Couldn't find what you looking for?

TRY OUR SEARCH!

I thought that this post may be useful to someone just like i have been for the last 7 years with no answers but lost of problems.

i have had problems since i was 16. now at the age of 23, and after numerous tests, hospital stays and frustrations they have finally diagnosed me.

mine started with a simple gastroenteritis bug (or so i thought). after a week of having this bug, i started to get pains and feel very sick, was diagnosed with appendicitis, and had this removed eventually 2 days after chronic pain and puking blood. the surgeon said that my appendix exploded upon him cutting me open to remove it and that i should feel lucky he wasnt an hour later in doing the surgery. after this surgery i kept getting constant water infections and a sharp pain under my right hand side ribs... this was dismissed for three months after the surgery by my gp, saying that it was my body recovering from the operation and that things woulod settle down and upon my 3 month checkup with the surgeon he said to me, and i quote, "come to me for appendix problems, and nothing more," didnt check the wound site or examine me in any way and left the room.

i was quite upset at this as you can imagine and a week after this went into complete bladder retention. my bladder has not worked since so i have to self catheterise. i have done numerous tests with the urology dept, which all shows that my bladder has lost its function and is now simply put a sack that will hold the urine in but wont let it out. whilst having these problems, a doctor asked me a simple question which literally stopped me in my tracks and i had to think long and hard about " when was the last time you had a bowel motion" simple question you would think, but i homestly could not answer it. this became a problem over the next 2 years where my bowel stopped working and i was having chronic constipation all the time. being so full at times that i would vomit when i ate because there was simply no room for any more food in my abdomen. laxatives werent helpful, no matter how many i took and enema's didnt work.. much to the frustration of the gastro specialist i was now under. tests showed that the pain that i mentioned earlier under my right had side ribs, was where the problem in my large bowel was and this was dysfunctional. i ended up having most of my large bowel removed and being joined up inside ( a small blessing of not having to have a stoma, however i was told that this would probably only last me 3-5 years before i would have to resort to stoma bags).

after this operation, i still had consitpation but not as bad as i had done and laxitives were more effective. i had a bad case of supra ventricula tachicardia which is where your heart races for no reason, and the hospital had to stop my heart with drugs in order for them to get it into a normal rhythm and put me on cardio drugs and i lived a pretty normal 3 years after that, however, then the constipation started to get bad again, which resulted in me taking copious amounts of laxatives again without results, and i was getting sick when i ate fatty foods, or dairy with sharp pains under my right hand side, which last year i had surgery to remove my gallbladder as it wasnt emptying properly and filling up with fluid. this corrected the problem for a couple of months however last august, i started to feel full all of the time, not wanting to eat, or feeling sick when i did ( i was going through a breakup at the time and put alot of this down to stress and upset) i was managing fluids, so pretty much just stopped eating. i was a big girl at this stage and was around a size 20... however by the time i gave up trying to eat this was November.. and i was living on fatty or sugary drinks to keep me going. my gastro doctor at this point did a gastric emptying test that was abnormal at this point, i however didnt find the results out until January when i was admitted into hospital not being able to keep any food down at all and now anything a drank came straight back up.

when i was admitted i was severely dehydrated and malnutritioned. they put a nasojujedinal tube in to feed me straight to my small bowel and built up my nutrition through that, whilst doing different tests but they couldnt explain why this was happening. the doctors then admitted that they thought i was nuts and that it was a psychological problem. i however had a good surgeon who didnt believe this and had a look into my stomach with camera and noticed that my stomach had a problem opening the polaris muscle (which is the muscle that opens and closes into your bowel). he knew at that point that it was a mechanical problem so they kept digging... but couldnt explain the reasons. then after 6 weeks of the NJ tube being in situ, that came out and they placed a hickman line into my chest to feed me and eventually ( after being in hospital for 5 months) in may sent me to see a specialist in London, St Barts. within 15 minutes of being in the room with this doctor down there, and doing the most random simple tests and answering some very strange questions i was diagnosed. i have Ehlers Danlos Syndrome Type III. or Joint Hypermobility Syndrome as it was previously known.

strangely this is linked with your joints more than anything, and i know i have neveer mentioned any problems with my joints, however i didnt think i really had any problems with them until he pointed them out. my joints click a lot and ache in the winter, and i had always been flexible as a child but isnt everyone?!? the tests i did with him showed that my joints were hypermoble. and Ehlers Danlos was a connective tissue disorder... meaning the connective tissue doesnt hold things how it should. which made my joints more flexible and my organs the same.. all of my symptoms were suddenly explained and made so much sense. in the hour and a half i was in with him, he made my whole life make sense. even down to things that i didnt think was a problem or what i thought was normal for me. down to tiny things, like sedastives not working and local anaesthetics not working, this is all down to connective tissue disorder. it also explained my dizziness as my veins werent clamping when they shoudl so i was getting head rushes as the blood rushed to my brain and made me want to faint. i am now a size 8-10 so you can imagine how much this has had an effect on my body over the last 6 months.

i thought id post this as there is a lot of people with no hope of finding what is wrong, and maybe sumone out there with the same symptoms as me, wondering what the hell is going on. there are differemt types of ehlers danlos syndrome so symptoms may vary slightly but there are some very good website one being which explains quite a lot. my type III is made out to be the least severe however in my case my symptoms are to the extreme, not everyones will be that, and doctors are currently looking into whether i have a brand new subtype or just the most severe of the gastro type. as i write this i am still in hospital hopefully awaiting release soon ( i know, that makes me sound like i am escaping a nut house, believe m e it feels like it after 6 months of being in here, this time but 7 years in total of in and out of hospital) i hope this article may help someone just like me in understanding a little bit about the condition and to all of you others, i wish you all the luck in finding out what is wrong.

:D


***edited by moderator*** web addresses not allowed

Loading...

I get sudden pain and a twisty feeling in the left side of the stomach - I had my large bowel removed 3 years ago and I have a pouch
Reply

Loading...