Hi,
It saddens me to hear that someone else is suffering the way i and my children did. Apologies for the late response but i was told about this post from a friend and have joined mumsnet just to respond.
You are not going mad, trust your instincts as a mum and dont give up until you have answers.
i dont know if my story will help but if it helps just a little then it has been worth me writing this. here is a short summary of what happened to us.
Both my children now 8 and 5 suffered from distended stomachs and constant pain, mainly in the bottom but also stomach region. I had a terrible fight on my hands and often thought i was going mad as did many around me. Once referred to the pediatric dept at the local hospital with my eldest and they prescribed movicol helped to clear her out, but in large doses over a week and only after more than a year of pain and distension in her stomach and bottom. did she seem a bit better. However, even after being cleared out she was still in pain and distended. The pediatric doc then said that as she had been so distended it would take a while to get her back to normal bowel movements and to encourage her on the toilet morning and night to get a normal routine. We also tried her on gluten free diet to see if this helped also. She did start to have a bowel movement everyday but still had pain to which the pediatrician suggested was all in her head and even offered to refer me to CAMS. I nearly agreed as thought nothing else to try but per chance had a conversation with the head of the hearing unit at her school about my daughters rather bendy legs and very wide feet. She suggested we saw the occupational therapist at school who after 5 mins diagnosed my daughter with severe hypermobility mainly in her legs, hips and ankles which she said could be affecting her bowels also. With this i went back to the pediatrician who said this would not be the case and that i should still refer her to CAMS as they thought the pain was psychological. At this point i just knew in my gut that this was not the case and by hook or by crook i was going to get her out of pain. I insisted that she be referred to Great Ormond street as i had also been told of the possibility of hirschsprung disease linked to her cause of deafness. its most often diagnosed at birth but can be later.
Once at great ormond street gastro dept i felt completely listened to and not treated like a mad woman. they could see all her symptoms and said that her hyper mobility was definitely a part of it. They noted that she probably had a slow moving bowel due to the hypermobility and that this had not been helped by being distended and full of poo for so long. They suggested we be refer to our local physiotherapy team and stay on 2 movicol, 1in am and 1 in pm to keep her bowels moving regularly. They did not think it was hirschsprung. i also managed to get her exercise done at school thru the occupational therapist. With the help of this i also got her some insoles to help stop her over rotating at the hips and ankles. Thankfully things started to improve and we haven't looked back since with her. she still has some pain some days which she manages and sometimes i up the dosage for a day or two to help clear her out. the older she has become and more sports she is doing to strengthen her stomach and legs is really helping.
All this was along fight with nearly every doctor i met except at great ormond street.
Since then my youngest now 5 started to show similar symptoms and although thinking i had the knowledge and previous experience to deal more quickly and appropriately with it, i experienced the same fight to get her to great ormond street. Unfortunately we have never been able to clear her out, i have been to a and e a few times early on and even refused to leave until taken seriously and they had spoken to Great ormond street to confirm my eldest child experience. We had a week in hospital trying to clear her out of clean prep which was the most horrible time ever and nearly killed her despite all my protest and insistence that is was actual a problem in the bowel that did not allow her to go poo. Luckily a doctor finally saw what i had been saying all along and stopped the clean prep which she kept throwing up as it could not go through the bowel. I finally got a referral to Great ormond street for her where i then tried the different diets they suggested and at one point she was on a no gluten, no diary, no egg diet with only a little fibre. Eventually i insisted with them and they did exploratory surgery and tested for hirschsprung. they found nothing but a very distended rectum and lower bowel. then i had to wait as due to her age she wasn't allowed another couple of tests due to the risks as she was too young. but i didnt give up and kept pushing as she was still suffering tremendously and nothing worked and no pain killer touched or eased it. Eventually they agreed to do a pressure test in her rectum, Funnily enough the day of the procedure they tried to give her a suppository enema but could not as she was full of poo and they asked if i could try and encourage her to go to toilet. I laughed and cried at the same time explaining that she couldn't and that was the very reason we were here in the first place! As a result of this test she was diagnosed with involuntary spasms in her internal sphincter and that this was a very painful thing and only opiates would help and she was too young to have them. Although they did offer her botox injections in this area and believed it should work first or second time round. I had a fight to get her booked in quickly as even though told it should get her out of pain in 3-4 days i still had to push and fight for over 4 months to get a date for the procedure. once she had the procedure within 2 days she no longer needed her dummy as a comforter through the day and within a week and half was pooing every 2-3 days without pain and even going by herself. Everyone noted the remarkable change in her character and for the first time in 3 years she was pain free. unfortunately she has had to have the procedure 4 times since over the past 2 years and this last time has had no effect. my next options are for her to live with it a bit longer to see if she either grows out of it or manages the pain herself or to go via a more extensive surgery route which may or may not end with her having a bag fitted. Not happy with this so as she also has hypermobility but due to age was not allowed insoles til 5.i am now fighting to get her an appointment to get insoles. she does gymnastics, dancing and swimming (difficult when in pain) but to help build her strength in her stomach and bowels. and i hope in time with insoles she will be like her sister and only suffer now and then for very short amounts of time.
Apologies for the long winded story and not sure my story helps you but hope it does in some small way. Everything seems a fight but it is worth it and there are others out there you are not alone. Trust your gut as a mum, it hasn't steered me wrong yet.
Thinking of you and hoping your daughter is out of pain soon
x