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Newly diagnosed- Need ANY advice

Location
Michigan
I was diagnosed with crohn’s disease last month. It took doctors a year to decide to do a colonoscopy on me, which did not go well. The procedure had to be aborted due to severe inflammation.. and she didn’t even make it a third of the way through. Biopsies were taken which confirmed crohn’s, and i’ve since had a ct scan and abdominal radiographs. The ct scan showed that the entire length of my large intestine are affected as well as a portion of the small intestine. I was on Prednisone for almost and entire month along with Mesalamine, and was weaned off a week ago Thursday. This past week, Tuesday, I started with a fever, and the urgency, and frequency of my BM’s is much worse and there is blood present in almost every one. I got in to see my GI on Thursday, she restarted me on a lower dose of Pred and ran some tests to rule out infection. Today is Monday. Saturday my fever came back, and although it’s much lower, it is still present. Last night before bed I took a whole imodium tablet and i still had to rush to the bathroom multiple times throughout the night. I’m at a loss. My husband tells me I just have to wait it out. But I’m miserable, confused, scared and I don’t know what to do. My doctor says so casually that it’s just a flare up but I’m so new to this, i have no idea what to expect or how to cope either. Please, any advice or helpful tips would be GREATLY appreciated.
 
I'm sorry to hear your diagnosis. Crohns can be pretty miserable. It sounds like you need a medication review to get the inflammation under control (steroids are a short term measure, they can induce remission but doesn't work for everyone. You can't stay on them long term because it affects your bones. Budenoside has less side effect than prednisolone as gut specific). The longer term options are drugs that calm down the immune system and come in pill, injection or infusion form. Your GI would need to advise you which one. In the interim, you can try and soothe your poor intestines by avoiding eating stuff that might irritate them (nuts, seeds, high fibre, gluten, high sugar, for some people milk, fatty and spicy foods) and switch to stuff that might calm them (bone broth, soft foods like scrambled egg, soup, white rice, bananas, mashed veg, turmeric tea, avocado, coconut oil). Google lofflex diet for more info. I find a probiotic powder called vsl3 helps symptoms but doesn't stop inflammation (and its not cheap). Supplementing with vitamin d3 always wise in crohns unless you live somewhere hot and spend time outdoors regularly. Best wishes and hope you are better soon
 
Location
Michigan
Thank you so much. I’ve been taking the probiotic Fortify since first being diagnosed, but i will look into the one you suggested. My doctor suggested i start Humira. but she needed to rule out any infection first.
 
Location
San Diego
My doctor says so casually that it’s just a flare up but I’m so new to this, i have no idea what to expect or how to cope either.
There is no such thing a "just" a flare up. A flare is an attack of active disease. It's doing damage to your gut and needs to be brought under control as soon as reasonably possible.

While it's good that you have been weaned off the prednisone, since it's not a long term solution, it looks to me like your doc may have done it too soon - before transitioning you to a solid longer-term drug to control the Crohn's. Given the severity of your disease you should ask your doc about getting going on one of the biologics such as Remicade or Humira. Or at least something as strong a azathioprine. Mesalamine is not going to help much for Crohn's. You need something more.
 
Hi welcome on the forum,

unfortunately the first flare or onset of Crohn's disease is usually the worst moment, so I understand your worries. The worst symptoms, and fever will disappear once you get the right treatment, so hang on there! You'll feel better soon.
The advices I'd give you to address it are:
-try to find a good IBD team. It's important to be followed by specialistst of this kind of disease, and not by the first gastro you find.
-take the medications they give you, and avoid self medication now. could either be prednisone for the short term, or biologics or immunosupressants for the longer term. Immodium will not help much in that situation.
-adapt your diet, eating foods that will be more gentle for your stomach/colon till you feel better. The best think would be a liquid diet like an ENTERAL NUTRITION (Modulen, Ensure), for some weeks, it usually increase your chance of inducing remission in few weeks. Meal replacement with thos formula could be a nice idea too. Try discuss it with your ibd team, if they think that could makes sense in your case.

let us know how it evolves, hope you'll feel better quickly.
 

my little penguin

Moderator
Staff member
Yikes
5-asa (mesamilamine) is not recommended as monotherapy by the Cochran report for crohns
Some Gi try to use it for very mild crohns but not moderate to severe crohns
It only treats the top layer of the intestine similar to a cream but crohns affects the entire thickness of the intestine

Pred is a good drug to love to hate
It’s does magical things for inflammation hence the love but long term has consequences

Humira takes 3-5 months to start working which means until then you will need a bridge therapy
To keep inflammation down until the meds kick in
There are basically two options
Steroids or exclusive enteral nutrition (een)
Some use both
The use een (formula only no solid food in kids )
This can work for most kids (adults it’s about will power )
They drink ensure or boost for 6-9 weeks no food
Or semi elemental (peptamen ) or elemental (vionex , Neocate jr etc..)
Depends on how badly the small intestine is affected

Ds was dx at 7 and did een multiple times as bridge therapy (sometimes steriods sometimes a little if both) he is 15 now .
Humira worked very well for him for over 5 years

Good luck
 
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