• 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.

Our New Life

Hi, my name is Cara and I am new to this whole "disease" thing. My husband was diagnosed with Crohn's in May of this year and our life has been turned upside down. He was a very active person up until a year ago. His health has taken a downward turn since last summer when his first flare up occured. My family has always been very health smart and I assumed his flare up was a parasite or a valve cramping up because of his demanding work schedule. He has had loose stools, fatigue and malaise for a year now. I finally convinced him to see a health care physician in May, after three weeks of abdominal pain. Several CT scans, xrays and a colonoscopy later the GI doctor came back with Crohn's. He was immediately started on flagyl, cipro and entocort. Within two weeks, he was feeling better then he had in months. I hadn't realized how sick my husband had been until I saw how much better he felt. He has probably been feeling sick for years and because being a young man, busy supporting a family he didn't really take time to admit he was sick until it practically brought him to his knees. After the Entocort was finished the GI office put him on Pentasa and we were waiting to hear back from the insurance company about Remicade. Of course, because insurance companies are so delightful, they have denied him the Remicade and we are now looking at having to take 6MP which we are not happy about. My husband is also in the throes of another flare up because the stupid insurance company and GI office drug their feet about formalities and couldn't come to a conclusion. My hubby also has a small bowel perf. which we are waiting to get the results of another CT tomorrow. Hopefully we can can start another round entotcort to get him through the flare up for a few more weeks. I want my husband's life back. He is 28 years old, he is a hard working police officer and father of a wonderful 7 year old boy and is putting me through nursing school. He deserves his life. I want to do everything I can to help him, I hate to see him suffer. I am getting NO help from the doctors office, the internet is leading me in a circle and books are good but there are SO many. I have been told about the makers diet and probiotics, has anyone out there tried these things? I would love to see him medication free but understand that sometimes things have to go hand in hand....his diet must change. He normally eats JUNK, right now it's nothing because he is so nauseated. He lost 15lbs with his last flare up, I hate to see what this one will be like. I refuse to give up hope, if anyone out there has any advice!! I'm happy to have found a group of people out there! :)
 

GoJohnnyGo

One Badass Dude
Hello Cara,

There's quite a number of spouses of Crohn's sufferers who post here. You should feel welcome here.

I've just finished a round of Entrocort and it's managed to kick me into remission.

Diet is huge. Of course, what with Crohn's being what it is, your husband will just have to learn what he can tolerated by trial and error. Everyone seems to be different. I would recommend keeping a daily food diary.

Good luck! And let your husband know that he's welcome to come here and ask questions himself.

Take care and be well,

Johnny
 

My Butt Hurts

Squeals-a-lot!
Hi Cricket-
So glad you're here for your husband. One thing you can do right now is read like crazy here. There is an amazing amount of great advice right here in these threads. As much as you'd like to see him taking no meds, sometimes that is the best thing to keep him healthy. I'd rather take 40 pills a day if it meant that I felt good.
If he is losing his appetite, sometimes people keep up on calories by drinking Boost, Ensure, or even Slim-Fast. (I think the Slim-Fast tastes the best, and I know that sounds strange - but it's not only meant for weight loss and was okay'd by my GI.) Also - as GoJ said, keeping a food diary is a good idea because food can really mess with his belly. A lot of us can't eat onions or garlic without causing pain. I was using the low residue diet for a while, and it seemed to help a bit (Google it).
Good luck - and welcome!
 
thanks guys

Thanks for all your replies. We got the results and the perf has resolved itself and we are now back on entocort and on the road to recovery!! My hubby has been living off of Ensure (the lactose free kind) for a few days now and seems to be turning around. Anything with dairy is crazy to even think about attempting. This whole thing does seem to be trial and error, so I guess outside of staying away from refined sugar and flours and dairy products any other suggestions? Does juice seem to bother anyone? Also, has anyone had luck with goat milk?

Thanks again for the encouraging words, we have had so much support from friends and family but it isn't the same when they don't exactly know what is going on in our home. I wish my husband would get on here and talk this through but he is still going through the whole denial phase. I'll give him some more time to work it through. I'll have to admit, it's overwhelming to process all of this info and pick up all of the slack and do all the things I normally do. I just hope I can keep it all together for his sake and get something nourishing into his system soon.
 
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