HI! New to this forum and new to this thing they call Crohn's!

[STLGirl]

After months of dealing silently with pain, weight loss, no energy, etc my precious husband and I decided it was time to make a trip to the ER. After a few yuky tests (CT scan, colonoscopy) my Dr told me I have Crohn's! OK, so what is this Crohn's. I could hardly wait to get home to google it! And that's when I found you all!

After three days in the hospital with IV's, starting the AWESOME Prednisone and Flagyl I felt great. It's been a few weeks now and I'm off the Flagyl and slowly tapering off the Prednisone. I'm at 40mg a day now and lovin' life! I have so much energy and feel better than I have in years. I wonder if I have had this for awhile and didn't know it? I'm thinking yes!

The area in my colon that's giving me problems is the Sigmoid area (the end). It was so inflamed and full of yukiness I couldn't go big potty for over a week , hense the ER trip!

I can eat anything I want, they told me no food restrictions and so far I have and nothing has triggered any problems.

I have so many questions like.........once I'm off the prednisone, will problems start again? What can I do to make sure they don't? I have a sore in my mouth is that from the Pred and what can I do to heal it? Can the problem area go higher up my colon or does it typically stay at the original spot?

I feel blessed to feel so good right now, with my new found energy, I have organized every closet, drawer, cabinet, cleaned our home from head to toe and I'm a cooking fool! My husband and 3 children just laugh at me and call me Prednisone wild women! BTW, I forgot to say, I'm 54. Most of you are so young and bless your hearts for having to deal with this during some of your most wonderful years of life. I already admire so many of you

So, I look forward to getting to know you all better and learning from your experiences. Thank you all for sharing from your hearts!

~Sara

 

[DustyKat]

Hi Sara and :welcome:

I'm glad you found us!

Everyone is different in their symptoms and their response to treatment. If you don't have any problems coming off the Pred then generally you progress to some sort of maintenance medication. They may start this prior to you finishing your Pred.

Here is a link to thread about mouth ulcers...............

http://www.crohnsforum.com/showthread.php?t=12123&highlight=mouth+ulcers

Unfortunately with crohns it can affect you from your mouth right through to your anus so it does have the ability to move around. Some people have it in the same general area all the time, where with others it can skip around a bit, no telling who is going to get what though.

It's so great to hear that you are doing well and I hope it lasts that way for a looooooooong time. Stick around and browse through the forums and if you have any questions just fire away, nothing is TMI! Good luck and welcome aboard!

Take care,
Dusty

 

[Astra]

Hi Sara
and welcome

Your story sounds like mine! And the same area too!
I was on Pred for 10 months this year after an infection, and I was saved with Metronidazole (Flagyl). I believe this med gave me a sore tongue and mouth and a metallic taste in my mouth, might be what you're experiencing?
About the Pred, there's a good chance it will heal you nicely, and if your symptoms come back once you taper down, you can up the dose and start again. This is how I did it, and I stayed at 50mg for a month then tapered by 5mg every month til zero, once I got to 15mg however, I flared up, so upped it up to 20mg for a month and so on.
I loved the speedy wizzy feeling with Pred, the energy it gave me was ace!
good luck with everything Sara, hope you stick around
lotsa luv
Joan xxx

 

[Manzyb]

Hi there! glad you are feeling well!

That is great you got a diagnosis so quickly!

The disease can go into different areas of the intestines, it doesn't always just stay in th original place. I guess in some people it may though, everyone is so different with this diease.

I use to get mouth sores too. I think it was from prednisone, they gave me some type of lozenge thing to help with that. That and I used a lot of mouthwash to keep it clean.

You may want to ask your doc about a maintenance drug. Many of us are on drugs to keep flares at bay. Good luck to you! I'm glad you found us, this place is great!

 

[STLGirl]

Thank you all for your kind words and knowledge. This will be so great being with you all. Astra, that's cool our troubles are in the same area, I hope you don't mind if I run to you for some private advice or questions. Oh, I was wondering where you all are filling in the information about surgeries and drugs you are on so it shows up on your posts? Is it the signature area on my profile? Sorry, I'm new to this forum stuff!

 

[Nancy Lee]

Hi Sara and welcome to the forum!!
Yes that wonderful Prednisone makes you zip around
like a mad woman and gee, you feel like you don't need sleep either.

As you taper off that feeling will ease,
but hopefully in the meantime it will have done it's job!!

To edit and have your meds etc at the bottom of your post...
Look up in the darker blue banner second from the right...Quick Links
Click on that and go down to Edit Signature.

That's where you can add your changes.

All the best to you,
Welcoming hugs~ Nancy :hug:

 

[Dexky]

Welcome Sara!! Your positivity is good to see. I hope you can keep it under control and remain in remission for a very long time. Best of luck to you....and GO CARDS!!

 

[STLGirl]

Hi Mark, I was just reading a post you had on mouth sores yesterday and I took your advice and got some B Complex, so thanks Also, are you located in Louisville? Our youngest son goes to college there. I'm in love with L'ville And......Oh I'm glad to see you're a Cards fan, we are HUGE fans in this household too!

Best to you and your EJ, thanks for your kind words.

~Sara

 

[archie]

hi i'm glad you've found this forum it's great to get the actual story of crohn's from real people and the diversity of the disease...

I too felt immediately better with the pred and was like a mad women on the higher dose, felt 100% better, got the house ship shape bla bla bla. Once you taper to the lower levels this might diminish a wee bit but it will have hopefully sorted out the inflamation in the process. The mouth ulcer maybe due to the flagyl it's ROTTEN!!! good luck and hope you continue to feel good.

 

[Dexky]

Hi Mark, I was just reading a post you had on mouth sores yesterday and I took your advice and got some B Complex, so thanks Also, are you located in Louisville? Our youngest son goes to college there. I'm in love with L'ville And......Oh I'm glad to see you're a Cards fan, we are HUGE fans in this household too!

Best to you and your EJ, thanks for your kind words.

~Sara

I'm in Bowling Green Sara. I like Louisville too!! My wife has relatives in St. Louis. We were there this summer for a game. Great town!!

 

[STLGirl]

Well, an update on me......a month after being diagnosed! Tapering off Prednisone went well until I hit 20mg and then the pain started back in my trouble spot (Signoid area). My Dr wanted me to call him with ANY changes, so I called and he had me go back to 30mg yesterday. He wants me to stay on that dosage a bit longer and then try tapering again. I had pretty bad inflammation and he said it will take awhile to go down.

My question is......last Monday I had a Dr visit with my GI and he wants me to start Remicade as soon as we get the insurance approval. In my mind I was thinking that was pretty radical to start Remicade first and not try other long term treatments first. From what I read here, it seems Remicade is the "bad ass" drug used when everything else fails. Am I wrong? What do you all think? Have any other of you all started Remicade from the get go?

 

[carrollco]

I was just diagnosed on Sunday and already my doc wants me on Remicade. I too think that's a little extreme. Am I wrong?

 

[Rebecca85]

It depends on your disease, and on your doctor's preference. If you have fistulas, then remi is probably the best drug out there to treat them. And some doctors prefer a 'top down' approach- starting with the stronger drugs to gain remission, then going to milder drugs to maintain it. Like you start on a high dose of steroids then taper off.

 

[STLGirl]

Thanks so much Rebecca for helping Carrollco and I out on that question. That makes so much sense. But I'm still scared of Remicade. Especially starting it now during flu season!

 

[crazycanuck]

Yeah completely depends on the doc. My first doc started me on asacol for 2 years an his only solutions as i got sicker and sicker was to take more or to take it more often. Due to that I went from mild to moderate Crohns, lost 20 lbs as a teenage guy, and was sick everyday. Now with my new doc she said she would have prefered me on somethong much stronger much earlier to make sure it never progressed to this state. I know everybody is different but I am on Remicade an loving it. The biggest concern is the increased lymphoma risk which increases you from approximately 1/10 000 to 3-4/10 000. Good luck and hope you feel better soon. Oh and good luck with insurance too the damn stuff is expensive.

 

[Nica]

You guys might want to check out the remicade club in the treatment section to get a better feel for remicade from users.

 

[STLGirl]

Crazycanuck.........thanks for the great info! I see your on Imuran and Remicade. My GI Dr. was telling me of a study that was done on people that were on both and they did wayyyyyy better than those that were just on Remicade alone. He really wants me to do the same but he said it was up to me. Sounds like your Dr. and mine are on the same page of thinking! I also just found out that my insurance company will pay 100%! WOW, I'm so thankful.

 

[crazycanuck]

Oh thats awesome my parents were majorly panicing about it. Im not sure if its different in the states but per shot its $4000 here so with a combo of dad's, mom's and federal insurance we are covered. And so far Ive had great success on the imuran/remicade. Everyone is very different but I do have great hope for you too. Best of luck!

 

[STLGirl]

Uh Oh.......I just called my insurance company to make sure the Dr's office was correct that they would pay 100%. Turns out they will pay 100% this year ( 23 days left) because we hit our family deductable. Starting Jan 1, 2011 we have to reach our deductable all over again and after talking to the insurance people, we would have to pay $60.00 A UNIT of Remicade till reaching our deductable again, which is 10,000! UGH!!! I called the Remicade people and they would put me on a program they have called AccessOne and they would help out by paying $4400.00 in one year. It would be a rembursement kind of thing. I'm thinking we STILL can't afford this, things are hard enough as it is! Maybe I will just do Imuran alone! I got my labs back and everything looks really good. No inflammation, no vitamin deficiency. So that's encouraging.

Crazy? Is Imuran very expensive?

 

[crazycanuck]

Oh what a bunch of useless... We had the same kind of detuctible with my moms insurance. We were going to have to come up with $3500 just to start and then be reimbursed by my dads insurance later on. Luckily we had our pharmacy front the money for us and we submit the receiept with dads insurance. When we get the money it goes straight to pharmacy.

As for imuran here it costs about $56 a month for me if didnt have insurance but I do so thats covered.

I am really sorry about this I know this is very hard with insurance companies being so useless. I believe if you search on google there are a few remicade start up programs out there too which may help as well?

Again I am sorry I wish I could be more help but unfortunately thats all I know as I get the luck of not dealing with finnancials yet. Good luck!

 

[STLGirl]

You are just too darlin'! Thanks for your sweet concerns. It's all ok though, things will work out the way they are supposed too. I have prayed to hard about all this. :smile:

 

[crazycanuck]

Well hey the right attitude anyway. I was always told growing up that everything happens for a reason. So for everything bad that's been thrown my way I know there is a reason and believe it or not it's helped me more times than I can count.

Good luck and keep us updated.

 

[Fourlocos]

My son is on the remi/imuran combo now. He has had three infusions so far and feeling very good. He just got his second bad cold since starting the imuran. That is the drug I feel suppresses your system the most to allow you to catch what is going around. He feels okay with his cold and hasn't missed work or anything so we will let the doctor know next visit unless something changes with him. We are in the same boat with access one and remistart, and having to still layout a good chunk of money we can't afford. But at the same time I agree that a full all out WAR on the disease from the onset is probably the best treatment course to take. Remission, then maintenance.

 

[Nica]

Sara,
What has your doctor said about Humira instead of remicade. Abbot has a GREAT program to help get the meds into patients hands. No money questions asked. They get your co pay down to 5 bucks a month. provided you are not on any state assisted insurance like medicare.

 

[STLGirl]

oh, he hasn't even mentioned Humira. Can you take that along with Imuran? Thanks for the advice about Abbot.
My Dr is ALL about the combo of Remi and Imuran. He said they work very well together and studies have proven it. But since my blood work up came back showing no inflammation or no vitamin deficiency and the money problem......he said for now 50 mg of Imuran is great and we will see if that's enough (no flares) while I taper off Prednisone. So fingers crossed!

 

[Mountaingem]

:welcome: Sorry I'm late to the forum, Sara! Glad you found us! I don't have experience with Humira, only Remicade, and I understand some people do use them concurrently.