Introductions

[Phoenix]

Greetings to all, I hope all is well or close to it and will be soon. I'm new here and new to all this, trying to figure out how to use a Forum for the first time.
My story is relatively simple, I've never really had intestinal or stomach problems aside from the occasional cramp or change in "pattern" but the week before Labor Day this year, I had some slowly increasing pains that I attributed to gas pains because it runs in the family. It progressively worsened over the weekend. I couldn't eat or sleep or hardly move, felt like someone was tap-dancing on my stomach. I went to the hospital early labor day morning thinking I had an appendix or gall bladder problem, they did an MRI and said I had inflammation in the terminal ileum or ileitis which the doctor immediately attributed to Crohn's or Ulcerative Colitis. He put me on an antibiotic and a weak pain killer and scheduled me with a follow-up with a GI. From that point on, I had a colonoscopy, an upper GI barium imaging. They found a benign polyp in the colon and removed it, as well as some "ulcerations" in the instestines like veiny striations which he attributed to the pain killers or pill combinations. He has told me I have Crohn's and put me on Pentasa CR and Prednisone, I am about to start Cimzia and he said he will wean me off of the Prednisone and maybe Pentasa, I'm kind of overwhelmed here and not exactly sure what's going on, I've been asking questions but everything has been going so quickly.. I can't complain about speed really, this doctor is on my heels pushing to get things moving quickly, within a month I've trudged along and am about to complete the Prometheus test to find genetic markers. I also am scheduled for an upper endoscopy next week. I'm sorry I don't know all that much, I'm 24 and I've been trying to read and catch up but at the moment I'm just.. stuck in limbo and trying to comprehend all this and deal with a very demanding job. I also apologize ahead of time if I don't respond quickly on the board as I'm still getting accustomed to using it.

 

[Crohn's 35]

You found us Phoenix! :bigwave: Glad you posted your story. It is over whelming but help from people your own age group, Country to give you support and you can ask us anything, there is no reason to feel embarrassed. YOU didn't create this so best way to learn is here.

There was no computers in 1992 and I had to go to libraries and pharmacist to get info. I have learned more here then I ever did in a book but they help outsiders who really want to support you. You have a good team of Docs getting you help, wished we all got that. I agree with getting off Prednisone as when having tests it can be a false negative. Evil drug anyways. Pentasa would be safe until the Cimzia kicks in ,like all the biologics they arent instant.

Hope to see you around!!

 

[Phoenix]

You found us Phoenix! :bigwave: Glad you posted your story. It is over whelming but help from people your own age group, Country to give you support and you can ask us anything, there is no reason to feel embarrassed. YOU didn't create this so best way to learn is here.

There was no computers in 1992 and I had to go to libraries and pharmacist to get info. I have learned more here then I ever did in a book but they help outsiders who really want to support you. You have a good team of Docs getting you help, wished we all got that. I agree with getting off Prednisone as when having tests it can be a false negative. Evil drug anyways. Pentasa would be safe until the Cimzia kicks in ,like all the biologics they arent instant.

Hope to see you around!!

Thank you for the warm welcome. I have heard all of this bad stuff about Prednisone, maybe it's the one that has dried out my skin so much I don't know. Other than that, the only side-effects I have had are.. a bit more anger than usual but I'm not sure if that's because I'm confused and upset about what is happening or if the Pred is making me aggressive. I've also noticed these.. bouts of sulphur burps that really irk me, I end up refunding my meal and they usually go away not long after that. Thank you so much though, I was actually learning quite a bit by googling things and CrohnsForum kept popping up with answer snippets I needed so I know it's time to get involved!

 

[Del]

Hello Phoenix and welcome to the forum..if under not so nice circumstances..
Take your time a scroll through the numerous threads that will give you plenty of information to help you get your head around this disease...

I have only recently been diagnosed with the disease myself and am coming to terms with it myself. Good you are getting dealt with quickly as some people here can testify to very slow diagnoses that can last years.
And ask questions here if yo are unsure about something...we are all in the same boas just depends where in this boat you are..
Take care...

 

[Phoenix]

I appreciate the time welcome and advice, Del. Its a shame we all have to deal with this disease but I can't begin to express how comforting it is to see so many others who have to deal with the same problems. I wish no one had to bear it, but at least we cab support each other.

 

[zilla7777]

Hey, welcome to the forums! You came across a nice forum here, it's so helpful! Sorry to hear that you are under the weather but it does seem like the pred is messing with you. I'm on it at the moment and It dries my skin out, makes me angry and hyperactive, joint pains everywhere, been sleeping around 3-4 hours a night for the last week or so and thats only the beginning of the side effects! Guess you gotta have a love/ hate relationship with it. I would sure rather have these side effects than wither away to nothing. Take it easy and I hope you start to feel better soon! It's tough when you have no idea whats going on, but learning about it will sure help you cope.

 

[Jessi]

Hi and welcome to the family, Phoenix. So sorry about the whirlwind of life-changing events you have to go through. The disease is a butt-kicker, but not a death sentence. Like Pen said, we are so blessed to have the medicines and the technology that we currently have.

Prednisone makes a lot of people lash out in anger. It also causes depression for many. Soon you may notice a great big belly and round cheeks (moon face). Acne is another thing that may pop up. The joint pain - especially in the knees - is one of the worst things. If you can't handle the pain, use tylenol (no NSAIDS) and a hot compress. How many mg of Pred were you prescribed?

You'll have to play around with different menu items to find out which things are making you feel sick and gassy. Keep a journal to record which are your safe foods. Everyone is different, but lactose or gluten are prob foods for a bunch of peeps.

Again welcome. I'm glad you found us. Hang in there and keep us posted. :hug:

 

[Phoenix]

Thanks for the support, Jessi. I think I have been fortunate because I have only really dealt with dry skin and aggression. I have always had aches joints though. At the moment I am only on 10mg/day of prednisone and Cimzia start this this week which my GI said he will wean me off prednisone. I do keep track of food reactions, herbs, movements, etc.

 

[Jessi]

It looks like you got lucky!

Dry skin might be a pred thing, but I never associated mine to the meds. I have had psoriasis since I was 17 (and am now 35). It's actually pretty common for people with IBD to also have psoriasis. These auto-immune diseases go hand in hand, unfortunately for us. Hopefully, yours is just dry skin, and nothing more.

 

[Astra]

Hiya Phoenix
and welcome

It is overwhelming to start with, but to get an idea of what your doc is doing research the Top down vs Step up approach.
Top down = to blitz the inflammation with a biologic, Remicade or Humira
or the more conventional way
Step up = blitz the inflammation with a cortico steroid such as Pred, with an immuno suppressant such as Imuran or an amnio salicylate such as Pentasa.
good luck and
lotsa luv
Joan xxx

 

[robbo87]

Hey and welcome to the forum, hope things get sorted for you soon. You've certainly found the right place to come. The people on here are great.

 

[Phoenix]

Thank you both for your welcome as well! Astra, I very much appreciate the input! I had never heard the term before, that has been my only problem with my doctor. He is very quick about getting procedures set up and meds started before results are in -- but even when I ask questions he doesn't really.. answer me entirely or he does but not in a way I can understand. I keep asking but he keeps telling me it would be better if I read as much as I can about it and then I'll understand more.

 

[kiny]

Hey, reading material is easy to find, the lancet, pubmed, medscape, those are peer reviewed articles so you are able to put a bit more faith in those than HowICuredCrohns.com. Access to those sites is easy to get if you're still in school, any biology teacher / uni / college will fix you up with access. Otherwise ask a friend who is in school or a teacher you know.

Asking questions to doctors who aren't treating you at the time of the disease is hard, they will avoid almost every question because anything they say makes them accountable, lucky for us most scientists are much more open with info and it's not too hard to find someone to confide in.

I used to have anger issues, headphones with some soothing music tend to work wonders for me. I carry them with me wherever I go.

 

[bjeffrey]

Hello!

Good as fast as YOU want to!

I was dx with crohn's disease in 1982. 29 years later, I can say, diet has alot to do with symptoms. Eat the purest unprocessed foods. It took me 28 years to finally decide to take humira, even though Cimzia was offered. Google everything the doctor tells you! It seems the doctor is very aggressive with your care, like you, we're questioning is this the 'right treatment' and whats he motivator, to see you well or to help the doctor with his own agenda? Shop around for 2nd opinions if you can! Stay in control of your care and be an informed consumer! If I can help in anyway, please ask.

jeffrey

 

[Astra]

Hiya Phoenix

Good luck with your new diet, hope it all works out for you.
Just my 2 pennies worth here, but I have felt soooooooooooo much better since I packed in all red meat. I only eat salmon and chicken now.
It can get boring but it's been bloody worth it!
I wouldn't touch a Macky D if you paid me!
Besta luck
xxx

 

[Phoenix]

Hiya Phoenix

Good luck with your new diet, hope it all works out for you.
Just my 2 pennies worth here, but I have felt soooooooooooo much better since I packed in all red meat. I only eat salmon and chicken now.
It can get boring but it's been bloody worth it!
I wouldn't touch a Macky D if you paid me!
Besta luck
xxx

At least we have that in common except what upsets me more is that I have never liked McDonald's ever.. even as a child who loved cheeseburgers my mother thought it was amusing that I would spit up anything she gave me from McD's. Drives me nuts that I've always ate mostly healthy but now it's time to tighten up and eat ONLY the good stuff.

 

[Jessi]

Wow, Phoenix. I am wildly impressed! From the sounds of it, you've got all the confidence and motivation to really pull this off. I really hope this does nuthin' but good for ya! Definitely start a thread on this. I bet a lot of people would chime in and be inspired by your decision. :hug: Good luck!