Newly diagnosed and scared

[DawnG]

Hello, I was diagnosed about 3 weeks ago. Had a meeting with my GI doc last week and was told my options for treating are: Humira or Remicade. I am currently on Prilosec and Entocort for 3 months. My symptoms have seemed to get worse since my diagnosis. Lots of nausea, fatigue and now swelling joints and pain, not to mention bloating. All part of the disease process. My Crohn's is located at my terminal ileum. I am returning on the 27th to my GI doc. We will most likely do the pill cam too to see if the ulcers go any further.

I am so nervous about treatment. I am a RN, so my head runs through all scenarios. At this point, I am leaning toward starting Remicade. Any advice?

I am also looking into diet ideas. I am actually a vegetarian...so, ideas or successes relating to that would be greatly appreciated.

Thank you in advance. So glad I found this group. So hard to explain to someone who doesn't have the disease what it's like.

 

[DJW]

Hi and welcome.

It takes a bit of time but with treatment you should be feeling better soon. Keep in mind serious side effects are very rare. I started remicade last September and I'm seeing improvement.

I'd suggest keeping a food and symptom journal to pinpoint problem foods. We all have different problem foods. I ban eat any veggitable as long as it's very well cooked.

Sending you my support.

 

[DawnG]

Thank you! It is great to hear good things about Remicade. I will keep that in mind.

If you don't mind me asking, do you have to do this for a lifetime? Or, have you been able to have a break with remission? I know it's so individualized but I am just curious.


Thank you again.

 

[DJW]

I was diagnosed with severe crohn's. But I did have 20 straight years of remission.

Right now there is no cure but there is a lot of research going on around the world.

 

[DawnG]

That's good to hear and gives me hope. Thank you again for your time.

 

[RNGirl]

Hi DawnG,

I am an RN as well and newly diagnosed within the last year. I was also put on Entocort for 3 months after diagnosis and got worse too. Nausea, joint and muscle pain, fatigue, foot cramps and generalized malaise. While weaning from the Entocort, was started on Pentasa. I reacted very poorly to both meds and had a very bad reaction to Pentasa. My crohns is isolated to the terminal iliem. Yes, being a nurse makes you hyper vigilant regarding meds, side effects etc. I have a pretty pure system and react to all meds in a big way, almost need pediatric doses to not overdose. I currently don't take any crohns meds, just an all natural vitamin, extra vitamin D and a calcium supplement. Started the auto immune Paleo diet 5 months ago and transitioned to a modified Paleo diet with foods I can tolerate. I am fortunate I can currently get by with diet and feel generally very well. I'm not kidding myself, this won't last forever, but want to try diet until I have no other choice.
Sorry you have to go through this, I'm still trying to wrap my arms around my new diagnosis. Take care,

RNGirl

 

[Justanothercp]

DawnG
Ive been on Budesonide, Lialda and Remicade for years, and it's kept me going. I've had no bad reactions. I work full time and feel pretty good most of the time. I do believe I will need another resection at some point, but the Meds have been working pretty good since my first resection which was 13 yrs ago. I wish I had some diet advice, but I found paleo works wonders for me, and that includes a lot of meat.... But cutting all grains, dairy and legumes made a big difference for me.
Good luck.

 

[DawnG]

Thank you both. I am looking into both the paleo and SCD diets...maybe I can find a happy place there. To eat again without nausea would be awesome!!!
Again, appreciate all your advice.

Best of luck to all of you.

 

[highlandsrock]

Hi Dawn

Sorry to hear you've joined the ranks of Crohn's sufferers. I was diagnosed so long ago I can't remember how it felt but I didn't have the luxury (curse) of the internet. I imagine the temptation nowadays is to read as much as you can on the subject. There's a lot of support to be found on forums but I tend to think of them a bit like Accident and Emergency, they're somewhere you go when you have a problem, so will tend to be skewed towards the negative.

If I can give you an overview of my experience of Crohn's. Once the medication was sorted out I was able to lead a pretty normal life with a lot more good years than bad. There was a long period when I was effectively, but not technically, in remission. I'll be honest and say that I had a couple of bad patches, the worst being in 2009/2010 but by keeping positive I've treated these setbacks as learning experiences and I'm now in clinical remission and taking no Crohn's medication.

Good luck with finding the right meds for you. I wish you well

 

[DawnG]

Thank you. So glad to hear that some of you are having good outcomes despite all the struggles.

 

[sweethomeswing]

HI Dawn,

I am newly diagnosed with crohns as well. I am not taking remicad but taking budesonide. THe medication is not working for i got my first anal abbess. I am pretty scared of what is to come, and pretty frustrated with my doctor. I am going on biologics soon. Hang in there, and know that you have a huge support group here.

 

[DawnG]

Thank you sweethomeswing! I am super frustrated this week. My joint pain has started again. Still waiting on referrals to Rheumatology and a MRI visit. Getting discouraged with all the waiting, tests, returning. But, it seems like this is what happens with this diagnosis huh?

Keep us posted on how you are doing. I hope you do well on the biologics.

Best regards.

 

[RNGirl]

Hi everyone,

As we all know, Crohns is such an emotional roller coaster. Today was emotionally bad for me. I'm losing weight on the Paleo diet, trying to transition to a more "normal" diet. Probably at my perfect weight, just don't want to lose any more. Seem to be having more food intolerance issues. Highlandsrock, any advice on how to maintain a normal life without crohns meds??