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A case of mild Crohn's but nothing seems to help

Hi, I just found this forum and will be interested to read some of the posts to see what new things I can learn. After quite a few years of drs. not being able to determine for sure what was going on with me and after test after test after test...I have been told that they are pretty sure I have Crohns. This was decided after the last test which was the pill cam that detected a number of small ulcers throughout my small intestines. The one main symptom I have is chronic diarrhea and it is more of an annoyance than a life-limiting thing. I do not lose weight, no pain (some discomfort), no blood, no fevers. I have never been hospitalized. I have been to several drs as I feel some have just written me off when no medications really had any major effect. I have tried removing food items from my diet (ie dairy) with no real effect either. I am scheduled for a colonoscopy in about a week and the dr wants to put me back on predinsone again after depending on what he finds. That is the one drug that got rid of the diarrhea completely years ago when I took it for a short period of time. I hated being on it BTW. It is very frustrating and I am tired of dealing with chronic diarrhea. My question is: Is there anybody who has a very mild version of Crohns and if so how is it treated? Does anybody have a recommendation of gi dr in the Kansas City area?
 
My disease seems to be very mild compared to a lot of people here.

What problems did you have with prednisone? You might find there are ways of managing some of the side effects.

Have you tried anti-diarrhoea meds like Lomotil and Loperamide? They won't help the inflammation or get you out of a flare, but they do help with diarrhoea symptoms.
 

SarahBear

Moderator
Location
Charleston,
Welcome to the forum, KayG!

Like UnXmas, I'm wondering what problems you had with Prednisone. We might be able to give you advice on dealing with the side effects. :)

Has your doctor mentioned Entocort as a possibility? It's another steroid but milder and with less side effects. Depending on the severity of the inflammation, it might work just as well.
 
Thanks for replying. With the prednisone, I guess because of the swelling that can sometimes occur in your face and neck, I had this pressure that I could feel through my neck and it was very uncomfortable. It almost made me feel a little queasy. I have been on entocort and it really didn't have much effect. I have tried loperamide and that seems to help as far as slowing the diarrhea but then I get this uncomfortable feeling of fullness/heaviness in my abdomen.
 

Astra

Moderator
Hiya KayG
and welcome

Hope you get your diarrhea under control, a low residue diet helps me with this.
I have to say, IMO, there is no such thing as 'mild Crohn's', I was told this too, I was only on Pentasa, now I'm stricturing with a possible fistula, already had one obstruction and hospital for a week, a year on Pred and Flagyl, don't leave this unpredictable bitch to it's own devices!
Stay away from salt and sodium on Pred, this helps with swelling.
Have a mooch around our treatment sections, there are lots of other meds out there other than steroids, I myself started Humira today!
Good luck xxx
 

CrohnsChicago

Super Moderator
Hi there!

I have tried and felt everything you have mentioned in this particular post. I just tried Entocort for the first time a few weeks ago. It didn't work fast enough for me so I'm currently back on the prednisone 40mg to treat my new flare. So you are definitely not alone. I was categorized as moderate to severe crohn's-colitis, and in the past year have had 3 flares which all required me to be put on prednisone temporariliy.

With regards to prednisone, the first time I was on it I actually managed to LOSE weight and gain muscle. It made me really restless and I was physically in a position to work out and stretch daily which not only tired me out but kept me away from the fridge and poor food choices. Not saying this will work for everyone, but it was my experience my first time on pred.

All three times I manage to maintain my weight and avoid major bloating issues (moon-face) by reducing my salt intake while on prednisone and significantly increasing my water intake to help reduce water retention effect. I juice periodically to along with the water to help flush out my body and make sure I am getting proper nutrients and practice clean eating (predominately non-processed, home made meals) to help ensure I am limiting my salt intake. Also make sure you are increasing your potassium and calcium intake while on prednisone to help reduce the effects of bone damage and risk of hypokalemia from long term use of the medication.

Loperamide (Immodium) worked for me as well, but I experience the same symptoms of fullness/heaviness and the next time I go to the bathroom would be a pain/strain/constipation-like issue. I learned that I can only take half of a regular dosage of Immodium and it works just as well for me and doesn't cause those problems. In fact, now I only use the Immodium Multi-Symptom which is supposed to help combat the cramping/bloating/gas situation as well as diarrhea and it has for me each time I've used it thus far. However, I would consult your GI before playing around with these sorts of anti-diarrheal medications as long term use increases the risk of altering your digestive habits and discomforts.

I personally only use the half-dose of loperamide in worst case scenarios where I have frequent diarrhea issues, need to be out for a long period of time and have no guarantee of gaining easy/quick access to a bathroom or if I am in a situation where choosing my food in public is not an option.

Wishing you the best! Let us know if you have any other questions.

Thanks for replying. With the prednisone, I guess because of the swelling that can sometimes occur in your face and neck, I had this pressure that I could feel through my neck and it was very uncomfortable. It almost made me feel a little queasy. I have been on entocort and it really didn't have much effect. I have tried loperamide and that seems to help as far as slowing the diarrhea but then I get this uncomfortable feeling of fullness/heaviness in my abdomen.
 
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