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

Do you prefer to not eat reguarly to spare the pain?
6
yes - 66.7%
3
no - 33.3%

 
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cayer
Regular Member


Date Joined Jan 2009
Total Posts : 76
   Posted 7/10/2009 7:51 AM (GMT -7)   
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 crazyhttp://www.healingwell.com/community/emoticons/turn.gif
http://www.healingwell.com/community/posticons/icon8.g

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)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/10/2009 8:02 AM (GMT -7)   
When I was first diagnosed I was exactly like you, I couldn't hold anything down. I was put on Prednisone back then and Asacol like med, and also a special diet (which I beleive was a low res diet) and that helped me to get better. Sounds like you are suffering terribly and your doctors are not helping you. Sounds like you may have a stricture or even something like gastropariesis. I would suggest ANOTHER opinion and maybe a repeat scope. Something is wrong to cause you not to eat, and these docs are wrong for not listening to you. Sending healing prayers and thoughts your way.

Hugs
Gail *Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 7/10/2009 8:31 AM (GMT -7)   

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.  


Lili_Enigma
Regular Member


Date Joined Jul 2009
Total Posts : 24
   Posted 7/10/2009 4:43 PM (GMT -7)   
I'm EXACTLY like you right now... can't eat a darn thing except chicken, minimal rice, Ensure and a few other little things here and there. I've lost 40 lbs and I'm still losing. I've been as low as 85lbs (I'm 5'7) and spent most of my 20's around 100lbs for exactly the reason you are saying... I stopped eating because I couldn't take being sick, and doctors weren't supporting me to find out why. I didn't know I had Crohn's. Now my GI is a Crohn's specialist and researcher so he knows what I am going through and is continuing to look at the cause of my not being able to eat. He's great in that he takes my experience into account and orders more tests to get to the bottom of it. He doesn't talk about stuff until he has results, which is annoying, but he takes my symptoms and experience seriously. I know we'll figure it out, which makes it bearable at least, as i hope to have an end in sight soon!
I do know that I have a partial obstruction and so food is getting stuck in my small intestine... it causes a lot of pain and nauseau... and diarrhea... when it really blocks it will even cause fever and vomitting. Most of the time I just don't eat, it feels better. I make sure to drink Boost or Ensure to get my nutrients in as much as possible. I've been down the road of kidney and heart damage.

I know what you are going through, how frustrating it is... I would see another doctor that will help you, you need to find out why you still can't eat.

I hope you feel better soon...

cayer
Regular Member


Date Joined Jan 2009
Total Posts : 76
   Posted 7/10/2009 5:02 PM (GMT -7)   
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)
Tina 26yrs old Diagnosed in 2000 with Crohn's surgery for perianal abscess and fistulas
currently on Imuran 125mg Motillium for digestion used in the past Remcide, salofalc, pred.
Worst pain equal to child labor was after eating home made Granola...i can still hear the screams ha ha.


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 7/10/2009 5:17 PM (GMT -7)   
sounds like you've got strictures in the large intestine has anyone done a cat scan? If you do have strictures you got to be really careful, the camera can get stuck.... it's the part they can't see in a colon or endoscopy.

Have you tried smoothies with protien powder and maybe a little yogurt and fruit thrown in? or something like that? I lived that way for 3 years, it was fine.
Hell, I pretty much still do that about 30 percent of the time.
strictures, crohn's, adhesions, endo. Pyoderma Gangrenosum.
LDN 4mg ~ Boswellia Serrata ~ Olive Leaf extract ~ SCD yogurt. Using silver sulfadiazine on Pyoderma . B-12 shots. Juicing veggies!


cayer
Regular Member


Date Joined Jan 2009
Total Posts : 76
   Posted 7/10/2009 10:21 PM (GMT -7)   
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!
Tina 26yrs old Diagnosed in 2000 with Crohn's surgery for perianal abscess and fistulas
currently on Imuran 125mg Motillium for digestion used in the past Remcide, salofalc, pred.
Worst pain equal to child labor was after eating home made Granola...i can still hear the screams ha ha.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/11/2009 7:12 AM (GMT -7)   
Cayer I have not had the pillcam my self but have read of many others who have. Some who had difficulty getting diagnosed with the usual scopes, SBFT, CT scan tests, have finally gotten diagnosed with this test. But if you have a stricture/blockage going on, you may have to do the test pill first to make sure it doesn't get stuck. Good luck sweetie and keep us posted. Gentle hugs and prayers going out to you.

Hugs
Gail *Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 7/11/2009 9:08 AM (GMT -7)   
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.
strictures, crohn's, adhesions, endo. Pyoderma Gangrenosum.
LDN 4mg ~ Boswellia Serrata ~ Olive Leaf extract ~ SCD yogurt. Using silver sulfadiazine on Pyoderma . B-12 shots. Juicing veggies!


moedon1
Regular Member


Date Joined Jun 2005
Total Posts : 139
   Posted 7/11/2009 9:30 AM (GMT -7)   
I've done the pill cam 3x. Each time it has been very easy to deal with even when I had a stricture.(that is me though) The pill cam is great for getting a quick look at those area in the small bowel that a scope can't reach.(no matter how hard the GI tries and how much I yelp) The longest it took for the camera to come out was 5 hrs. You have to follow the guidelines carefully. Mt eating is always a huge problem. I have been on ad off pred. for approx. 15 yrs. My weight while on it is 50 lbs. more then when off. but I 'm willing to overlook that to feel less pain. It seems as though everything I eat causes problems. I am convinced that once my stomach recognizes what's coming it shifts into the "pain train" and the food is eliminated shortly thereafter. I've tried to fake it out by eating something bland with whatever it is but it never works. I've lived on rice and green beans for months at a time. I've done gluten free, fat free, no red meat etc. for years. It is very discouraging and unfortunately family and friends really don't get it, as much as they try. I do not dine out(rarely but I have to know exactly where and what is offered on the menu and I start planning the day before by eating soup or tast(very little). I also do this if I have to go out at all which is hardly ever. I do have some things that I can eat that so far(knock on wood!) I have been able to tolerate. Very lean ground beef or ground turkey, white mild fish, no fat products, mashed or even baked potatoes, I use Smart Balance Spread for everything, yogurt every other day. Chicken breast cut before cooking. I can't tolerate whole chicken breast for some reason but small strips or chunks work well. I try not to repeat the same meal in the same week. Canned green beans with mashed and ground beef is a staple for me. Noe of it sounds appetizing but it beats not eating. I try to get the protien from the ground beef and chicken. Generally I will eat very little, even on a good day so that I can have a decent dinner. For some reason eating a decent dinner makes me fell better even if it comes back out. At least I know that I don't have t do anything after.
This can be very depressing. My heart breaks for you. Hopefully you can experiment a little with safe foods but a little bit at a time.
Hope things get better!
Donna
 Formal diagnosis 3/2006, IBS 1992, Degenerative Arthritis Facet block and RFA, Seizure Disorder, Severe Carpal Tunnel both hands, SVT arrythmia, 2004 cardiac Ablation
Cushings Syndrome(thanks Prednisone), Asthma, Multiple Laps for ovarian adhesion to bowel, C/5 & 6 disc herniation - plate with screws, resistant to anethesia/most pain meds.  Chronic fungal infections.
Multitude of Meds. Have tried most Crohn's meds.  Gall bladder removal and Intestinal Lap. June 08.- Intestinal blockage July 08 moved on from on Humira..now on Cimzia. .Off the Cimzia 7/8/09.  Back on Humira.  Systemic fungal infection.  Waiting on Liver Biopsy & Hepatitis results.

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