Undiagnosed and super frustrated.

Crohn's Disease Forum

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Jan 15, 2011
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I guess I will start at the beginning....

In early Fall of 2009 I started to have horrible belly pains. I ignored it for a bit cause I figured it was a bug or something....until I started to have rectal bleeding. At first I thought it was a tear but it became clear it wasn't. I went to ER and they told me to call my Family Doctor. My Family Doctor sent me to a Gastro Doc who scheduled a sigmoidoscopy (I think he thought I had colitis). That test didn't really show anything so he scheduled a colonoscopy.

In the mean time I got pregnant. With months to wait for the colonoscopy I hadn't decided if I was going to have it anyway....before I had a chance to decide I lost the baby (and nearly my life) in what would have been the same week as the test. The nurse said I should have it anyway but I told them there was no way I could cause I had endured more then I could handle and I would call back in a few weeks.
Well.....I didn't call back in a few weeks. I had a horrible time recovering (mentally) from what had happened and my stomach had never felt better so I kinda....forgot about it. I assumed it was just a weird thing that had gone away.

Fast forward to the November 2010. I was across the country for work and while in a meeting I started to have unreal pain beside my belly button (left side). It would come and go like contractions and grip so hard I thought I would pass out. Eventually my co-workers took me the ER where they made sure it wasn't a surgical emergency but couldn't tell me what it was. The ER Doc told me I couldn't fly for a few days but to call my Doc when I got home.

Since then I have sat in his office several times trying to figure out what is going on. On Dec 21st he had ruled out everything he could and said it was time for a colonoscopy as he suspects Crohns. Not exactly what I was hoping to hear. I had a trip planned with my 4 year old to Europe and Africa in less then a month.....he said that he couldn't approve me for travel to Africa and he suggests I don't travel to Europe. It was the worst thing he could have ever said me...

Yesterday I was prescribed Naproxen (550mg 2xday) for pain and Domperidone (10mg 4xday) for my stomach. My appiontment with my Gastro Doc isn't until March 29th which means my colonoscopy won't be until May (likely). Which means I will have no idea what is really wrong for 6 months....

In the meantime.... I am going to Europe anyhow (in one week). I nixed Africa cause I know he is right about that but my family lives in Europe so it is much different. Whether I have Crohns or not, I can't stop living right? It would nice to live without pain tho......

Sorry so long!!!
 
Hello Bliss and welcome to the Crohn's Forum.
I am sorry to hear of the loss of your unborn child
and all you have been through...

I would insist on an earlier colonoscopy..

I hope you get help soon.

Once again welcome....
Hugs~Nancy
 
Welcome to the forum, my heart goes out to you.

You may want to discuss the Naproxen with your GI as it is an NSAID which is known to be pretty tough on the gut if you do in fact have IBD.

Best of luck to you and many *hugs*
 
Thanks for the welcome!
Unfortunately there isn't much I can do about my wait time... If they could make it sooner they would. There are only 2 Gastro Doctors in my city and they see patients, do the scopes, do surgery and post ops, have hospital duties etc... They are 2 very busy men.

It will be a little faster cause of everyone else's though. I lost 50% of my blood volume last year when I lost the baby which my body had trouble replenishing and I am losing blood with this so my CBC is not what it should be looking like. I guess it pays to be in slightly worse condition!! lol


David - That is interesting that you said that. I specifically asked "If I do have Crohn's Disease is this the kind of medication I should be taking?" and he said "Yes, it will be fine." but that wasn't my GI, it was my family doctor.
Huh.... I am going to call him when I get back.

Astra - I am going to Luxembourg but I might take you up on that if I'm not getting answers by May!!! haha

I am not liking the domperidone, it makes me feel funny but I suppose it is trading a symptom for a side effect so I gotta figure out which one I don't like more....
 
Why has your doc given you naproxen ( a potent nsaid l..much more likely than ibuprofen to cause a gastric bleed) when he has said he thinks it is crohns? Most gastro problems can be exacerbated by naproxen. It would be worth checking with your doc about this.
 
Why has your doc given you naproxen ( a potent nsaid l..much more likely than ibuprofen to cause a gastric bleed) when he has said he thinks it is crohns? Most gastro problems can be exacerbated by naproxen. It would be worth checking with your doc about this.

Ya, I am going to stop taking it as of today and call him tomorrow. I don't know anything about this so I am glad I posted that so it could be brought to my attention. Too bad cause it really helped with pain....bah.
 
How about asking for a telephone appointment so you can get the GI to order your Colonoscopy NOW, no way should you have to wait until March just to get the ball rolling.

Or can your GP order it now, everyone seems agreed that you need one so it needs to be ordered pretty damn quick!
 
Hey Bliss!

Your story sounds very similar to mine, and our pain sounds exactly the same. I have been in and out of doctors offices because of this for months, so I feel your pain in the wait! I agree with the others, don't just let this go and wait till March! See if you can get it earlier.

Feel free to PM me anytime if you need to vent to someone!
 

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