I feel lost

[StormyWeather]

I am very new to this disease, at least as far as being one who suffers from it.

I was officially diagnosed on December 19th, 2011. An early Christmas gift I must say, instantly starting Crohn’s therapy which involves swallowing 8 Pentasa tablets a day. (500mg)

When I started the many tests which included a Colonoscopy, Upper GI small bowel follow through, then the Capsule Endoscopy, I honestly thought I would come out undiagnosed. I guess I was simply hoping. My father suffered from Ulcerative Colitis, and if anything I believed I would have that. I was truly shocked to learn I had Crohn’s Disease.

Since my diagnosis, things have definitely changed. I am noticing now that some foods bother me to the extreme. I can no longer enjoy lactose. In fact it is one of the worst intolerances I seem to have. With the holidays came all sorts of goodies which I was very much able to enjoy last year and all the years prior to this one. This year however; within a very short time frame of having my favourite deserts came unbelievable pain. Anything that had cream, dairy, chocolate, nuts, or any form of taste to them sent me reeling with discomfort. And to top it all off, the stress factor of burdening my loved ones and feeling sad due to how my disease seems to be impacting their lives on a negative scale made the pain even more unbearable. Stress affects my pain levels like nothing else. And the more I cry and need that compassion and understanding, the more I am pushed away and scolded for feeling the way I do.

I am scared of this disease. I am terrified of what life will be like for me now, and whether or not I will have anyone I can call supportive. No one understand how I am feeling, and when I ask questions about the future, I am told I have to stop thinking about the “what if’s.” I am scared. I feel insecure and alone. I wish my dad was still with us so he could be my shoulder. He battled Colitis for years, and if anyone could understand the pain I am dealing with, it would be my dad. I lost him to Leukemia two years back, and with him being the only person in my family afflicted with an IBD, it makes it difficult to feel like people understand.

I have decided to start a food journal, hoping this will help me. But so far it seems I am bothered by food, as a whole. I enjoy meal replacement drinks such as Ensure. I am hoping they are ok for me and will not cause the same symptoms food seems to be causing.

I have a new respect for anyone who is battling an IBD. It is definitely an eye opener for me. I am only hoping at some point, I can figure out a way to live with this.
:frown:

 

[Astra]

Hiya Stormy
and welcome

Sorry about your diagnosis, no time of year is a good time!
I've been on Pentasa for nearly 6 years, it's ok, but very mild. Depending on where your CD is, a short course of steroids may help to get the inflammation under control, and Pentasa will act as a maintenance med, an anti inflammatory. Keep up with your food journal.
Try not to fret about the future, live in the day, in the moment, anxiety will make you feel worse. This isn't a death sentence, it can be managed, not controlled as such, but there will be good days too.
I hold down a full time stressful job, and I know stress can trigger me too.
Hope you find comfort here with us, we understand everything, you're no longer alone.
Lotsa luv
Joan xxx

 

[StormyWeather]

Thank you so much for those words. Most of my pain and inflamation lies where my large intestine meets my small instestine. So the majority of pain is in my lower right side, however; not limited to that one spot. Steroids scare me so badly, especially Prednisone. My father had some really horrible times with that drug, and although he was a different person with a different disease, I am terrified to the point of nightmares. I feel a huge amount of guilt when I eat something that causes me pain, like I should have known it was a bad thing to do. But this is so new, that I really do not know what all will make me sick. I have read a lot, so I do have the upper hand there.

 

[Jessi]

Welcome to the family, Stormy. :hug:

I'm sorry that your holidays had to be spoiled with a new diagnosis and food intolerances. It's really a terrible time of the year to be new to this. Everybody brings food to me, too. A lot of people tend to think that I need a cheesecake diet to put some weight on.

It's very normal to have some anxiety over your new life, but if you think it's out of control, you should seek help from your doctor. I have had quite a bit of building anxiety and "what-if's" since getting this wretched disease, so my GI put me on a daily anxiety pill with a stronger one to take rarely on the bigger days. It's helped me a ton.

It's fabulous that you've started a food journal. And if Ensure seems to be the only thing that works for you for right now, then stick with it. Check out our enteral nutrition forum. There are many on the same diet.

What Joan (Astra) mentioned above, you're not alone. Chat with us as often as needed.

 

[Astra]

Hiya again Stormy

Your CD is where mine is too.
I had nearly a year on Pred, it healed me good and proper, but ...when I flared again the doc gave me Entocort (Budesonide) this is also a cortico steroid but is non systemic.
It only goes to the area where the small intestine meets the large, unlike Pred which goes thro the whole system.
Entocort was very effective, minimal side effects and I frequently use it with my Pentasa when the going gets rough!
The usual dosage is 9mg for 8 weeks, 6mg for 6 weeks and then 3mg for one month, no need to taper.
Think about it to get you back on track
xxx

 

[hawkeye]

Welcome to the forum. It's a great resource. Not sure where you are in NB, the Crohn's and Colitis Foundation of Canada is another gppd resource, they have chapters in Moncton Fredericton and Saint John.

Hopefully the Pentasa will kick in soon. I have been on Salofalk (5-ASA) since I was first diagnosed in 1990.

I know there are alot of potential side effects with prednisone, but it does have the ability to get things under control very quickly, despite the side effects.

Do you have a follow up appointment with your GI?

 

[StormyWeather]

My GI told me he will see me next year, unless of course I have a flare up. In that case I am to call his office for an appointment. But what is a flare up? Will I know when I am having one?

All he really said to me was try 10 days without lactose and see how I feel. That seems pretty simple. However; it does not seem to only be dairy products that affect my stomach. Today I have eaten very little, and yet I feel horrible. I am confused as to what is what, and I am not sure what normal is for someone with Crohn's. I have always had sensitivity to foods, just never this severe.

 

[Cross-stitch gal]

Welcome Stormy When I was diagnosed with UC it wasn't easy on me either. I was the first that I knew of in my family to have UC. It took quite awhile for me to find out what I could and couldn't have. Since I was diagnosed with Crohn's this last year I've been having to relearn my body all over again. Hang in there. If you need someone to talk to let me know. Lisa

 

[Sarah84]

I know exactly how you feel

Hi Stormy,

I am having exactly the same enotions at the moment. I was diagnosed on the 20th December 2011 with crohns disease. I had been suffering for a while but didnt know what it is and when I mentioned it to my doctor he got me sent to a consultant who got me in for the colonoscopy and I found out the same day.

I shouldnt have really been surprised as my Dad had crohns too, so the chances were with my symptoms it was likely but it has still shook me up and I also feel like this huge weight has been placed on me. All I keep hearing is that it is manageable and that I'll be fine but I saw what my dad lived through and all the operations and it scares me. My Dad passed away 2 yeard ago and I would give anything to have he support me through this, I feel like noone really understands.

I started prednisilone on the 23rd December and the chemist said I could drink, I had one drink that night out for my friends birthday and it made me violently sick for about 4 days. I started taking them again on Friday but they have given me omerprazole aswell this time. I am not going to drink on them too just in case it was that which made me so sick. I have also been given buscopan for the stomach cramps although these barely do anything yet.

The main issue I have had with the tablets so far is I can't sleep on them, I think I've had about 7 hours in the past two days, which is not good given I am back at work tomorrow. I am hoping I wont have to be on them too long.

I have started a food journal too but I feel like its everything atm too, I am hoping this is just because its flared up and when its under control it will be better.

If you ever need anyone to chat to, just drop me a line. We might be able to provide tips for each other a long the way.

Hope you are not feeling too bad

Sarah

 

[QueenGothel]

I have a 4 year old with UC. I am new here also. I just found out today that B vitamins are huge in controlling stress and anxiety. I know this is a stressful disease but make sure your not deficient in B complex. It really can help your mood and stress. Best of luck to you. I wish you good health in 2012. Most crohns and UC people are deficient in B vitamins especially B12 but all the bs are good. Davids post about vitamins is a good place to go.

 

[hawkeye]

My GI told me he will see me next year, unless of course I have a flare up. In that case I am to call his office for an appointment. But what is a flare up? Will I know when I am having one?

All he really said to me was try 10 days without lactose and see how I feel. That seems pretty simple. However; it does not seem to only be dairy products that affect my stomach. Today I have eaten very little, and yet I feel horrible. I am confused as to what is what, and I am not sure what normal is for someone with Crohn's. I have always had sensitivity to foods, just never this severe.

In terms of having a flareup, if your symptons get worse, I'd call him. In terms of diet, everyone is different. It may help to stick to a bland diet for a bit - chicken, scrambled eggs, white bread, rice, crackers - if you search the forums there should be some threads on this.

 

[David]

Hi Stormy and welcome! I'm so sorry to hear what you're going through. I don't really have anything to add as the wonderful folks above covered it well but wanted to chime in and say hi. We're here for you anytime and most importantly, we understand and feel you.

:hug: