Need Advice...

[pianogirl]

Is anyone on a Steroid for their Crohn's. I am continuing to feel lousy and my doctor has now upped my Steroid from 2 to 3 a day. (3 MG Capsules).

I am continuing to have severe pain from the Crohn's and Colitis and mine is with Constipation so I am also on a med to move my bowels. My limbs just ache and I can't eat much with all of my food allergies. Just trying to get some direction from someone who really understands what it's like to suffer with Crohn's.

Any advice and or direction would be a huge help.

thanks.

 

[GutlessWonder86]

are you on Entocort by chance?

 

[GutlessWonder86]

I've been on that for a while and it's put my Crohn's in remission. As for the joint pain, I find that mild physical therapy helps...such as stretching, walking, riding a stationary bike slowly, doing stretches for the back.

If you think that would help, you need to see your primary MD and just explain to him that you're joints, back, neck, etc. is bothering you and you'd like to try it. That is what I did with my MD and he was more than willing to let me do it.

As for diet, what I did was made an appointment with a dietician at a hospital that I usually frequent because they have extensive training and experience in dealing with people who have different health issues such as allergies, diabetes, heart disease, IBD, etc. and can advise which foods are better tolerated and which ones should be avoided.

hope this helps. Gutless Wonder Woman (crohn's disease diagnosed at age 12. received ileostomy at age 17 to save my life)

 

[pianogirl]

Yes, I am on Entocort along with a few other things. It has been recommended to see a dietician but I'm at the point where if I eat anything besides rice and chicken broth with a specific type of chip to curb my salt craving, it makes me feel so much worse that I'm concerned, with things so bad right now, to eat anything outside of that. So tired of feeing badly. Thanks for your helpful feedback. I have an elliptical at home so I may try 10 minutes of that to start.

 

[GutlessWonder86]

the registered dietician can give you a meal plan and work with your GI if you are in any amount of discomfort. Also, as a crohn's patient, you have that right to take something for pain and discomfort.

this is a very painful disease and my GI was more than supportive in giving me an Rx so I could get through the days if I had more doctor appointments and tests as well as house hold chores to attend to. Ask your GI for something. Antispasmatics help as well if your gut spasms due to something you ate.

 

[tots]

Entocort didn't work to well for me.

Vit D helped a lot with joint and muscle aches.

Have you had your vit and mineral levels tested?


Lauren

 

[pianogirl]

Hi Tots,
I haven't had my vitamin and minerals tested. I have had allergy tests done and have confirmed which foods to avoid along with having Celiac disease which limits my food intake even more. It's been a tough year and I'm just so hoping for some relief. I spoke with my GI doctor today and he advised to back off my bowel meds and spread my Entocort out throughout the day and not all at once. I'm hoping this will help. He wants to hear from me in two days. I'm on Nexium too but it was because I had Esophagitis as well. My last Endoscopy showed improvement in the Esophagus. What do you take for pain? My doctor told me today that I could take Tylenol every six hours which is new for me. Thanks for the feedback.

 

[tots]

Pianogirl-

Now that I take VitD I can really feel the muscles aches that
much more. My VitD level was 18. So it was pretty low.


I was on prednisone last year for 8 days while I was in the
hospital and as much as I don't like the drug it does provide the
fastest relief. When my Dr discharged me home he started me on
Entocort. I really don't feel it did anything for me. I have since
been back on prednisone and. Entocort again. Failed Remicade
and finally feeling some relief with Humira.

I use Hydrocodone for my pain when it gets really bad. I have more
of the diarrhea than the constipation. I have to be very careful
fiber and spices.


Lauren