Hi - my daughter 26 has for many years been suffering from extreme digestive issues. She describes her descending colon as being dead, she has to massage her stomach for hours every day to get gass/ matters to pass through and is taking a lot of different laxatives. Anything she eats/drinks makes her severely bloated and nauseous (gastroparesis) and now she battles with a large anal prolapse. Anyone suffering the same please? What can be done? Removal of the colon w/stomia?
And this is on top of chronique musle/joint pain, dislocations, problems with bleeding gums, fatigue, insomnia etc. Shortly seeing Prof Aziz but not sure there is much that can be done - anyone got some advice, what to ask Prof please?
Thank you
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Cha29
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Sorry to hear your daughter is having such pain and discomfort. I cannot answer regards to paralysis and prolapse.
Has your daughter tried removing all refined carbohydrates from her diet, bread, pasta, rice, anything made with flour, cakes, crackers, sauces etc. And and tried a more plant based diet, if not maybe a 4 week trial to see if this helps might be worth a try. All of these kinds of carbohydrates make me bloated, create lots of gas and constipation.
I recently started taking a licorice root capsule to help going to the toilet, I take one capsule around 10pm and have no issues now going to the bathroom the next morning. I had been taking Senokot daily but felt this was not great, the GP then gave me Dulcolax which seemed to soften but did not help fully. The licorice root has been the best so far but I only ever take the one capsule. It causes a little stomach ache later on, hours later, but only because it is working.
Hi, I'm so sorry to hear about your daughter's problems. My daughter who is now 21 has had very similar problems too. She was diagnosed with EDS 6 yrs ago. She has issues with her joints but her main problem has been severe constipation and she also has a rectocele, anal intusseseption and prolapse. She is also under Prof Aziz. Over the years she was told to try various diets (dairy free & gluten free does help hugely ) & also was prescribed a large amount of laxatives. Unfortunately it got to the stage when eating just caused so much pain (as well as bloating ) that she ended up on a prescription liquid diet. This combined with the pain from her prolapse led to her asking for an ileostomy. She had this performed last June after we had a second opinion. Since then she has returned to eating normally and although the healing is taking a while (due to EDS) she is glad she had this done. She suffered a lot when she was younger with her body image & anorexia ( not helped by the constant bloating ) but she now feels better than she has for many years. The only problem she does still have is with the prolapse. This is much better than it was as she isn't constantly on the toilet now. However with stomas, the body still produces mucus which needs to be passed. She has to use an enema every 10 days or so - which I know is incredibly painful. We have spoken to her colorectal surgeon and there isn't an easy answer (there never is with EDS!). The only possible way forward would be to have a total proctocolectomy (which also removes the rectum & it is all sewn up). This is a major operation & also has its own problems so at the moment she is researching to help decide. It isn't something they are keen on doing at the hospital. She has a website page with her story ctwinley.wixsite.com/websit...
Thank you so much for your reply. Sorry to hear all your daughter is going through. This syndrome sadly isn’t a walk in the park. Wonder if we could meet up one day? Would like to know as much as possible before making any big decisions. We are based in West Sussex - Horsham-area.
Another question please. Is your daughter also suffering from severe muscle, joint pain?
Hi, Yes Charlotte does have joint pain - it is mainly on her knees and hips. She has seen a physio & has exercises, but they are still painful. Before she was diagnosed she was extremely sporty and always injuring herself - the EDS diagnosis explained why - she also over strained her leg muscles a couple of times so much that she was unable to walk for a few days. Now she doesn't do sports that side is better but joints are still painful. When she did her A levels she had to type as it was too painful to write for long. We'd be happy to meet up if you'd like - Charlotte is happy to come as well which might be helpful? We also live in West Sussex - in Arundel. I work at a school, but we break up at the end of March so maybe we can meet up for a coffee on Horsham sometime in April of you wish? X
I must say that your daughter is amazing! So brave to share her situation with others. Thank you for taking time to reply to my cry for help. Sincerely hope you got time to meet up in April. All the very best X
Hi, thank you - she is incredibly brave, and is now hoping to help others. I did email you yesterday about meeting up in April - did my email reach you as it's been playing up the last couple of days! (technology!) ? xx
Hey how are you I’m Matthew I’m 22 I’ve got Eds too I’ve got an ileostomy for the same reason everything I hate was causing me pain and I was spending a large amount of time on the toilet I’m also from the U.K. I’m always here if you ever need or want to talk or anything
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Wonder if we could meet up one day? Would like to know as much as possible before making any big decisions. We are based in West Sussex - Horsham-area.
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