Crohn's Disease & Ulcerative Colitis Support Group
Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical...
Two weeks ago I went into the ER feeling- wrong. There was huge pressure in my abdomen, pain, I'd had blood in my stool (but it wasn't dark ) and what I thought was just severe constipation/ a bit of a flare of proctitus (sp).
It turns out, it wasn't.
As I was informed during my two week luxury spa stay, I had-have- severe Crohn's Disease, and had developed 2 obstructions in my digestive tract, and the rest was blocked off due to at LEAST severe inflammation. My blood count was 6 something- I had to have a transfusion.
Now I'm out on a long taper of steroids with plans to see a doctor for followup. They released me without any other instructions- no guidance as to how to go about eating, nothing except 'take your medicine' (meds being iron supplements, colace, a protective thing for my stomach, and, of course, prednisone).
I'm so overwhelmed- and not just because they're talking about the possibility of the obstructions being due to scar tissue which would require surgery, depending on how long I've been this messed up.
I (like everyone else) have a life. It's been on hold for 2 weeks. I have classes, laundry, rent to pay, commissions, doctors, apartment searches, chores, other obligations.
And now, I don't know what on earth to eat.
When I was in hospital, the clues were pretty obvious- I'd eat too much of something or the other and WOW my body was mad. But then I could sleep it off and pray to the tummy Gods for forgiveness. I don't have that luxury now.
I'm flying blind. I don't trust the internet as the be all end all, and I can't wait a month for a doctor to give me guidelines.
Guys, what do you eat? What do you stay away from? I mean, common sense- cut out the fried things you know are terrible. Limit fats. Limit hardcore fiber. Moderation. No alcohol. No HUGE meals.
But- what else?
I can't eat tree nuts, pineapple or coconut. Or oats. My protein source is honestly limited to meat and beans (or whatever I can find in veggies).
Any input is appreciated. Please help me. Ball is already rolling and I can't get squashed. I can't afford to unknowingly make myself worse.
It turns out, it wasn't.
As I was informed during my two week luxury spa stay, I had-have- severe Crohn's Disease, and had developed 2 obstructions in my digestive tract, and the rest was blocked off due to at LEAST severe inflammation. My blood count was 6 something- I had to have a transfusion.
Now I'm out on a long taper of steroids with plans to see a doctor for followup. They released me without any other instructions- no guidance as to how to go about eating, nothing except 'take your medicine' (meds being iron supplements, colace, a protective thing for my stomach, and, of course, prednisone).
I'm so overwhelmed- and not just because they're talking about the possibility of the obstructions being due to scar tissue which would require surgery, depending on how long I've been this messed up.
I (like everyone else) have a life. It's been on hold for 2 weeks. I have classes, laundry, rent to pay, commissions, doctors, apartment searches, chores, other obligations.
And now, I don't know what on earth to eat.
When I was in hospital, the clues were pretty obvious- I'd eat too much of something or the other and WOW my body was mad. But then I could sleep it off and pray to the tummy Gods for forgiveness. I don't have that luxury now.
I'm flying blind. I don't trust the internet as the be all end all, and I can't wait a month for a doctor to give me guidelines.
Guys, what do you eat? What do you stay away from? I mean, common sense- cut out the fried things you know are terrible. Limit fats. Limit hardcore fiber. Moderation. No alcohol. No HUGE meals.
But- what else?
I can't eat tree nuts, pineapple or coconut. Or oats. My protein source is honestly limited to meat and beans (or whatever I can find in veggies).
Any input is appreciated. Please help me. Ball is already rolling and I can't get squashed. I can't afford to unknowingly make myself worse.
When I am feeling sick I have to stay away from things like nuts, raw veggies, fruits with seeds (or rough peels), among other things like fried foods and red meat. I find that the nuts and seeds cause more pain and more bleeding. I can only assume it's because they are small and probably getting stuck in the ulcers on the way down. I also tend to stay away from any dairy when I'm sick as I find that I am lactose intolerant while in the midst of a flare.
I hope that is somewhat helpful! Feel better soon! =)
Rachel
Eat small amounts throughout the day. Like you say, eat too much at one time and it is not nice.
Get ensure. This is a good supplemental drink to get protein and minerals into your body.
In general avoid alcohol, dairy, and caffeine. Alcohol and dairy can be hard on the GI in general and caffeine can stimulate the GI. Eventually you might be able to tolerate these things, but for now, avoid them. Also avoid high fiber foods. Avoid raw vegies and anything that can give you gas.
I would suggest staying away from your beans right now.
The thing you have to do is start the BRAT diet and a food journal to journal what foods help you and what foods hurt you. What we can eat is very personal and a big experiment in the beginning.
Red meats are harder to digest. Chicken and fish are easier to digest. Some people do well with eggs, but some people claim that eggs hurt them. You have to try it on your own.
Potatoes are a nightshade plant. I have learned that potatoes give me trouble as many people have trouble with the nightshade foods in general. Thus I do rice where I would have once done potatoes or mashed potatoes.
Eat sort of like you have the flu right now. Be very nice to your tummy.
Too much sugar can cause problems. I have found that High Fructose Corn Syrup is very bad for me. I avoid foods and drinks with hfcs and drink only sodas with real sugar. Also, artificial sweeteners can cause a lot of trouble.
There is a lot to learn at first along with learning that you now have a chronic illness. It is a lot to take in and very over whelming. We understand and this site has been a lot of help for me when I was first diagnosed with Ulcerative Colitis 4 years ago. I became ill very suddenly the month I turned 30. Working, purchasing a house, living a life, etc. Like you say.
I would suggest at this point, since you have spent 2 weeks in the hospital, that you look into temporary State Disability. This can help take some of the financial pressure off of you for the immediate time being while you recover and learn how to deal with this new illness. If you are going to school I would talk to your advisor about taking a medical leave of absence. This also applies to your work as you would not be working while on temporary Disability. DO NOT feel like you should not take this help. That is what this is here for and why you and other people work. With luck you will recover and return to work, thus repaying what you used of the State Disability. You MUST take care of yourself with this chronic illness.
I worked for a year while critically ill. I kept hoping, believing, that after another month, another medicine, that I would be 'better'. Sadly I did not reach remission and am now on full Disability. It was not what I wanted. I wonder if I had taken time off in the beginning and really taken time to let my body rest if I might have recovered better in the beginning. Please take the time you need in the beginning stage to let your body try to heal. To give yourself time to learn about this new aspect of your life. Read past posts on this site, it is rather informative and some are funny. Ask lots of questions. Vent when it is too much.
Don't be surprised if you have bathroom issues and poop yourself at some point. There are a couple long threads on here about that! They are pretty funny for those of us that have been ill for a while and it is nice to know that you are not the only one to have such a problem when it happens. I made it a long time before it happened to me...but with these illnesses it seems to be something that happens at some point. Just have an extra pair of clothes and some cleaning supplies. A good sense of humor helps too. ;)
As for laundry and chores...take each day as it comes. Don't beat yourself up over the little things. Try to do one little thing a day. Once upon a time I could clean my house in half a day. Now I don't have that energy and I only do a few things a day. I skip days. You do what you can. You do what has to be done and leave what doesn't absolutely have to be done. You sleep because that is what you really need. You get help to pay your rent and bills. You cut bills that you don't have to have. Do you really have to have cable TV? That sort of thing. Dr bills take payments and if you call can sometimes be decreased after insurance, all you can do is call and work with them.
Try to avoid stress. Stress makes it worse. Do deep breathing or whatever helps you calm down and focus. Call friends and family for help. You need a support system. Be strong enough to ask for help. :)
Sorry if any of this was preachy or anything. I remember how frantic I was when I was first sick. I hope I have answered some questions. You are going to have a lot of questions. I hope you feel better very soon and that your Dr appt goes well. The main thing is to treat yourself well right now.
Good luck,
Rachel A.