It’s been nearly a year since I last blogged. You are probably wondering where I’ve been and what I’ve been up to.
The last year has been a tough one but it has also been filled with positive experiences, new friendships and a lot of personal reflection.
The main focus of the past year has been on my gastro-intestinal problems which have deteriated further. My large intestine/bowel has shut down completely now. There is no motility anymore which caused increasing blockages and pain. I am now very blessed to be under the care of a great GI dr who not only has a particular interest in functional GI problems but also treats a number of patients with EDS/POTS and has developed good understanding of how these conditions affect the GI system.
We have tried a number of different medications and intestinal flush systems but none of them helped. We did consider ACE surgery but have since discovered that my small intestine/small bowel and stomach are now also affected. These are causing me to be sick a lot and have problems eating. This makes surgery too risky and we need to keep my small bowel and stomach functioning as much as possible for as long as possible.
My GI dr wants me to take part in a clinical trial using Sacral Nerve Stimulation to give some motility back to my large bowel along with a new medication waiting for UK licence that is supposed to be very good for the type of abdominal pain I have.
We are running out of options so we are both hoping that the Sacral Nerve Stimulation and new pain medication will help.
2012 is becoming quite a year of change for me. I am in the process of applying to do voluntary work at my old College and I am tightening my purse strings so I can save up to study with the Open University. My aim is to study a few undergraduate modules to get me back into studying mode and then go on to study for a Masters in Art History.
This is a huge challenge but I am determined to do it. I have always wanted to go on to do a Masters degree and when I decide I want to do something I get it done. Even if that means a lot of hard work, life changes and suffering more health problems as a result of pushing myself harder.
When I first got ill 5 years ago I had no idea it would take as long as it has for me to get to the point where I could get control of my life again. The first two years were spent dealing with the grief that everyone goes through when diagnosed with an incurable condition like EDS. Once I had dealt with that and accepted my new future I then had to learn as much as I could about EDS and POTS. The knowledge I gained has played a massive role in the treatments I’ve chosen (and those I turned down) as well as helping me adjust and adapt to my new challenges. Last year focussed mainly on figuring out what I was going to do. Would I fall into a pit of despair and let my health dominate my life and dictate everything I did and didn’t do? Or would I fight and take back what I could control and find ways to deal with those I couldn’t control? I chose the latter.
I am ready to get my life back on track. To find a place in society where I can contribute and make a difference. I will no longer let my life be controlled by a condition that I have little control over.
I had to find myself again. To figure out who I was, who I had become and where I fit in.
I have started the process of fitting back into the world. I have been leading teaching sessions at bible study and currently preparing my second course for the group. I have volunteered to help with my Church’s Sunday school and youth group. My voluntary work at the college should start soon and I am hoping that it may lead to a small part time job to get be back into employment.
All I need to do now is get my brain-fogged brain working again so that it will be capable of studying the courses I am aiming to do.
At the beginning of this whole journey when I was first diagnosed I had no idea how much my life would change. There was no warning given that my life would be put on hold for so long or that it would be as hard as it was to get out of that hold.
But I am ready and I can’t wait to start this new stage of my life.
With the love and support from friends and family, and the grace of God I am ready.
You posted on a hypermobility forum about having information about vocal exercises for those with EDS.
ReplyDeleteI was recently diagnosed and would like to be able to maintain vocalizing.
Hi Helen, Iv just written a post about speech problems in EDS and how to care for the voice including exercises for you. check out the entry "Keeping Vocal". Hope this helps.
DeleteDear Carrie-- can you please tell me who your fabulous GI doctor is-- the one who KNOWS about EDS? I promise to write more soon, possibly tomorrow...I only now just stumbled upon your blog and it is like reading my own lifestory. I live in Montreal, CAnada, am nearly 32 yrs old and have been 'sick' and out of commission since 2003 (various problems that i will elaborate on later) Two weeks ago, got a clinical diagnosis for the hypermobility form of EDS. Waiting for blood test results for Type IV. No one around me (family, friends) understands any of it: they dont see it as a diagnosis, and they certainly dont accept the clinical diagnosis. So frustrating. Just spent this past year having 2 surgeries: first for rectal prolapse repair, and then for repair of a prolapsed small and large bowel segment blocking the rectum, thus preventing defecation. The surgeon, this time, also put in a porcine collagen graft, as a sling to support the rest of my pelvic floor organs, to prevent future prolapses. He re-repaired the rectal prolapse too. However, I am 4 months post-op, and have awful problems. Inittially, they were due to a partial obstruction caused by my bowel swilling shut after surgery. Ever since, I have been on an elemental diet (liquid, oral) , supplementing with homemade veggie broth and lactose-free skim milk. HAd a balloon procedure last week to open up the narrowed part of bowel: surgeon said this would fix the problem. But, while I keep attempting 'real' foods, I have been suffering so much: cant pass bowel movements and Im back to how i was pre-op: meaning, that before my second surgery, I could only evacuate stool if i used numerous FLEET enemas (sodium phosphate) each day. After which, I was so sick of food and the trouble and pain it causes me, that I would fast all day, and only eat at night. This is currently still the case, though the surgery was supposed to change all that. Okay, definately tired now, but will elaborate more tomorrow. But please let me know if you have ANY ANY ANY pearls of wisdom to offer when it comes to rectal evacuatory disorders & EDS.
ReplyDeleteCheers,
Tina
Hi Anonymous. I don't like to give out my dr's details online however I will say that I am in the UK so he won't be any use to you. I don't know of any drs in the US who specifically treat EDS patients however if you ask in any of the facebook groups for people with EDS i am sure someone will recommend somone.
DeleteThe most important things to know, and try to get your GI dr to understand, in eds is that any surgery is more risky. My GI dr won't operate on my large bowel becuase he said it will only cause more problems with my small bowel and stomach. I can see this now becuase a number of my friends have had their large bowels removed only to get very ill from small bowel and stomach deteriation. So don't let that surgean near you again until you are reffered to a GI dr who understands EDS well. Also gastroparesis is common in EDS so find a dr who understands that. Gastroparesis is when the stomach doesnt empty properly and can make eating solid food really painful and sickening. Small bowel dysmotility is also common in those of us with Large bowel motility problems so get checked out for that. the most important thing you can do is hunt around for a gi dr who knows and either understands eds or is willing to learn about it before cutting you open again. Join some of the facebook groups for eds and you will be directed to those of us on facebook who have simliar problems to you who can give you advice on drs in your area.
Hello Carrie,
ReplyDeleteWanted to say how amazing your story is and THANKYOU for sharing how you feel and your thoughts with others. your blog(2010)on what hms/eds actually is has helped me alot, also hms/eds pain blog has helped friends and family to understand my types of pains and how difficult things are having the condition!