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Wife diagnosed with Crohn's - very bad onset

Hi all. My wife was diagnosed with Crohn's two weeks ago. Her onset/flareup came on suddenly and devastated her system. She was hospitalized for two weeks and we only just brought her home. I'm very grateful to find this forum and I'll have many many questions soon enough but for now I'm curious if anyone has had this severe a flare-up and how long they took them to recover? Is it common for an initial flare-up to be this bad or come on so fast?

My wife has never had digestive problems (aside from traveler's diarrhea; we travel a lot). She complained of gas the week before Christmas. By Christmas Day she had diarrhea but nothing crazy. Two days after Christmas she had a small fever and our GP put her on antibiotics. Next day her fever was gone but she still felt tired and her appetite was steadily disappearing. Come New Year's Eve and she was unable to keep anything down and by evening couldn't even keep down sips of water and her temp spiked to 102. We took her to the emergency room and she was admitted.

They stabilized her and did a colonoscopy later in the week: her entire colon was inflamed, raw, bleeding, etc. I've had a colonoscopy before so I have a good idea what a colon should look like: hers was horrific. GI said he'd never seen a case so bad (and apparently he treats a lot of Crohn's patients). They began treatment (steroids) immediately. A week went by with further complications: nausea & bloating from the meds, swelling in the small intestine, a staff infection, enough blood in each bedpan to give me panic attacks and result in her receiving 2 units of blood to get her count back up. After a week of this she began to recover. No more blood in her stool and she was able to eat solid food in small amounts.

She was discharged and we continued her treatment at home. She lost 10kg since Jan 1 (she was only 60kg to start with - so this is quite a shock to her system) so now our priority is getting her weight up and we haven’t had much time to digest what just happened. She's only able to eat maybe a 1/2 cup of solid food a day and while the hospital's dietician says this is normal, it's maddening to figure if her random bouts of nausea, chills, sweats, etc. are being caused by the drugs, the disease, new complications, malnutrition, or maybe - and, I now know, the most likely reason - because that one peach-slice she ate with her oatmeal was enough to send her blood-sugar level off the charts. It took a few calls to our GI and the dietician for me to believe that although she looks like she's starving, she is getting enough nutrition and eventually the body will allow her to eat more. And unless she has blood in her stool or spikes a fever then we should assume she's recovering.

Ironically, I've been under observation for some kind of colitis for 2 years now (they suspected and ruled out Crohn's early on - I'll post my case elsewhere later) so I'd already read up on Crohn's. But of course reading about the disease and then actually experiencing it are two different things.

So that's about where we're at. This might all be too much detail but again, this has been three weeks straight dealing with this and we're just now coming to terms with it. I didn't advertise to the local boards but we're from the Northwest USA but currently living in South Africa (like I said, we travel a lot). We have 6 months of medications to work through and, on top of it all, I have to learn how to make steamed beets palatable...
 
Wow, it came on fast for her! Mine started very quickly, too. It was like a 24-hour stomach bug that never went away. I've never been hospitalized for Crohn's, but many here have. I'm sure I'll be there soon the way things are going if insurance doesn't get their act together.
 

Jessi

Moderator
Hi xiby and welcome to the forum. :welcome:

I am so sorry that you had to watch your wife go through this. My husband has confessed to me how frightened he was watching me in my onset flare. He thought I was going to die for sure. I'm sure you must've had a similar fear. But thank goodness she's been diagnosed and is getting treatment now. Fingers crossed that she mends quickly.

Mine came on only a tad more slowly than your wife's, but it was still pretty fast. I too, was told that mine was the worst case the GI had ever seen. The good news is that I am in remission now and feeling great, so there is ABSOLUTELY hope for your sweet wife. :hug:

I am so glad that you came here. This place educates you as well as offers a shoulder to cry on. It has changed my attitude about this disease and helps me every day. I know it will do the same for you and your wife. :)

Once again, WELCOME, and I hope to see you around a bit.
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum :hug: That is a very fast and mighty introduction to crohns I must say. With regards to your wife's food intake has the dietician got her on anything like protein milkshakes? Nestle do a range of these and whilst these are a liquid they will have all the nutrients etc that the body needs and people can put weight on with them. It may be worth asking about having some of these in addition to the slow introduction of foods. With regards to the six months of meds is this for the steroids or something else? I do hope things start to improve soon for her and I glad you have now found us, there is always help and support availble here :)
 
Hi and thanks all for the responses - yes, she gets two protein shakes a day, after food - they fill one up apparently. Steroids over an 3 month period - slowly tapering off. The 6 months are Pentasa & a few months of the Immune-Suppressant Azamun (Azathioprine)...

She's still reacting to the malnutrition and drug combinations - but seems better today. Appetite slowly coming up. The worst part now is the insomnia from the steroids - causes anxiety and panic attacks because she doesn't hit REM sleep for very long and wakes up every 2-3 hours which plays havoc on one's psyche.

We know she'll get through this - just seems to get longer every day.

-xi
 

Jessi

Moderator
Yep prednisone is a beast of a tiny pill. We all can concur. Watch her closely. My sister had a serious depression problem a few years ago when she was on it. That depression was filling her with suicidal thoughts and landed her in the hospital. She's okay now. :)

Not everyone gets that way. It effects us each a little differently. Just watch her and love her. :hug: And feel free to do your prednisone venting here.
 

Angrybird

Moderator
Location
Hertfordshire
Pentesa is used for keeping inflammation down so hopefully this will start to kick in soon as well help improve things. I am on Azathioprine myself now but there is no 'end' date on this as such, this is to be used to keep me in remission (once I reach it) and potentially I could be on this for years. Perhaps the doc is hoping they can get things under control for you wife and then have her be med free......
 
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