First flare after 15 years - doc says take Remicade?

[TLars]

Hi everyone,

I am having my first real flare about being diagnosed with Crohn's 15 years ago. I was diagnosed because I had a little blood, which went away after a couple months. I never took medication (that's another story for another day) until 3 years ago when a CT scan for kidney stones showed I had inflammation. I went on Entocort for 3 months and then Pentasa since then.

With the exception of the blood 15 years ago, I have never had typical CD symptoms - no diarrhea, cramping, etc. I honestly have forgotten that I have Crohn's because I don't have any issues with it. I know I've been lucky.

About 3 months ago, I started having very slight pain on my lower right side. I went on a gluten free diet and the pain went away in a few days. Then it came back after a couple weeks and I added a dairy free diet to the mix (on advice from my naturopath). Several days later, I woke up in extreme pain, nausea, vomiting and was in the hospital for 3 days with a partial obstruction.

I've been tapering down on prednisone for 5 weeks and I have had pain/nausea on and off during the last 3 weeks. I only felt better when I was on a liquid diet. Unfortunately, I moved to a new city days after getting out of the hospital and had to find a new doc (stress is definitely contributing to this flare).

My new doc recommended getting on Entocort when I finished the prednisone for 3-6 months and then going on Remicade. I finished the prednisone 2 days a go and started Entocort today. I feel awful today - really tired, nauseous, bloating. Not sure how long it will take for the Entocort to kick in but am hoping it's soon. Being sick as a stay at home mom with 2 kids and a husband that travels is hard.

Anyway, so I'm okay with the Entocort for now because I took it before and had only one side effect - some blurring while reading. However, I am not sure that I want to take Remicade. I feel like there has got to be some other milder drug I can take after going 15 years without a flare. I only took Pentasa for 3 years, isn't there some drug between Pentasa and Remicade?

Thanks for listening......

 

[Keepingfaith]

Hello & welcome to the forum!


I hate that your CD was being really tamed & then decided to come back & show its colors

Considering this is your first major flare, I can understand your doctor's resoning on wanting you to go on Remicade. If the obstruction was caused by inflammation, Remicade is an awsome drug for helping with that. A lot of people, like myself use a meslamine(like pentasa) & a biologic(like Remicade). As far as biologics go, Remicade is usually the first drug to try. You could always go on an Immunomodulator first(like 6MP, Methotrexate) but those can take a few months to work to its fullest potential & Remicade is good at kicking a flare in the butt. That's something to bring up to your GI though.

Anyways, I hope you can get this flare under control & this forum is amazing & full of knowledgable people!

:hang:

 

[David]

Hi there and welcome to the community, thank you for joining and sharing your story.

I realize that you were doing great for 15 years which is absolutely amazing, but, considering the obstruction, that means your disease is now stricturing and no longer mild. The possibility of complications is now increased and it's important you get your inflammation under control. Remicade is an excellent medicine but I understand your concern. Other treatment options:

1. The step below Remicade would be Azathioprine or 6-MP. These are immunosuppressants and very strong medications. Many have good experiences with them but there are of course potential side effects.

2. Based upon your disease, I'm not going to speak of Mesalamine (5-ASA) as I don't feel they're strong enough for what you need.

3. There are some other options though. Total enteral nutrition is an amazing treatment option IF you can stick with it. I'd research it if you think you can stick with it.

4. Low Dose Naltrexone is a very interesting option you may want to research as well.

You're at a pivotal point in your disease. We're here to help in any way we can.

All my best to you.

 

[Angrybird]

Hello and welcome to the forum, I am sorry to hear that the tum has now acted up after being settled for so long I can only agree with what has already been suggested for other treatment options so do check these out.

I do hope you can be feeling well again soon, pls keep us updated on how you get on.

AB
xx