Scared to death of food...and im so miserable

Hi Guys,

I am at my wits end and need mostly that people can relate to me because I feel like such an alian these days and its because I just cant tolerate ANY food!

I was diagnosed with CD in 2000 and after a shocking 2 years was in remission for 5 since I had my little boy 2 years ago it reared its ugly head again. Over a year ago I went to a GI and told him I wasn't dealing with food well and 1 out of 3 meals would either not stay down and everything thing that did go down would cause me grief on the way down and out and he was hopeless and told me I had mild ulceration in the ilium and my stomach was fine...so I ditched him after the last straw being he raised his eyebrows at me and said "it all seems fine to me" after I told him my marriage was suffering and I am a full time mum and run a full time business and cant go on pushing myself without more medical help and pretty much wiped his hands of me.

Since then I have found a new GI and he has put me in Imuran 125mg a day and every time I tell him my food tolerance is getting worse he just refers back to the year old colonoscopy and gateroscopy 'that the other doctor did' and raised his eyebrows and said "well it all looks fine to me". When I told him 80% of the food I eat wont stay down or causes massive uncomfort going through. He eventually gave me some motillium to help me digest the food better but they didn't work and I spend my day procrastinating to eat and if I do its Water, Tea, Lactose free milk, red bull or coke. This seems like a weird list but trust me its the only stuff that doesn't cause me grief.

I am so sick of food and having a nurse for a mum & sister and my husband and I being in the fitness industry you can imagine they give me hell for my diet but all it does is make me feel more guilty for living this way. I'm so sad and angry that after 17 months I still don't have the answers I need. I hate that I can still clearly remember the days when I was completely normal and ate what ever I wanted even after I was diagnosed. I feel that I'm a ticking time bomb, not just from my health but mentally because I miss eating without repercussions so much i dwell EVERY meal time about it and every time it comes up and out I blame myself.

I cant thank God enough that I have you all to listen to and have as support, it means so much to me and every time I read someone's post who has had a similar problem or experience to me it cheers me up because I don't feel so alone and crazyhttps://www.healingwell.com/community/emoticons/turn.gif

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To end this blabber in a sentence I feel like I have an unwanted eating disorder! Thanks for the opportunity to vent guys...please tell me you have experienced something similar??????

*I moved your link into your post from the subject line*

Post Edited By Moderator (Nanners) : 7/10/2009 9:30:41 AM (GMT-6)

Like Nanners, I think you need to keep looking for the right doc, somebody who will treat you with respect. A competent GI will understand that the scope doesn't tell the whole story. Like my daughter's GI said, "We treat the patient (partly by asking the patient how she feels), we don't treat this (refering to the printed scope results).  

The problem with a scope is that it is only a moment in time. The next moment, hour, day, week, month, or year, your inflammation can suddenly worsen and cause a stricture. However, if you have been on Imuran at least a few months, and because it has been a year since you last had a scope, then now might be a good time to have another one. It can do double duty, not only showing changes (if any) since last year, but also showing whether the Imuran is effective.  

Thanks so much for the reply I had a moment of courage and rand my GI to make sure he orders more testing but as usual he was away on holidays for the week and will be back Monday.

Has anyone done the test where you swallow the pill camera? and how effective is it at seeing the trouble? I am surprised I haven't had that done considering the colonoscopy doesn't go down very far into the small intestines (where we have all the trouble ha ha)

I am considering changing doctors again and going to see someone who treats my mother in law. It is a 2 hour drive but I think may be well worth it because she loves him.

Thanks again guys (your lifesavers)

Thanks for the advise janicea I do try to make more nutritional liquids but even thick drinks bother me and I have to drink them slowly and sip sip sip. I cant eat yogurt but do try on a good day to chuck a banana in although when I think i will be okay most times i'm not and just regret it so I end up sticking to the usual unhealthy choices but at least i'm not couch ridden for the day.

I find the best days are when i've had NOTHING all day because i don't suffer pains in my intestines unless i'm eating. I told the doctor I get stomach pain after food and he said "its just your stomach stretching" and I said well it happens even when im empty and he said "I cant tell you what that is" and i had suggested maybe I have the disease higher up or a stomach ulcer and he said "unlikely" Friends joke and say im a living Vampire ha ha minus the blood.

I will speak to him monday and you guys have given me more ideas to suggest and some courage to be more aggressive in finding answers so hopefully he will suggest more testing. Sometimes I feel like doctors don't want to hassle us with the tests when they don't realise we would do anything to find the answers!

Hey, if you are having problems with even thick drinks (I've been there, but not for long) maybe fasting/light drinks IS the best way to go for now. But seriously if your stricture is that bad you need to find a doc that will help you ASAP. If it makes you feel ANY better, mine would improve, but you are really suffering!!!

I'd suggest telling the doc you get nauseous at X amount of time, after eating anything thicker than Y. You can fill in the letters. Concentrate on the symptoms of obstruction in the intestines. IE: I get nauseous and sick feeling, even day, 5 hours after I eat or drink anything thicker than diluted cream soup. Exactly.

If your doc does not catch on to the problem from a description like that, you need to at least get to your regular family doc and get support and find an answer. I'm guessing what you have wrong will show up on a CT with contrast. Maybe not the exact width of the stricture, but the intestinal thickening. that' a good starting point to move forward.

when I could ont eat anything thick, I used fruit juice to thin, (smoothie-wise) and also SCD legal yogurt has no (almost zero) lactose. :) hang in there and be good to yourself.