback person and your doc a better idea of what the muscles are doing. From that test, I learned that my muscles are really not coordinated at all, they are incredibly weak, and I have very poor sensation. That gave them a ton of info and understanding of what's happening and what needs to be worked on.

I didn't realize that pooping was so complex before this!

Believe me when I say I understand what you are going thru. You need help and deserve a much better quality of life. Please try the biofeedback. And keep talking to your GI doc about what is happening. If he/she won't help, keep calling or making appts until you get what you need. Or switch to a new doc/get another opinion.

You deserve better, and better is out there!!!