• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

New here..

hello! i have frequently been checking out this site for the past few weeks and finally decided to join. i am getting very frustrated with this sickness, doctors, and my insurance hoping someone can give me some insight. this may end up being long, sorry, but this is my story..

i am 31yr old female. in early july i woke up with horrible cramps and diahrea. i figured i had a stomach bug. i just so happened to have a doctors appointment five days later, for a different matter, and mentioned the stomach issue with my dr. he thought the same as i, and said it would run its course in a few days. it didn't, it got worse. the following week i went back to the drs. this time he decided to treat me for c-diff, and sent out stool samples. i had a fever, horrible cramps, and going to the bathroom at least 15x a day.

two days after that visit, i felt worse than ever and decided it was time to go to the er. it was a good thing i did because i was severly dehydrated. they admitted me because my potassium level was dangerously low. c-dif came back negative.but they were testing me for every possible bug and parasite. they performed a sigmoidoscopy that day, and after the procedure i was surprised to see the gi on google images. he said my colon looked like it had third degree burns, had never seen anything like it, and was trying to find a similar image. the gi thought it may be an ibd but was waiting for the other labs to come back because he also thought it could be an infection.
five days later all the labs came back negative, he said i had ulcerative colitis (he said he wouldn''t know for sure until i had a colonoscopy but wanted to wait until the flare calmed down) and finally started treating me with prednisone. After nine days of being in the hospital, my potassium was still low but stable, they finally discharged me (medicine regiment of 40mg prednisone, potassium, calcium, and a multi).

the next few days i felt ok, the cramps weren't as bad and my trips to the bathroom had halved. unfortunatly i wasnt on the mend, a few days after when i went to the bathroom only blood was coming out(or at least it seemed). and after i would get so dizzy i was practically blacking out. the second day of that i went back to the er. my heart rate was 155 and bp 90/60. the loss of blood had made me very anemic. they performed nasogastric intubation to check if the blood was coming from my stomach, it wasnt. i was admitted again because of anemia. they uped the prednisone to 120mg (iv) for two days to try to get the inflamation under control. after five days of iron, blood transfusion, and high doses of pred the bleeding had stopped, my red blood count was low but stable they discharged me.
i saw my gi for the first time since the hospital, i had hoped that he would tell me everything i wanted to know, and i would be on my way. however, he really didn't tell me anything other than he was leaning towards crohns disease from the biopsies, but again, wouldn't know until colonoscopy (scheduled for 9/14). and that i would have to stay on pred (30mg, pcp lowered in 10mg saying it would let me sleep better)for at least three more months.

after that last hospital stay, i have hardly been crampy and my bm have slowed to about 3x a day and are practically solid!! however, i am exhausted and i have been running a low grade fever for the past week. i am really frustrated that gi couldn't tell me what was going on with me, and my pcp is just a joke.

i appologize for the lengthy message, i just feel that no one will tell me what is going on and no one understands how crappy i feel. i'm in limbo. any advice would be greatly appreciated!

thank you, i hope everyone is feeling well!
 
Hi
Welcome to the forum. I'm also quite new to this forum too. Like you I have been having problems with diarhroea and sickness. I hope your insurance company can pay for all the tests you need so that you know what is wrong with you.
Dee
 
HI Jade,
Im julie and i have uc. i guess you've done plenty of googling by now and are a bit lost.
You are in a flare, its not a typical flare, its quiet severe but you seem to be getting it under control with the pred all the same.
Blood loss cramping and diarrhea are all markers for uc. sometimes GI cant differentiate between the UC and crohn's but the treatments are very similar.
Have a look at the treatment section in this forum and familiarize yourself with the drugs. You are on the 2nd level at the momen- steroids. once you get it under control you'll be put on maintenance drugs-5asa's, like pentasa or salofalk or asacol. you can get these in oral and rectal form. im sorry but it takes a while to get it right and i personally have tried them all. you would normally use steroids to treat a flare or up your maintenance meds and add rectal meds.
look up also the side effects of pred as you are on such a high dose some of what your feeling could be down to that.
It will take a while for your body to recover so rest easy.
Any questions you may have dont be afraid to ask.
if i cant answer it someone will.
JU
 
Hi,
I am sorry to hear that you feel so bad but you are in the right place to find some information and support! I really hope that your doctor can help you figure out what is wrong and start you on the medications you need. Your experience sounds similar to mine in that I am 32 and I got really sick at the end of June/July. Prednisone helped me stop the diarrhea but as my doctor said, and probably yours too, it is not a long term solution. Here's hoping for the best and keep your spirits up!! :)
 

David

Co-Founder
Location
Naples, Florida
Hi there Jade and welcome to the community!

I hope you're feeling a little better since you last posted.

While a low grade fever can always accompany IBD, it always concerns me a little bit. During all of this, have they done a CT scan?

Your fatigue could be due to a variety of reasons. If you have Crohn's, vitamin B12 deficiency is a common cause. Dehydration as well as anemia are also common causes. And of course the overall stress of what you're going through.

I'm so sorry you're having so much trouble. We're here for you though!
 
hello, thank you for the warm welcome! i am feeling better since i first posted! finally on the mend after six weeks (i hope). i am feeling ok about a crohns diagnosis, i go for colonoscopy week from friday (hopefully gi will give me a sure diagnosis then). my concern now is what if its not. it seems that so many uncertainties have happened since all this started with me. and i have so many questions but at the same time i have no idea what my questions are. this site iss great! i feel so much comfort in knowing i can have a question and either post it, or find a post similar and someone will understand!
thank you again. hope all is well
jade
 
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