Newly diagnosed and really need help!

[crohnsandcoilitis!]

newly diagnosed and really need help!

This forum has been really good to read so far and as soon as I figure it all out I am sure it will get better.
I was recently diagnosed by 1 doc with crohn's...2nd opinion said it was uc.
Needless to say in just 6 mos. I have gone through many of the drugs and am currently on the maximum dose of remicade every 4 weeks, 100 mg. of 6mp and the usual mixture of antidiarrhea, multivitamins, immodium, etc. etc.

The hardest things for me and what I could use some help on are the following:
- my eating habits used to be great; fruits, veggies, etc. etc.; now all I eat is highly processed gluten free foods, no dairy, no fruit, no fiber, nuts, chocolate, caffeine; haven't touched a healthy food since March I would give anything to have a salad or a piece of watermelon but I think I would die.
Any suggestions??? Any ideas on good tasty foods that aren't so processed?
- Morning pain: most days of the week I do not want to get out of bed and go to school it hurts so bad. Any suggestions to minimize this morning pain?
- Any suggestions on how to stop the accidents? Doc told me to take immodium which does work but it causes way more pain since then everything just sits inside of me longer.

I would give anything for just one day without pain. I am not responding to the treatments very well and it's starting to become depressing.
Any advice would be greatly appreciated.

 

[glum chump]

Hi Crohnsandcolitis

Welcome to the forum! I, too, have had doctors tell me that I have both. It sounds like, treatment-wise, you're doing everything you can.

Yes, I would do anything for a salad or cheese or any of those foods that our bodies/health won't allow us. I ate a lot of fried rice, made pizzas with soy cheese; quesadillas with soy cheese and guacamole. I use lactose-free milk, and that allows me to have Special K cereal which doesn't seem to bother me. I wasn't gluten free like you (although I couldn't use whole wheat flour, just white, which really bothered me from a health stance). I made my own soup stock and made a lot of soups, stews and casseroles. It was the only way for me to eat my vegggies without causing a lot of pain. The immersion blender was my best friend in the kitchen! I also use a lot of fresh herbs to add flavour to my foods.

Check out the Diet and Fitness section of the forum and you'll find some ideas there and also be able to post your questions on specific foods. In the Cooking subforum, one of the forum members who was a chef has offered to answer our cooking questions!

I do use a hot water bottle to have the pain subside. I also eat a couple of crackers---I think acid builds up in my tummy and I feel more pain the morning, so if I wake up at night, I'd eat a couple of crackers and then again when I woke up.

Have you tried Lomotil at all? Or cholestramine? I'm not sure if they'd be any more helpful than Immodium but may be worth a try. They're both prescription based.

Like you, I didn't respond to any medications and was becoming more and more housebound. I couldn't handle the anxiety of trying to find a bathroom, crapping my pants, etc. Too many strictures and the pain was getting to be too much. I ended up opting for surgery and have a permanent ileostomy. It was truly the best thing ever for me, and I'm grateful for the life it has given me. I'm now able to eat all foods, take my dog for a walk twice daily, do my own grocery shopping....all the little things that used to be too much.

I hope you're able to find something that works for you. Check out the Treatment forum where there's a Remicade subforum. I'm sure you'll find lots of good info there.

Good to have you here---will look forward to reading your posts along the way.

Cheers,

Kismet

 

[ameslouise]

Dear C&C - Welcome to the forum! Sorry to hear you are having such a tough time and not responding to your treatments. I assume you've done the usual course of prednisone before you started on the other treatments?

Your questions about food are tough to answer because this disease is different for each of us, and the foods we can/cannot eat are different for each of us. Many times its trial and error. Have you tried eating canned fruit? Or fruit smoothies? There are many good non-dairy alternatives out there that you can try instead of using milk or yogurt. If you check out the diet section of the forum, you will find some good ideas. Many people have good luck with pureed vegetable soups.

As for the accidents - been there myself! The going theory is that immodium should be kept to a minimum for those with IBD. Have you asked your doc about an anti-spasmodic like Bentyl? Many here have also had good results with amitripyline (sp?), which is an anti-depressant that also has the added bonus of being an anti-spasmodic. I was on it for a bit myself and it was a godsend!

Keep poking around the forum and you will learn lots about different foods and treatments that are available out there for the symptoms you are experiencing. Good luck, hope you find some relief soon.

- Amy

 

[David]

Greetings and welcome!

I can certainly understand your frustration. Let's see if we might be able to help a little

1. I think it'd probably move away from those highly processed foods, especially since it sounds like you're having a lot of issues still. Our diet and fitness forum should provide some ideas. A stickied thread there lists lots of safe foods and continues to get responses from people there about what works for them.

2. Rather than immodium, have you heard of psyllium husks? I know some people here have had great success with them.

Out of curiosity, where is your pain and other than the D, what symptoms do you have? And other than the Remicade and 6mp, what drugs have you been on?

I wish you all the best!

*hugs*

 

[crohnsandcoilitis!]

Thanks so much for your reply...haven't tried any fruit,veggies yet b/c i'm still too afraid of the pain...doing lactaid milk with cereal, etc. Thanks too for the drug info. wrote them down and will take them to my next appt. I know immodium needs to be used in moderation and I have found that while it stops the accidents it also causes more pain because then I'm backed up and everything just sits inside of me until its ready to come out - UGH! Thanks again.

Dear C&C - Welcome to the forum! Sorry to hear you are having such a tough time and not responding to your treatments. I assume you've done the usual course of prednisone before you started on the other treatments?

Your questions about food are tough to answer because this disease is different for each of us, and the foods we can/cannot eat are different for each of us. Many times its trial and error. Have you tried eating canned fruit? Or fruit smoothies? There are many good non-dairy alternatives out there that you can try instead of using milk or yogurt. If you check out the diet section of the forum, you will find some good ideas. Many people have good luck with pureed vegetable soups.

As for the accidents - been there myself! The going theory is that immodium should be kept to a minimum for those with IBD. Have you asked your doc about an anti-spasmodic like Bentyl? Many here have also had good results with amitripyline (sp?), which is an anti-depressant that also has the added bonus of being an anti-spasmodic. I was on it for a bit myself and it was a godsend!

Keep poking around the forum and you will learn lots about different foods and treatments that are available out there for the symptoms you are experiencing. Good luck, hope you find some relief soon.

- Amy

 

[crohnsandcoilitis!]

Hi David.....Thanks for all the info...posted my doc in Illinois, friended cf on fb, and now I have a couple of questions. My mom and I looked Psyllium husks and they look like a fiber thing which I can't imagine many Crohn's people needing? Are you sure they work on D, accidents, etc.??
Since the beginning I've been on sulfasala???(5asa)sp?, prednisone both pills and IV's...10 days in the hosp. in May on IV steroids which is when I went on remicade, omeprazole, ferrix(vitamin supp), now on 1mg/1kg of remicade, 100 mg. 6mp, omeprazole and ferrix. I've been really sick for the last 2 weeks and they are now testing me for an IBS, thyroid and I don't remember what else.
Symptoms are pain b4 the D, and if I'm hungry, 6-9x/day D the worst is the morning 5-8aish....and 2-4x week with accidents; the GI doc said to take immodium to stop accidents but that just makes the pain worse b/c everything sits inside of me.
Definitely hating life right now....
Thanks for your support.

 

[David]

Hi David.....Thanks for all the info...posted my doc in Illinois, friended cf on fb, and now I have a couple of questions. My mom and I looked Psyllium husks and they look like a fiber thing which I can't imagine many Crohn's people needing? Are you sure they work on D, accidents, etc.??

It seems counter intuitive doesn't it? But what the psyllium husks do is ABSORB all that excess water and bile salts and bulks up your stool. Give this thread a read and see what you think.