New to this SCARED, CONFUSED, WORRIED

[Chrohn's wife]

Hi Everyone,

First of all I have great respect for all of you who share your experiences and worries openly. It makes it so much easier to accept what we will be dealing with in days and years to come.

My husband had severe abdominal pain in 2008. He was admitted to hospital and tests were done with no conclusion of the cause. He was discharged and they thought it might have been a small tear or hernia after a hard days work.

Last year 2010 we had the same and ended up hospital where he was given paracetamol and laxatives. After he had bowel movement the pain subsided and he was discharged. We insisted that a thorough investigation and diagnostic have to be done and saw our GP who referred us to a gastroenterologist. A gastroscopy were done and we were given a pamflet about Colitis. We didn't even see a Dr or Specialist a nurse gave it to us.

We returned to the GP insisting on an explanation. He insisted that it was a cronic disease and that a diet wont have any affect on the condition. We weren't convinced and went to see a Holistic Health Expert and Gastroenterologist Specialist at our own expense. Both said the condition/disease should be managed with a diet.

In the meantime our GP contacted us with the full results and diagnosis of CHROHN'S DISEASE and now we are scheduled for another scope of his small intestines.

We started over following the holistic health diet approach and it seamed to be working until Easter. Not sure what he had that caused the flare up.

I have so many questions I don't know where to start?

1. What's the best diet to follow?
2. How do I manage a healthy dieat for all with 2 toddlers in the house without tempting dad to have what treats the little ones have in their healthy diets?
3. I feel so confused and scared does flare ups just occur or is it something he did wrong or ate that he shouldn't have had?

I am commited to face this and support my other half the best way I can but I feel so confused with all the different advice and contrasting statements about what we should or shouldn't be eating.
Seems like there is only 10 things left on the food chain that he can have.

Please if you read this far. Could you give me advise or at least encouragement. A hint in the right direction for our next step to live and cope with this will help A LOT

Thank you for your time and the opportunity to share this.

 

[shazz]

Wow.
A big welcome to the forum.:welcome:
I have Ulcerative colitis so cannot offer any advice on Crohns. I know that before long one of the many lovely people will be along to give you some advice.
I kept a food journal for a while. That helped to find any foods that were triggers for my flares.
I wrote down what i ate, what time, how it made me feel, did I get any cramps, how long before i needed the loo. That kind of thing.
I eventually went onto a low residue diet for a while. This is bland and plain food with no fiber or anything that will irritate. Chicken, mashed potato, white rice, white bread, cheese, milk. I think in the diet section on the forum there is a section on the low res diet.
I want to commend you for doind this much for your partner. It is hard on loved ones when we suffer.

I know you will find it hard at times but everyone is different and what works for one person may not work so well for the next.

I hope i have helped a little bit.

Best wishes and see you around the forum.

Sharon Xxxxxxxxxxxxx

 

[Robert747]

Hello there,

I am sure you will know that every case of Crohn's is different - but the advice from Shazz is spot on as far as I am aware. Don't assume the worst though - when I first had Crohn's in my mid thirties things were quite bad with two operations, etc, etc. However when I was forty all symptoms - apart from frequency - stopped. For the next thirteen years I lived a completely normal life. OK it is back now - but maybe because I stopped medication and tests over ten years ago! When things settle I am expecting another thirteen free years - at least!

So I would say - keep positive - make sensible food choices, moderation in the things we know are bad for us - keep life as normal as possible in every way.

Most important for me is having complete faith in your Consultant.

Wishing you all the best

Rob

 

[Chrohn's wife]

Dear Shazz and Robert

Thank you for both your responses.

Shazz,
I appreciate the welcome and your advice tremendously.
We have been trying the food journal but it might be more affective starting with the low residue diet and taking it from there, because it is awfully difficult to pin point exactly what the triggers are.

Robert,
That might just be it. We feel a bit lost at the moment stuck in this abyss of information with no way to guide us. I'm scheduling an appointment with another Gastroenterologist Specialist. Hopefully we can build a trusting relationship with a good Consultant soon.

MUCH APPRECIATED

See you around the forum and best wishes to you both.

 

[Ajs]

Hi and welcome, my diagnosis also took a while and I also wasn't too happy with how they handled breaking the news to me. As others have said everyone with crohns is different so you'll just have to experiment and see what is safe for your husband to eat. It took a while for the news to really sink in with me when I was told I had an incurable condition but its normal to be a little scared at first.

 

[Jim (POPS)]

Hi there, I know what you are going through and it is no fun. At first you freek out and all kinds of things start going through your mind. The best thing you can do is learn as much as possable about crohns. Some of the stuff you won't want to read, but lets face it, your story is NOT going to be the worst one in this fourm. I have only had it for less that a year. They found out while having my apendix removed and ended up with a resection and complcations. not a good story but I'm still hear and for the most part I'm doing pretty good. Find good friends in hear like "SHAZZ" she has helped me alot and there are many more like her right hear. Try and stay in the momment, if your feeling good, dig it and don't think about what COULD happen. And if things are no so good, get the help you need, take a chill pill and relax. everything will be fine with time. Make sure you ge a GI DR. that KNOW crohns, alot of GI Dr. don't deal with it much, like the one I had with Kaiser for over 15+ years, he just keep I had IBS. Make sure that your Dr. understands you and what you expect from him/her, there is nothing wrong with going to 2 or more GI's till you find one that is helping you. When I first got it I had just retired and was looking so forward to gett'n on with life then BAM, it hit me, I thought that life was over as I knew it, NOT TRUE. Crohns can do things to your body but don't you ever let it take over your MIND, you control that and nobody can take that from you. Keep possative and as Time goes on you will settle down and it won't freek you out so much. Bad times? sometimes, but the more you understand crohns and work with your Dr, you wil have much more GOOD times than bad. Remission can last for years. Right now I have a ostomy bag on my side to let my inside recover from the operation, do I like it , NO but they will take it off when they reconnect me soon. PLEASE DON"T do like I did. I stopped doing everything when I didn't need or have to. Remission is possable for everyone. I found a crohns advocate to talk to over the phone at no cost and it REALLY helps me ALOT. If you would like to get her # send me a PM and I'll call her and ask her to call you. She has a Phd. and that is her job, helping people to know how to talk to there Dr. and all aspects of treating crohns. I hope this helped. I called her last night and talked to her because I was on the mind pitty pot and when we were done I felt alot better about things. I wish you well
Jim

 

[David]

Greetings and welcome to the forum. I can certainly understand all of the feelings you're experiencing. We have a diet forum here that you may want to check out. Be sure to check out the threads stuck at the top of it. We also have an elemental nutrition forum you may want to look into.

For some, diet alone work well. For others, definitely not. There are so many factors at play. Either way, I would absolutely have regular checkups via a competent GI to monitor how your husband is doing. Even if he feels great on a specific diet, he may have low levels of inflammation that can lead to a host of problems over time. As such, for many, it's about finding a combination of diet and medicine that fits their disease and belief systems.

I wish you and your husband all the best. We're here for you.