Sorry to hear of the struggle you’ve had with diagnosis. I don’t know a lot about Marfans syndrome other than that the symptoms of EDS and Marfans sometimes overlap as they are both multisystem disorders of connective tissue.

I don’t suffer from POTS although my resting heart rate can be abnormally high at times and tends to cause alarm whenever it’s noted in hospital. I just tell them that it’s normal for me but it’s never been properly investigated.

As regards the MC… the medication that works best for me is Asacolon 800mg bd. This keeps the colitis well-controlled most of the time although certain foods, particularly whole wheat breads, can trigger an acute episode. My colitis is also antibiotic associated which greatly limits the range of antibiotics that can be prescribed. I require oral steroids (Enterocort) as well when I get a severe flare-up.

Several attempts have been made to reduce the dosage of medication required but each time it’s been tried, it’s exacerbated the colitis so I’m constantly maintained on Asacolon. If the medication is reduced, the symptoms of intestinal pain and diarrhoea slowly recur until it reaches the point where you’d prefer to avoid eating as it causes so much discomfort. That’s when I’m thankful that my symptoms can be so well-controlled on medication.

I think I was 33 before my EDS was diagnosed (I’m nearly 55 now!). My joint pain has got a lot worse in recent years but if I’m careful to pace myself and top-up with pain relief 3-4 times x 24 hours, I can live a fairly normal existence. I’m lucky in that regard as the other EDS’ers I’ve come across online, certainly do not get off so lightly.

Do you have problems with healing? My hands and feet seem to be worst in this respect… if I get a tiny burn on the wrist (eg. when taking something out of a hot oven), it can take weeks to heal and goes through several painful stages in the process. I think this explains why I’m so prone to infections in my head and to developing excessive scar tissue following surgery.

My approach to life tends to be… ‘try it and see’. If it works out… ‘great!’, if it doesn’t… ‘so be it, try something else!’

Thanks for getting back in touch!

_Kelly

I just left you a comment on ‘A Rare Bird’.

It’s all relative really. Makes you appreciate the good times for sure.

I’d love to hear more about your EDS and how it affects your life. Feel free to email me (in confidence) anytime or leave a comment here if your prefer.

Thanks for leaving me a comment. It’s always good to hear from other EDS’rs and you’re the first one I’ve heard from who has MC as well.

It’s now almost 3 years since I was diagnosed with microscopic colitis and I remain on a relatively high dose of Asacolon to keep the symptoms under control. I’ve also had steroids (Enterocort) added a couple of times when the MC has relapsed and been hard to control.

Having benefitted greatly from the treatment for MC (I was 52 when diagnosed), I now realise what I’d been putting up with for years. Hindsight is a fine thing!

There’s no need to worry about me, honestly. As you say, I’m in very good hands and only have to shout ‘help’ whenever it’s needed. I’ve felt a great deal better since the implant was removed and now it’s simply a case of keeping an eye on my newly healed septum. Fingers crossed please that it doesn’t break down again!

Hope the sun is shining on you and Roy!

I just knew that you were having troubles. Thank God you seem to have a wonderful medical staff who really care about you.

I have been thinking of you so much lately and I am sorry that the MRSA has returned. You are very brave and cheerful and deserve so very much to feel better.

I am thinking of you and remembering you in my prayers every day..

My own concern having had so many recurrences of MRSA, is that when I’m well, I now suspect that MRSA is dormant rather than eradicated from my system. I’ve a lot of joint pain due to having connective tissue problems and the likelihood is that I’ll require some joint replacement surgery in years to come.

I personally know two people who had hip replacement surgery in the past which failed due to MRSA infection of the hip joint. The prosthetic hip had to be removed leaving each person confined to a wheelchair for the rest of their lives.

MRSA has already cost me dearly. I don’t want to allow it any more leeway!

I admit to feeling somewhat unsettled by this recent set-back. The headaches and infection were one thing but the implications of MRSA returning are hard to swallow. Having had 4 separate recurrences since I was initially diagnosed in 2005, I’m left wondering where/when it’ll all end. As a result of all the IV treatment I’ve had over the years (approx 25 years), I’ve developed acute allergic reactions to many antibiotics and so treatment options are limited. Having said that, one’s sensitivity to drugs is constantly changing so what might not work on one occasion, may have changed by the next.

I would like to see a microbiologist to discuss my drug sensitivities but this service is not available to me except when I’m acutely ill as an in-patient.

The pain in my head is well-controlled with various forms of pain relief so I can get on with normal living. I’m not scared or fed-up, just a little apprehensive as to what the future holds.

You’re very kind to have me in your thoughts when I know you’ve more than enough problems of your own to deal with on a daily basis. Take care. S.