remission didn't last long

[Shirl]

Last June I was told that my disease was inactive, and as you can imagine I was extremely happy. But unfortunately that happiness didn't last long
The pain never totally subsided, and I was told that was because I was constipated a lot. So I try to eat lots of fresh fruit and veg to keep things moving.
However the pain has gradually got worse and worse and I now think the remission is over, it hurts every time I eat and the pain is really bad again
This now puts me in a dilemma. My appointment for the hospital isn't until 6th March. Do I wait or phone my IBD nurse? What puts me off phoning the nurse is I know she will advise me to get a prescription for Entocort. This just makes me balloon and I'm still trying to shift the weight from the last lot I was on.
I know that makes me sound vain and I should be just thinking of trying to sort the pain out instead of my weight

 

[Hope345]

Shirl,
sorry to hear you are having problems again.
Well maybe Entocort is not the one for you.
If you are constipated, Our GI recommended a daily mild laxative like Miralax.

Believe it or not, some say too much fruit and veggies can be hard on the system, especially during a flare up. It can be a bit confusing. They put our daughter who also gets constipated, on a low fiber, low residue diet. If you juice and remove the pulp of the veggies and fruits that could help too.

It is okay to be a little vain, especially if you might have other options. Sometimes we dont.

If changing your diet doesnt help and the pain increases, I would not wait to see the doctor or call for advice. You could also ask her if there is another nutritional fluid to take besides Entocort.

sending you the best. also do some research on this site with others who have used Entocort.

 

[Shirl]

Hi Julie, I was prescribed lactulose and fibogel to keep me regular but the fibogel bloated me. I'm not constipated anymore and hopefully it stays that way. I'm trying to eat healthily at the moment, and seem better with homemade soups for now because "normal" meals cause more pain.

 

[Hope345]

If the pain persists, be sure to call your doctors office. That is what they are there for.
If the pain is caused from a flare, you dont want the Crohns to get into a full flare. Did you ever have to take Prednisone? Where is your Crohns located?

If you think about how important it is to keep the Crohns from doing any damage to your digestive system, then you wont have any problems calling your doctors office.

Have you noticed any weight loss, or other symptoms?

 

[rollinstone]

I agree w Julie id call your nurse, I waited like 2 months after my diagnosis to try get in earlier and I wish had of

 

[Shirl]

I haven't tried pred yet, my crohns is in the terminal ilieum and the large bowel. But when I had colonoscopy and MRI last May they said it was inactive. But the pain has been getting steadily worse.
I will phone the hospital today and see if there is anything else I can try instead of Entocort.
No weight loss as yet, but my appetite is waning. I rarely get the big D, I usually get constipated. But I think I'm managing to avoid that with my diet xx

 

[crushingcrohns]

Awww... I'm sorry you aren't feeling well again. That sucks. Crohn's is one of those diseases that you need to keep doing whatever it was you were doing that got you to remission. If it was a certain diet, stick with it, if you were taking a certain probiotic but stopped or switched, go back to the one that you used that made contributed to you getting better. Trust me, I know it's frustrating and hard to figure out what your body will tolerate and what it wont but whatever it is that ends up working for you, KEEP ON DOING IT. It has taken me years to figure things out with trial and error and I still am learning things.
A lot of stuff can happen if the last time you were checked out was last May. With Crohn's, depending on the way you take care of yourself, thing can change real quickly. If you cheat a little and eat stuff that you know makes you ill, that right there can send you back 10 steps. That was what happened to me. I hit remission and was there for maybe 2 weeks tops. Someone who lives with me, knows my diet restrictions and knows that my goal for years now has been to get into remission (in a safe way) offered me a bowl of soup that I trusted didn't have anything in it that would make me ill, to find out that the egg had cheese in it. That was all that it took for me to get kicked back into sickness. The taste was real nice... I'm not talking about the soup either. So anyway, my point is to stick with the things that don't make you sick, dont eat foods you shouldn't, take your meds as you should and you'll get back there again. BTW, prednisone is worse for making you bloat. Entorcort (sp?) is a better choice if that is an issue. I actually just posted a blog post yesterday. There is a new drug that sounds very similar to Entorcort thatw as just approved by the FDA for UC. it's a form of a steroid and called Ucelis I think. Click on my blog and it's the most current posting and it has some info about it. The drug may work for you so you may want to mention it to Dr GI. :hang: and i hope you start to feel better soon.

Last June I was told that my disease was inactive, and as you can imagine I was extremely happy. But unfortunately that happiness didn't last long
The pain never totally subsided, and I was told that was because I was constipated a lot. So I try to eat lots of fresh fruit and veg to keep things moving.
However the pain has gradually got worse and worse and I now think the remission is over, it hurts every time I eat and the pain is really bad again
This now puts me in a dilemma. My appointment for the hospital isn't until 6th March. Do I wait or phone my IBD nurse? What puts me off phoning the nurse is I know she will advise me to get a prescription for Entocort. This just makes me balloon and I'm still trying to shift the weight from the last lot I was on.
I know that makes me sound vain and I should be just thinking of trying to sort the pain out instead of my weight

 

[Jennifer]

Entocort doesn't really make people retain water unless its used long term. It doesn't have the same side effects as Prednisone. How long were you taking it for and at what dose?

Also they shouldn't be giving you steroids without testing for active inflammation first. Could you have them at least run some blood work and/or a fecal test to check for inflammation or if possible have an imaging test done like a small bowel follow through or MRI etc?

 

[Shirl]

I phoned the hospital this afternoon and the IBD nurse said she would try and get my appointment brought forward. I was worried about the Entocort for nothing. But that has been what has happened in the past.

I was on 9mg a day for approx 3 months then tapered off gradually 3 times in a 2 year period. I gained so much weight with it too. Apparently they gave me Entocort rather than Pred because it wasn't as bad as Pred for weight gain.

 

[Hope345]

that is great Shirl.
We all do a lot of worrying ... It is good to be cautious.
It will be good to find out what is going on.

 

[Shirl]

Just a quick update. My appointment has been brought forward to 30th Jan. Thanks for the support xx

 

[Hope345]

How did the appt go? What meds did they put you on? On your symptoms worse?

 

[Niks]

How did your appoint go??

 

[Shirl]

Sorry I've been meaning to update all day.

I had my bloods taken and had to do a stool sample, but he thinks it's constipation causing the pain. So he's advised me to try a low fibre diet and he's prescribed movicol. And if any of the samples show any sign of inflammation he will send for me.

I am a bit confused as I am trying to research low fibre diets and fibre is recommended for constipation? But who am I to question? I will go along with what he says and hope he's right

 

[Hope345]

constipation is painful. Hope the med. helps.

The whole fiber thing is a bit crazy. We put our daughter on a low fiber/low residue diet... not sure if it helped, but less poo is always better.

Keep us updated......oo: