I Give Up...

[Razzyirt]

Well....I went and saw the GI doctor today. After waiting over a month to get in to see him...

I asked him about the bouts of diarrhea and stomach pain/cramping and his words were "I could scope up your back end but I don't see the point, as it's not like I'm going to find anything. If it was IBD then you would have had diarrhea that kept getting worse. The fact that you have bouts of constipation means you have IBS. Take fiber supplements and drink more water."

That was basically all he would say. He just wanted to concentrate on the reflux that I have (which is all fine and good...as that is a problem). So, he basically said that I should wait to see the surgeon that is assessing me for a fundoplication to try to help with the GERD, and if I really want one, I can ask him about doing a colonoscopy. Really want one eh...:ybatty:

So, I've decided to just give up. I feel like I just have to accept the fact that there is something going on, I just have no idea what. I'm tired of the strain of trying to find out what it is, and constantly being told that everyone has come back normal. Today I have eaten 4 pieces of pasta and a pear....and have had stomach pain so bad that I couldn't walk. The doctor told me that it's the reflux....

*sigh* I just want to give up....

 

[Susan2]

Have you tried going wheat free? A lot of people find that, if they cut out all wheat, their gastric reflux goes away. It's a bit of a nuisance because you have to read labels - wheat hides in many places where you wouldn't expect it. Rye bread, for example, often contains wheat, but you can get wheat free bread and pasta. Even soy sauce usually has wheat in it, so you have to look for "wheat free" products.

 

[StarGirrrrl]

It may be just me but pears absolutely kill me and leave me in agony!

 

[Cat-a-Tonic]

Oh Raz, please don't give up. We've all felt that way from time to time, but if you're in that much pain from eating a small amount, you know you can't just give up on finding out why. Take a few days to rest and recover from the frustration and exhaustion of this fight, but don't give up entirely. You *know* it's more than "just IBS" and GERD. Keep fighting for answers. I've been there and I know how tremendously exhausting and frustrating it is, but you can't give up.

It sure sounds to me like it might be time for a new doctor. Constipation can certainly be a symptom of IBD. Please do try to get that colonoscopy. And whatever other tests too - if you haven't yet had a c-scope then I'm assuming you haven't had much in the way of testing? Make those doctors at least look at your colon and terminal ileum before they proclaim it's "just IBS." Good luck, hang in there, and know that you are not alone in this fight.

 

[kathyrussell]

yes I have been told to take lots of fibre benifibre Medimucial etc But i have found that that made me Alot..!!! worse but I have the constipated version of crohns..

 

[Razzyirt]

I'm just getting to the point where I don't know what to do anymore. It's been a very long last few years...

To quickly summarize, medical issues aren't new to me. When other people were going to University and out partying with friends, I was fighting a hospital acquired super infection. A routine surgery (where they promised I would be back to snuff in a week, tops) left me incapacitated and led to over 15 surgeries, living at home with an IV pump getting 24 hour antibiotics...and mega doses of painkillers and other pills.

It was after this that all my other problems started. This was 6 years ago. I was unable to eat solid food for about 9 months (the infection was in my face and skull). I never received any sort of nutrition support or saw a dietitian. I spent a year and a half sitting in a recliner, unable to move...never saw a physical therapist. When I took the last pill, the doctors washed their hands of me, said I was 100% normal, and said, go, be free.

Of course...being young and naive...I believed them. Little did I know what was in store! A few months after "recovering" I tore all the muscles off my rib cage, when I was walking the dog (this is when I found out my muscles had all turned to mush). I started refluxing up everything that I ate, I became debilitated by fatigue. And my digestive system went entirely to hell.

Years later...here is where I am. I am unable to attend school full time, or do my internship full time because I can't handle a full load. I just get too tired and worn out. I suffer from recurrent headaches, sore throats, aches and pains. I am plagued by digestive problems (one day I have to run to the bathroom, barely make it, and it's close to water....the next day, it's like going glass and they're rock hard and you're pushing like crazy). I have had an anal fissure for the last 6 years and I have tried everything to get it to heal....it hurts to the point where I can't sit, walk, stand...and I just lie face down with a heating pad.

I am now at the point where I can reflux water. The reflux has become so bad that I've damaged my vocal chords, and my voice has changed and I lose it often. I reflux into my lungs and have problems breathing. I can't exercise because of the pain. I can't sleep because of the pain. I'm taking fistfuls of medications...and they do nothing.

I have intense stomach pain and cramping. Lately, it has been so bad that I have debated about going to the ER...I am getting to the point where I can hardly stand it. One minute I can't even smell or look at food, it makes me wretch. The next day, I'm starving and stuffing my face (not that it makes me feel good). I don't ever throw up...fully...I just regurgitate into my mouth, but refuse to throw up (I don't know why...) so the docs won't count it as vomiting.

I went from being a full time student, taking 6 courses a term (in engineering) and doing competitive trail running (a race at least every second weekend)....to this. This pathetic blob that doesn't have the energy to shower some days. I spend most of my time in the bathroom...or getting sick over food.

To be honest, I don't even know what to think anymore. The doctors tell me I have chronic fatigue syndrome and chronic pain syndrome. That that is the cause of all my problems. Oh, and IBS. And no, I have never had any testing for IBS (only a gastroscopy for the GERD).

So...basically, they tell me that I have a bunch of syndromes, because they can't find anything. And I'm getting to the point where I feel like it must all be in my head...that I must be somehow making it all up. That, if only I believed I was better, or just accepted the IBS, CFS stuff that it would all be better....

And I just don't know if I have the energy to fight anymore...because all the tests keep coming back negative....and they tell me there's nothing wrong with me. A 25 year old woman, goes from being a competitive athlete and student to barely being able to function....and there's not a damn thing they can do about it...


So...sorry, that was a long rant....just felt like getting all of that out *sigh* I don't know if it could be IBD anymore. I definitely don't fit the mold of anything it seems. So, I don't know if I should pursue the IBD thing, give up, or look in a whole other direction....

 

[dannysmom]

Hi. I agree with Cat. "Take a few days to rest and recover from the frustration and exhaustion of this fight, but don't give up entirely. "

You have been through so much ... how frustrating you are not taken more seriously by doctors. I am not sure where you live and how easy it is to see another GI. I do think it is worth having a colonoscopy so keep pushing. Have you been tested for autonomic dysfunction? (I am not sure exactly how that is done) I think you need a really excellent hospital to help get you feeling better given all you have been through already.

My son has been sick for over 3 years now and we have no clue what it is. It is frustrating and depressing ... but we have full support of a GI that humbly admits he thinks Danny's illness is a mystery.

Good luck!

 

[Tesscorm]

I can't begin to imagine how frustrated and hurt you must feel! As hard as it is hearing a diagnosis, to not even know what you're fighting must be so much more difficult! When I was young (5 years old), I was diagnosed with juvenile osteoporosis. But, to get to that diagnosis...OMG!! It's rare and certainly the LAST thing the specialists looked for - and I think I had specialists from every department perform every possible test! Including a psychiatrist because, if they can't find it, it must be in your head! It was actually a young doctor on an exchange program from Europe who diagnosed me (or, at least, started in the correct direction). So, don't give up... Just before diagnosis, my parents were on the verge of making the decision to have me, somehow, transferred to Boston (I think) because of the reputation of their children's hospital.

When you see the surgeon, tell him your concerns and do the colonoscopy. It may give some clues as to where to go from here!

I found this link when reading an article a while back... you may find it interesting, it took this family 3 years to get a diagnosis for their daughter. Their site lists organizations that deal with rare diseases - maybe they can give you some guidance.

Good luck!

http://www.mysterydiagnosiskids.org/Links_for_Research.html

 

[natatak227]

Don't give up!!!