New to the Forum - Scared

[Ali29]

Hi,

I've been reading the forum and have obtained a lot of information - this is a wonderful site and has helped me make a long list of questions for my GI. I've had a colonoscopy, upper GI, and GI Pill Cam which finally gave me the final diagnosis. I have been in a flare up since 4/2013 - almost 1 year.

I've been on Pentasa for almost 2 months. I've seen about a 50% improvement, 3-4 good days for the D, 2 really bad days a week. I also have chronic nausea which sometimes starts once I have been up for an hour or so but will always start once I have my first meal. Living on Phenergan - Zofran doesn't work for me at all. Every day I have pain in my stomach on/off.

I watch my diet, eat healthy - cheat a little with things I know don't hurt me. I drink 50-60 ounces of water everyday. I was seeing a naturopath but since my GI can't isolate the nausea, I have been taken off all the supplements.

I am afraid the GI needs to step up my medicine and am terrified at the side effects - even the Pentasa. My story is below.

I'm currently on FLMA leave as I cannot take the Phenergan and think clearly and have no energy and am fatigued constantly and my hips and back ache and over the counter meds do not help with the pain. Hoping I can go into remission before the FLMA runs out.

Does anyone have any advice? While I try my best to keep a positive attitude, some days I just feel like I have lost my life.

Thanks.

 

[DJW]

Hi Ali. Welcome aboard. Im not newly diagnosed. I'm sure someone will be along with good info. Hope you start feeling better soon.
Sending you my support and best wishes.

 

[paches93]

hey ali! i'm sort of new too; i haven't been diagnosed quite yet but my doc thinks it's in this realm of things.

you said you saw a naturopath. how was that? i'm really interested in alt practice and feel like i might benefit from that kind of stuff. have you looked into meditation/visualization? it has really helped me out a ton even though it's kind of hard to get good at. it might help with the positivity too, sometimes i feel exactly the same way and all it takes is a few minutes to set my head straight

 

[Honey]

Hi there,
and welcome. We are all individuals in our response to meds and the severity of our illness. It takes time to get the right combination for you so do not worry. Doing yoga to relax is a great idea. I found going to my local beauty shop for a facial, or massage, helps when I find the going tough at times. I did well on Remicade infusions until I unfortunately suffered side effects, and ended up in hospital with a lung infection. I am currently on steroids.
Just take one day at a time . I hope you feel better soon . Let me know how you are.
:rosette1::welcome::rosette1:

 

[carrollco]

Welcome, welcome. It is so individual. I failed all drugs until Remicade. You have to measure quality of life vs medication side effects. For me, that meant Remicade. For you it may be different. I am nearing 60 so I want my days to count. If you are young you may feel differently. Sending you (((hugs))) to help you on your path. Be careful with naturopath. I decided to go that route and ended much poorer and horribly sick. But for you it might be different. I do stay on the SCD diet because it works to lessen symptoms.

 

[Ali29]

Thank you for all your support. I tried the Naturopath for about 4 months, all of the supplements were gluten free. Since I don't really absorb nutrients, most of the supplements were drops I placed in drinks/water. Nothing really helped the Crohn's but the vitamin supplements definately did help increase my energy level and one of the sleep supplements did help. It is pricey but I was really looking to utilize natural medicines instead of the Dr prescribed ones but that did not happen.

I am trying meditation and will look into the SCD Diet. I'm so afraid of the damage the medications can do to the liver as I'm watching my father in law go through the last steps of his life due to chirosis of the liver (not Crohn's related).

I'm 59 and have 3 small grandchildren and I want the quality of life to enjoy doing things with them. :hug:

 

[paches93]

So sorry to hear about your father in law hopefully if you bring up the concern of liver toxicity to your doctor, he will help you find a treatment that works for you. Also, although many drugs are metabolized in the liver, it may not necessarily cause liver damage. Plus the benefits of doing treatment for crohns may outweigh the risk of liver problems (just stating the obvious)

 

[carrollco]

I am 59 too and my impetus is my grandchildren as well. I am on Remicade and it really has changed my life. I went fishing with 4 of my 7 last weekend. There is life after Crohn's.

 

[Ali29]

Hi Carrollco,

How has Remicade made a difference, are you having any side effects or any advice on this medication has helped? What would you say is best/worst about this medication.

I appreciate your advice.

Thanks.