Who can I trust?

[Josalyn7]

Hello everyone!
I don't know who to trust anymore with my crohn's disease. I get told something by someone then something totally opposite by another. It's doctors, nurses, friends of friends, the list goes on. I mean everyone has an opinion and I give them complete respect for it. I'm also tired of telling people I have crohn's because 98% of them say they know someone with crohn's and their cured. Or crohns is easy to deal with. Sorry I'm in a talking mood. This disease is so new to me and I'm still learning.

 

[lizbeth]

Hello josalyn, welcome to the forum . I'm very glad you've joined the forum I know that here you will be given wonderful support from wonderful people, I know I have. I still feel new to crohns, it's just over a year since I found out and it came very much out of the blue.

There is one sure thing in this world and that's that everyone will have an opinion just like you say. I don't think there is really a cure for that one either lol. I know it's not easy but the best you can do for yourself is learn about you illness and get to know your body and what IT is telling you.

May I ask a little bit of your story, how long have you been diagnosed etc?

 

[Josalyn7]

Yeah My crohns decided to show up on a camping trip in early August last year. At that time I didn't know I had crohns. I couldn't eat ANYTHING without my stomach hating me. I needed the restroom like every 20 minutes and when I went there was blood and diarrhea (sorry) we were up in Aspen camping in the middle of no where. The closest hospital was 3-4 hours away. I'd wake up at night and have to climb out of the tent and rush to find a spot to go. Oh and not to mention the Jeeping trails we went on threw my stomach and intestines for a loop. Our camping trip was 3 days.

Finally after the three days we got back home and I was death row. I felt like my stomach ripped open. The pain was terrible I couldn't stop crying. We rushed to the hospital where I stayed for 4 days. The second day I had a colonoscopy and they saw 12 beautiful ulcers in my colon and my ileum. The GI doctor told me I had ulcerative colitis and that was all he really did for me since he was retiring, why should he care? He was awful simple as that. Frustrated and dying from pain we finally found a great GI. He took over my case and saw me for the first time in late august. He instantly knew it was crohn's disease. I lost over 40 pounds and of course gained 20 back from the prednisone. (Oh steroids)

My medications are:
Prednisone (TERRIBLE insomnia) especially when I was at 60 mg. Now I'm at 10 mg.
6-mp (going kinda bald here)
Remicade infusions (starting to question if it's working)
And like 4 others for sleep and nausea

 

[ronroush7]

Welcome to the forum.

2

 

[lizbeth]

That sounded like a fun camping trip.....not!

I had similar experience with drs. I was in hospital for 2 weeks during my first flare and only met my gi on the day I was discharged. He was also retiring though I didn't know at that time. He was very good in that he sorted tests very quickly for me (not an easy thing with the nhs) but after that was very disappointing, suggesting I had ibs! I was in hospital for 2 more weeks with another flare, though I've not stopped my first flare yet, and met my new gi who seems really on the ball (and is still dead gorgeous ) and is determined to get me a firm diagnosis and treatment.

It's so difficult when we have to rely on others for their help and then it doesn't work out. It's frustrating to get different advice/info from didn't people though I don't pay much heed to those that say "oh I have a friend with crohns and they........", I find those stories are just that, just stories with no truth. As I said before, getting to know your body and learning as much as you can about the disease and how it effects you is probably the best thing you can do.

 

[Amaze]

Welcome to the forums!

your problem is the reason why I do not tell people my condition unless they play huge daily roles in my life.

 

[UnXmas]

It's sadly true that you really do have to be careful what information you trust - including that which comes from doctors. I think as time goes on you begin to get more of a feel for things (hopefully anyway!).

It is also true, though, that Crohn's is a disease you can live with. You can't cure it, but you can live a full life with Crohn's, and compared to some illnesses and other problems people encounter in life, Crohn's is really not that terrible. (I know it can feel terrible while you're in the most painful moments though!)

Prednisone (TERRIBLE insomnia) especially when I was at 60 mg. Now I'm at 10 mg.

My doctor prescribed me Amitriptyline to counter the insomnia caused by pred, and it worked magically for me. If you have any symptoms or side effects that particularly bother you, don't feel like you just have to put up with them. Keep trying new things, and every now and then you might find something that just works for you.

 

[Axelfl3333]

You know what happens with 2 people having a conversation?a difference of opinion very frustrating when it comes to doctors.

 

[Josalyn7]

That is very true

 

[dave13]

welcome to the forum Josalyn! I'm new to crohn's as well,diagnosed 11-13,I had a resection in my duodenom and currently in remission.I have daily chronic joint pain too.I don't see my GI until mid February and I guess I'll add crohn related arthritis to my list of questions to ask.This forum is a great resource and everyone has been patient with all my newbie questions.I encourage you to use it frequently.Glad you joined!

 

[Josalyn7]

Awe Thank you I'm glad I found this place, I was feeling lost and a lone. It's scary one day your living life then the next surprise! You have crohn's!

 

[ryansbronco]

I think we all can remember the day/night that some one came in wearing a played out lab coat and said....guess what?...your a lifelong member of club Crohn's.

This forum is filled with tons of info. If you need a quick answer or just want to chat, head on over to the chat room.

Don't let this disease keep you away from camping or even jeeping. Once you find what seems to keep you on the med the world is yours. It took me a few year, but now I'm getting back to first responder training.

 

[dave13]

It takes some time to wrap your head around having crohn's.Life will be different,that's for sure.It wasn't until a few days recovering at home that it started to sink in to me.I was pretty low and felt overwhelmed by it all.Through support from the forum I'm learning more and finding out you can have a good life in spite of crohn's.We all need support to get through this.Keep the faith!