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Posted By : Ritz - 10/2/2017 4:19 PM
HI

I was dx with Crohns last week after colonoscopy. I had severe diarrhea and cramping for two months. I will be starting Humira as soon as its approved by my insurance. I was on prednisone for 2 months. I will be going for capsule endoscopy.

I wanted to know how long one has to be on humira and about food..Can you eat everything. As per my GI , I can eat everything as I was eating before. I was also told by someone that with CD you suffer all your life?

I would be interested in knowing how other's are coping with CD.

Thanks

Posted By : 73monte - 10/2/2017 5:25 PM
It sounds like you're getting good medical care. You seem to be on a good treatment plan, with follow up diagnostics.

You have to understand that Crohn's is a life long condition with no cure. Don't confuse that with suffering for the rest of your life. With the proper meds, you can hopefully control your symtoms, and go on with a very normal life.

2 months of Prednisone should have you feeling a lot better. Once you transition onto Humira, you should notice more improvement fairly quickly.

As far as foods go, if you aren't flaring, and are feeling well, you can pretty much eat what you like. The exception would be the typical avoidance foods. Nuts and seeds, popcorn, hard skinned fruits or veggies for example. For many, this can take some trial and error. Some keep a food journal, and track how certain foods affect them.

Hope you keep things under control. Keep updating your progress. You'll get some very good insight from this forum.

Posted By : NiceCupOfTea - 10/2/2017 5:55 PM
Sorry about the diagnosis. On the bright side, at least your GI is putting you on decent meds straight away, instead of faffing around with near useless mesalazine.

Once you're in remission, you should be able to eat a normal diet. Everyone is different, so I can't give you any hard and fast rules. But if there are any foods which seem to consistently bother you, it's probably wise to cut them out. Probably better as well to keep sugary and fatty foods as rare treats rather than eat them every day, but eh, I don't myself :-/

You'll be on Humira for a few years most likely. As long as it is working and you are in remission, you shouldn't stop it. It's kind of scary to think about always being on medication, I know. Try not to think about the lifelong aspect of it, particularly as we don't know what treatments will come along in the future. I don't see a cure on the horizon any time soon in all honesty, but better treatments are far more likely.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

Posted By : Ritz - 10/2/2017 7:44 PM
Thanks 73Monte!

Sure I will update you my progress. It took two months to diagnosed. I was hospitalized for two weeks for food poisoning that's how all started.

I didn't know that with no flaring you still cannot eat certain food like nuts and etc. How about cooked vegetables?

Humira, do i have to be on it life long or is likely to get relief.

Thanks once again for quick response.

Posted By : Ritz - 10/2/2017 8:10 PM
Thanks NiceCupofTea!

I hope Humira works for me. I spoke to my internist , she said if its in remission , usually humira can be stopped. I'm concerned about side effects of humira such weight gain or weight loss or etc. I read about horror stories such some gaining like 90Ib . Is it true?

Thanks once again for quick response.

Posted By : 73monte - 10/3/2017 3:24 AM
As far as the avoidance foods. Once in remission, you can theoretically eat anything. As a precaution, most still have avoidance foods that can get caught during digestion. Popcorn, corn, nuts and seeds are the most common.

You shouldn't have any problem with most cooked or raw vegetables. For many it's an individual thing. Even without IBD, we all have foods that don't agree with us.

Humira isn't the type of medication that you can just start and stop at will. When you discontinue any anti-TNF drug, you'll likely produce antibodies to that drug which would prevent you from going back onto it. If Humira works for you, you will likely be looking at staying the course for a long term. Not sure where you got the idea that you could gain extreme weight. That's certainly not a worry for most IBD patients.

Posted By : NiceCupOfTea - 10/3/2017 6:32 AM
I've heard stories of weight gain on biologics, but there's no physiological reason why you should gain weight - they don't mess with your metabolism or blood sugar levels, like some meds do. I suspect people just eat more when they stop flaring and get into remission, and possibly absorbing more of the calories from their food as well. Prednisone is the only Crohn's med which causes weight gain - usually just water weight at first (i.e. moon face), but in the longer term it can lead to increased weight gain in the stomach and back ('buffalo hump'). On top of screwing with your metabolism, it also can make you ravenously hungry. The water weight will disappear quickly after stopping pred, but not any extra fat that was accumulated.

That said, a 2-month tapering course of pred is not likely to do any lasting harm. It's a dangerous drug, but the worst effects usually occur from being on high doses and/or being on it for several months or years.

I agree with 73monte about not stopping Humira even in remission. It's for two reasons really: 1. the possibility of producing antibodies which will prevent you from going back on the same med in the future and 2. reducing the likelihood of flaring again. It's possible you could stop Humira and stay in remission for years. On the other hand you could stop it and start flaring a week later. There's currently no way of predicting these things, but if Humira is the main thing which is keeping you in remission, then it would be foolish to stop it. There are no meds which are perfect or work forever, but ideally you want to keep the damaging inflammation at bay for as long as possible.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

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