New Crohn's Diagnosis- feel SO sick!

[jbug86]

Hi there, I'm so glad to find this forum. It's great to be able to learn through the experience of other people.

After about a year of abdominal pains, pain when sitting, and trouble with BMs, Friday I had a colonoscopy and blood work. I found out that I have Crohn's Disease. They found inflammation in the rectum and ileum, along with a rectal ulcer. The doctor started me on 2 antibiotics and Pentasa. First, I had retained gas from the colonoscopy, then yesterday I had a terrible headache (felt like a migraine with light and sound sensitivity) and nausea. Today feels like I have the stomach flu. Diarrhea, nausea, can't even imagine eating.

I have to say, I'm really bummed today! I was hoping this sickness was a passing thing, but if this is from the medicine, will it be around for good? I have a call in to the doctor to see what we can do about dealing with the "side effects." I was really hoping that once we knew for sure what was going on, things would be going uphill. Not sure if this is one of those "gotta get worse before it gets better" things or what. I do know he said it's like finding out you have diabetes, it impacts your whole life and there is no cure, but with treatment should be manageable. I'll be going in to talk about steroids May 22, which is why this bought of sickness is really making me worried.

Should I expect to be sick for a long time?

 

[mccindy]

Make sure you start to monitor your food to determine if that might be increasing your symptoms. Did the doctor discuss diet with you or refer you to a dietician? You should talk to one, or do some research on SCD or the elimination diet. Obviously the meds are probably making you feel nauseous and giving you headaches but changing foods can help. Many of the people on this site are taking meds for Crohn's so I'll leave the details about meds to them, since I've only been on Prednisone myself. But different foods have a huge impact on my gut so I have to be careful what I eat - the effects can last for a full day from one wrong food choice!

 

[alex_chris]

I'd check out the various threads on here about 5-Aza, steroids, immunosuppressives and biologics. 5-Aza only works for few people, steroids should only be taken short term to fight severe inflammation, the other two drug categories are long term treatments.

Crohn's can be managed long term and you can stay in remission for years t a time with basically no symptoms, but that takes the right treatment for you, the right diet, the right way to not get stressed etc. the first step is definitely to get a good overview over everything, for instance by reading a lot of threads on this forum.

 

[Honey]

Hi there,
It takes time to find the right treatment for you. I could not tolerate the usual meds for Crohns one caused me to suffer Pancreatitis. I am best on steroids,Prednisolene, at present. However, this is only temporary as I have been on Infliximab infusions which brought inflammation levels to normal! You can get meds for nausea which should settle that..It is a fickle illnesss and depends on your individual response to treatment!!! Do not worry. You will feel better.Best wishes.

 

[jbug86]

Thanks for the replies! I get a little lost in the threads about medicine. Reminds me of being in science class where the big words made my mind spin... haha But I think I'll get at it with a notebook and try to be as prepared as possible!

 

[Amy2]

Flagyl made my son very nauseated and the doctor simply stopped it. He's doing fine on Pentasa and Previcid alone.

 

[Farmwife]

Hi and welcome,
Some like my daughter had a bad flare up AFTER the scope. I does happen. Have you been able to call the GI nurse and ask about you symptoms? Like Amy2 said, Flagyl can make some very ill.

HUGS

 

[jbug86]

I called the first day I got very sick and she said to stop the Pentasa for a few days. She did say I could try Imodium for the diarrhea, but didn't have any suggestions for the vomiting or nausea. I actually stopped taking everything, just to get through the work week. I've heard that was not a smart move, but I couldn't afford to miss any more work :S I did start the antibiotics again, it seems Flagyl is sitting ok with me- a little stomach distress, but the Cipro makes me incredibly nauseous. I still haven't been able to manage to eat more than two or three bites of anything at a time since the scope, but that's a whole different subject

 

[Farmwife]

I'm so sorry to hear that. Have you thought about Ensure or Boost? At least it would replace the calories. Many people do this during a flare.


I hope it gets better soon.

 

[jbug86]

I hadn't thought about that at all! It's a great idea! I've actually always struggled with being overweight, so I'm not concerned about losing weight now like I've read so many people do... just don't want to miss out on those essentials! Thanks for the suggestion!

 

[soccermom081105]

Hi and I am sorry you are having such a hard time.. I know it is hard to get through and digest the news but I find most foods on a low residue diet is something I can handle. It gets old eating pretty much the same thing every day but some days it beats the alternative

hang in there