Need Advice

[MiJo]

Hi, I was diagnosed with crohn's in 2017. I had my first major flare up since being diagnosed in Dec/Jan of this year when my husband and I officially decided on moving out of state and a second flare up that has been ongoing since we settled into our new place this June. I have a new GI and he prescribed me steroids which I took for like two weeks then weaned off and when the symptoms came back (not full force) I was to take one steroid every other day for a month.

Well now its towards the end of this month and for the last few days I have been having extremely loose stools- almost like diarrhea for the past few days along with on and off stomach pain (not too painful though).

I don't know what to do I have been on steroids for too long and don't want to be on them anymore. I'm calling my doctor tomorrow but I'm pretty sure he is just going to prescribe me more steroids.

Also, my crohn's case is unusual as I never had the typical symptoms before I was diagnosed through a colonoscopy. I always had a problem with constipation not diarrhea. I don't know if that information helps but it would be nice to find more people like me if there are any!! No one in my family has Crohn's. Just me

What should I do?

 

[MiJo]

I forgot to add that I think my flare ups might be stress related?? Is this the case for any of y'all too?

 

[my little penguin]

What meds are you on for maintenance?
When was your last blood work ?
Fecal caloprotetin test ?
Scope /imaging ?

The docs needs to know how bad your flare is (what is affected ?)
Then they can decide on new meds /old meds plus additional med
Etc...

Ds has constipation with his crohns as well

 

[MiJo]

I'm taking mesalamine for maintenance. I have been taking prednisone for over a month now for this flare up I'm having. My last bloodwork and stool test, imaging etc was in June. It showed I just had inflammation, high cholesterol and and that my liver was a little enlarged. Nothing else seemed bad. In short, I have a lot of weight I need to lose. I know weight gain and high carb food can cause inflammation. I don't know if this is connected to my flare up though. I don't know if I should be eating special foods? Maybe I will ask my GI tomorrow about a nutritionist?

 

[awoenker12]

I think you need to talk to your doctor about your maintenance medication because it sounds like the mesalamine isn't cutting it. Your next options would be immunomodulators or biologics which are very effective drugs.

 

[Tastemaker]

I'm taking mesalamine for maintenance. I have been taking prednisone for over a month now for this flare up I'm having. My last bloodwork and stool test, imaging etc was in June. It showed I just had inflammation, high cholesterol and and that my liver was a little enlarged. Nothing else seemed bad. In short, I have a lot of weight I need to lose. I know weight gain and high carb food can cause inflammation. I don't know if this is connected to my flare up though. I don't know if I should be eating special foods? Maybe I will ask my GI tomorrow about a nutritionist?

Most doctors will say that diet has nothing to do with it, but I have had excellent results from dietary changes. Since foods can trigger symptoms, it makes sense that if the symptoms were suppressed by meds - and potential triggers were not eliminated from the diet - that the symptoms would return.

I'm not a nutritionist and none of this is dietary advice, but I achieved remission through diet. After suffering from symptoms for years, was finally diagnosed in March, and began a diet in April that led to complete elimination of symptoms (and all inflammatory markers) by July. The key principles I followed were:

1. Find your safe and unsafe foods/eliminate trigger foods
2. Rest the gut to heal the ulcers (intermittent fasting)
3. Soft, safe, predigested (blended) foods when eating
4. Anti-inflammatories (certain spices, teas, etc.)

My diet was quite restrictive, which you can read about in the following thread (as well as my philosophy for why I did what I did), but I'm sure that there a lot of foods out there that will fit the principles above.

https://crohnsforum.com/threads/does-diet-really-help.84934/#post-1023231
(NOTE: In retrospect, I would have added a protein to this diet - I am currently adding a pea protein isolate powder to my smoothies)

(ALSO: Not shown in the post - I also had a calprotectin test done a couple weeks ago with a result of 15, providing further evidence of remission)

Hopefully, some of this is helpful as you plan your diet. Best of luck!

 

[crohnsinct]

The way it was explained to my daughter recently, stress does not cause a flare but if the stressful situation is taxing a body that is already teetering on inflammation the lack of rest will take energy away from the healing process and direct it toward functioning and whammy you are thrown into an all out flare.

Mesalamine is generally not very effective in controlling Crohn's inflammation. It seems to me, just a mom not a doc, that you might need to move up the ladder on maintenance meds.

Prednisone is the drug we all love to hate but it is a necessary evil. Inflammation must be controlled until a maintenance med can take over. For most it takes at least 6 weeks and for some biologics months to work. If you don't control the inflammation with a bridge therapy, you risk worsening inflammation, emergency situation and handing the maintenance med a very difficult situation to get under control.

Believe me I get it. My daughter has been on prednisone for almost 18 months (a month or two here or there off) while we are trying to get her on a maintenance regimen.

If you really don't want to take the prednisone you can try Exclusive Enteral Nutrition. You give up all food and drink except for water and a formula for 6-8 weeks and then slowly reintroduce food. IT is tough but it works better than steroids without the nasty side effects and has the bonus ofelping with mucosal healing.

P.S. one of my daughters gets constipation with her flares...TI disease. The other is all colonic diarrhea and bleeding.

 

[MiJo]

Thanks guys for the advice. I'll take it all into account. I'm calling my doctor today and we'll see what happens. I'll update later.

 

[MiJo]

Well I was told to increase my prednisone to once a day until I see my GI next week. I'm also going to see a nutritionist ASAP. Really hope this clears up soon.