Recent diagnosis of Crohn's.

[roSHEEN]

Hi everyone,

I was diagnosed with Crohns disease at the end of January 2011 after a few years of dealing with stomachaches, going to the toilet more than necessary every day and weight loss. I recently had a period of remission over the summer, and now my symptoms seem to be flaring up again. I am currently on 400mg of Pentasa, 2 iron tablets and 4 Prednisolone a day, decreasing to 3, 2, 1 and eventually non over the next few weeks, but as such my symptoms don't seem to be getting much better. There is a small improvement, but nothing to make me say-yes this medicine is working for me...I am on my third week of Prednisolone.

I am so happy that I've found a place where I can share my problems and worries with other people who are going through the same thing. I know that symptoms of any disease varies from person to person as, after all, we are all different, but if anyone has any similar symptoms of experiences to me I would be so grateful if you could let me know and the course of treatment that your doctor has recommended to you, just to get a gauge on what I am to expect...

I think only now am I realising the extent to which Crohns will have an effect throughout my life...since it is only manageable not cureable. But having a place to go to where people have had the same experience helps me that little bit to know that I have some form of support from people in similar situations.

Thankyou all in advance, and I hope we can help each other.

 

[CDDad]

Hi rosheen,
Welcome to the forum. I assume those Pred tabs are 10mg each so your 40mg is a pretty good dose. That always did the trick for me, but I would stay on 40mg for a few weeks, then start decreasing slowing like by 5mg per week. Some docs like to use Pred as a quick hit and out, like you describe, I guess to reduce the side effects.

If it's not working, you may need some stronger meds like 6MP, or Humira. Are you on the iron because of anemia shown on your blood test?

Best of luck to you in getting this under control.

 

[ameslouise]

Hi roSHEEN and welcome!

You have come to the right place for support and advice! If you have a question, likely you will find someone here who has been thru exactly what you are going thru. It's comforting to know you are not alone!

I agree with Joe that 40mg should be doing the trick. Does your doc have a plan to put you on something harder hitting than the Pentasa?

- Amy

 

[roSHEEN]

Yes, I originally had the iron in a liquid form but found it was hard to swallow so switched to tablets. I've found since I've regularly been taking it i've had more energy and felt less tired so I hope these are doing the trick and helping. I've yet to have more blood tests to determine if they are though.

I'm due to see my doctor sometime in April where I'll discuss the dosage and if it's helped me...I want to wait and see a little bit since it has reduced my symptoms just not as much as I was expecting, so I'll see how things go. I had a little bit of a problem ajusting to the first dose of Preds though so really hoping I won't have to increase the dosage again!

Thanks for your help

 

[Peri-Annie]

Hi Rosheen

I know its not nice to be diagnosed with this but at least now you know what you're facing, that you're not going mad or a hypochondriac.

I've just joined as well and it is hard to feel comfortable with people outside of this illness, so I hope that we have now found our 'square hole' to fit in.

kind regards

Ann:getwell:

 

[margie]

Hi roSheen,
Welcome to the forum. You are now among many very caring and loving members who know exactly what you are going through.

Hope you feel better soon.

 

[xJillx]

Welcome roSHEEN! Treatment for Crohn's can be tricky. It can take sometime to figure out what works best for you. Like me, it seems like your doc is starting with a bottom up approach, starting you with milder treatment. And I am sorry it hasn't been really doing the trick. Have you started tapering down off the pred already? If so, like Joe suggested, you may not have been on the highest dose long enough. If symptoms really start to come back, you need to phone your doc.

 

[hope4]

Hello, I thought iron supplements cause more diarrhea. It does for me. Anyway I wanted to try a Alternative medicine route before going on meds just to see for myself if it could make a difference. I was lead to the SCDiet and after one month on this diet all my symptoms were gone except excessive gas which I know is from certain foods I eat too much of but better than D and blood, pain etc! so far I still take no drugs!

Rox

 

[Jennjenn]

Hi welcome

I hope the meds work for you. As far as the iron, I go for iron infusions and my #s are going up slowly. My iron storage for the ferritin level was almost depleted. I am glad you found the forum and find that there is plenty of friendly people who have helpful information and are very supportive.

 

[Beans]

Finding the right medication/therapy is a journey! After my initial diagnosis and stint on prednisone, I tried 4.5 mg of Naltrexone. It slightly reduced my symptoms but didn't work for me. After five months on that I switched to Flagyl. It worked great for 5 months and then I started flaring again. I just switched this week to Imuran. Will cross my fingers it works with little side effects.

My preferred approach was try to drugs that would have minimal side effects. But in the end they just weren't strong enough to control the illness.

I, also take a liquid iron supplement ("FloraVit") and it is slowly raising my iron stores.

Good luck to you in your journey. I hope it is an easy one!

 

[roSHEEN]

Thankyou all so much, any information is very helpful for me

Jill, I think you're right but it doesn't seem to be doing much for me so I think I'm going to ring my doctor tomorrow to speak to him about it. It has reduced my symptoms a little but I'm yet to go to the toilet only once a day so maybe things aren't getting better? My stomach cramps seem to have reduced dramatically though and I do have a hell of a lot more energy then I used to.

I think i'm starting to realise this is something there is no quick fix for, especially hearing some of the treatment courses you guys have already gone through!

 

[xJillx]

To be honest, you may not return to the bathroom habits you once had prior to diagnosis (once a day). You may have a new "normal" with Crohn's. So, even though you may be going more than once a day, you could still be improving. But it wouldn't hurt to touch base with your doc. But big indicators of issues in the bathroom are lots of D, blood and/or mucus. So, if you notice that, absolutely ring your doctor.

And, you're right, there is no simple treatment plan for Crohn's. It can take awhile to figure out what works best for you. It can be worrisome, but there are a many more options than there once were. So, I try to take comfort in that.

 

[roSHEEN]

Hi guys,

just thought I'd let you know, now on the fourth week of pred and for the past week have been feeling miles better! I still have the odd moment every couple of days or so but it doesn't last for long, at most a couple of hours and it doesn't drain my strength away like it used to. It's strange, it just seemed to suddenly clear up in a matter of days, but I'm not complaining that most of the symptoms have gone!
Hopefully it will continue to get better, but in such a good mood that it seems to be clearing up again. I know that my story is mild compared to some of the others i've read in here but I also know that everybody going through Crohn's knows at least some of what others are going through, and can relate.

Just want to tell everybody to keep the faith-you will get better eventually!!

 

[Jer's Girl]

Thanks for checking in roSheen! I'm glad that the pred is starting to work for you. Welcome to the forum!