I'm really getting scared.

Hi. I'm new here. Found the site when googling for answers.
So where to start. I guess the beginning.
I have had digestive problems since I was 4. The dr told my mom to give me prunes everyday. Did that until I was about 8. Had no issues again until I was 16.
I was constantly hurting. Did not have any problems with going to the bathroom. Just a lot if stomach pain & cramps. After 6 months of testing it just went away.
Again everything was fine. Then when I was 21 I had a lot of problems with my teeth. I was on/off penasilin for almost 1 1/2 years. Then about 6 months later my grandpa passed away. The family gathered at a restaruant. My cousin & I got really sick the next day. Severe D. My cousin was fine a few days later. While I continued to have problems.
Then 1 day at work I dropped to the floor in pain I had never felt before. Went to the emergency room they couldn't find anything. They set up an appointment with a GI a week later I was diagnosed with Crohn's.
I was treated with predisone, immurane, & sulfasulazine.
It helped. I have not had an issue since. I am now 36 so feel I have been very fortunate.
Everything was fine until recently. I had blood in my urine so I went to my dr. Had a bladder infection. They treated it with a antibiotic. That was a mistake. After the first week my stomach swelled up & I was in severe pain.

That was over a month ago. I still have a bladder infection. I keep having these swell ups. Now it's to the point its every day. I am getting really scared. I have lost 12lbs in a month. I am a small person to begin with. I have no energy. My stomach bloats at the thought of eating.

My dr sent me to a GI & I am scheduled for a colonoscopy on the 21st. I'm sure it's not going to be good news.
In the mean time I don't know what to do to keep the pain & bloating down. It's so bad I almost lost my job from missing so much work. I need to do something. I can't even hold my son cause it hurts my stomach to much.

What advice can you give me? I'm getting reallyy scared as each day gets worse. My stomach will swell up & I am C for days. Then D sets in for a couple days. Then the cycle starts over.

Yes the dr did a colonoscopy & a biopsy. The day they did the scope he told me is was Crohn's but couldn't say 100% until the test results came back.

I still have the bladder infection. I'll call my dr first thing tomorrow.

The GI is another story. One thing I don't like is he doesn't see patients in his office. I thought the GI would be the 1 I go to for all things related to Crohn's. Am I wrong?

If I do have to go to the ER what do I tell them I'm having a Crohn's flare up?

Thank you for the help.

Cokeman,
Sounds like you deffintaley are experiencing some flaring. ...from all the bloating. Could be what your eating, could be an infection in your body....could be blockage. One things for sure...If you have blockage you'd be really really sick! Throwing up alot! You wouldn't have to ask yourself if you need to go to ER ...you'd know! If you end up going say you have Crohnes....that pretty much explains everything to them...They'll check for blockage, usually with a CT then sometimes keep you for obersvation. So are you still taking Immuran..and the other meds?

With just being nausious your probably experiencing a flare which would co-inside with your infection your experiencing. The anti-biodicts could have started the bad D and now flare.
Sorry that you have to go through this...it's awful. I know it's more common in men and I always feel so bad for them being the main source of income in a family. Put alot of stress on you!

I used to bloat terrible until I started a Probotic and cut out white wheat! Give it a try!
Good luck

flowery said...
One things for sure...If you have blockage you'd be really really sick! Throwing up alot! You wouldn't have to ask yourself if you need to go to ER ...you'd know!

Not exactly true... Depends on pain tolerance and how stubborn one is (for the first few times anyway) ... Lord knows I sat through a couple blockages with extreme pain and vomiting until they passed. I went to the ER for the last one (I'm dating a girl now who took it upon herself to call the doctor; who in turn called me and told me to get a ride to the ER by someone I knew or the rescue squad) and was glad I did because now I know that the pain isnt a normal side effect of living with crohns and that if it happens again something IS wrong.

I'm still learning about the disease and still know no one but the people on this forum who have it, so everything I expierence I have no idea if its normal, nothing, or something I should be concerned about.

The C for a couple of days followed by D for a few days sounds a lot like a stricture or narrowing leading to partial blockage. If this is due to inflammation, it may be possible to reverse this. If it is due to scarring, it may require surgery. Oddly, one of the treatment options for a stricture is antibiotics, presumably different from the one you got for the bladder infection (maybe you have developed an allergy to that antibiotic?). The other is prednisone - you don't say whether you are currently on it.

In any event, you need to get treatment for your problem. The longer it is left uncontrolled, the more damage is done. Call your GI about this - he may suggest emergency if he can't get you in quickly.

Oh by the way, tell the ER you suspect you have a blockage. Hugs!

First I want to apologize for not getting back to everyone sooner. I took a turn for the worst & was down for 4 days. Second I want to thank each & everyone of you for your advice & helpful information. I'll try to answer everything.

medchrt1 The antibiotic that started all of this (according to my family dr.) was Cipro.

I am waiting for the test results to see if I still have the bladder infection. I also got tired of waiting around so I contacted another GI & have an appointment tomorrow at 10:00. See what he says. I'll then ask him about the questran. I'm sure they will want to schedule a scope. Hopefully they can get me in quickly, I'm loosing energy fast & weight even faster.

flowery said...
Cokeman,
Sounds like you deffintaley are experiencing some flaring. ...from all the bloating. Could be what your eating, could be an infection in your body....could be blockage. One things for sure...If you have blockage you'd be really really sick! Throwing up alot! You wouldn't have to ask yourself if you need to go to ER ...you'd know! If you end up going say you have Crohnes....that pretty much explains everything to them...They'll check for blockage, usually with a CT then sometimes keep you for obersvation. So are you still taking Immuran..and the other meds?

With just being nausious your probably experiencing a flare which would co-inside with your infection your experiencing. The anti-biodicts could have started the bad D and now flare.
Sorry that you have to go through this...it's awful. I know it's more common in men and I always feel so bad for them being the main source of income in a family. Put alot of stress on you!

I used to bloat terrible until I started a Probotic and cut out white wheat! Give it a try!
Good luck

Thanks for the advice. I have cut out white wheat. I was never a big bread eater to begin with. In so much I don't eat the crust when eating a piece of pie. The other thing I cut out completely is coca cola. It was about the only thing I drank (the user name). I did want to say I can't vomit. If I have a blockage I would have to go to the hospital. I am taking acidophilus once a day. It seemed to help the first few weeks, but doesn't feel like it is now. As for the source of income, mine is it. My Wife & I both feel its best for her to stay at home to raise our children. It's just our personal preference.

Aimee =) said...
Regarding the GI - if you don't feel like you're getting the attention and time you need to deal with the issue at hand from yours, don't hesitate to find a new one! With a chronic - embrassing - disease like Crohns, it's imperitive to find a GI you can trust with your health and well being.



I hope answers are found soon *hugs*

I didn't. I want a GI who will see me in his/her office when needed. I called a few friends & asked who they recommended. I have a appointment tomorrow. Lifes to short to waste time on my illness because a dr isn't in any rush to find out what the problem is.

Keeper said...
The C for a couple of days followed by D for a few days sounds a lot like a stricture or narrowing leading to partial blockage. If this is due to inflammation, it may be possible to reverse this. If it is due to scarring, it may require surgery. Oddly, one of the treatment options for a stricture is antibiotics, presumably different from the one you got for the bladder infection (maybe you have developed an allergy to that antibiotic?). The other is prednisone - you don't say whether you are currently on it.

In any event, you need to get treatment for your problem. The longer it is left uncontrolled, the more damage is done. Call your GI about this - he may suggest emergency if he can't get you in quickly.

I am currently not on any meds for Crohn's. I haven't been for about 10 years. Predisone never bothered me except for the occasional mood swings (never violent though).

Hisproudmom said...
Cokeman,


I am a new member myself and am so glad to have found a place where I can chat with people who understand my dilema. I do not have Crohn's, but my 11-year-old son does. I wish I could offer advice for the pain and such, but it sounds like others have given you great advice for that. I wanted to mention something about your comment that you almost lost your job because of this.



I, too, worry about my job. I have to leave work often because of my son getting sick, and then there are the endless doctor's visits and tests that need to be done as well. Someone told me that I should look into Federal Emergency Medical Leave, which would essentially protect your job. It would be illeagal for your boss to fire you for missing work. I have not looked into it yet. The woman who told me about it is going to bring me in some paper work that I would need to fill out and submit, but I know I would feel so much better if I knew my job was protected, no matter how long I had to miss work.



Hope this helps a little.

Yes FMLA is the only thing that saved my job. Sorry to hear about your son. I know I have been very fortunate. My cousin on the other hand has struggled since he was 11-12. It took the dr's 3 years before they found out what was wrong with him. He is now doing very well at 38 years old.

FitzyK23 said...
Just curious, why can't you vomit? Have you had acid reflux surgery?

Nope never had surgery. I don't know why I can't. I wish I could at times. My dad is the same way.