• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

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Ladyslipper

Ladyslipper

Hi there - I am new here but have been following your posts since I was diagnosed with Crohns in March. I am 43 years old and have had D for many years which I had been told was related to my gallbladder being removed about 14 years ago. In May of this year I had developed severe abdominal pain, N, V and D which occurred through the night and I had chalked up to food poisoning, but this had occurred about 4 x since that time. I had a colonoscopy in July and that was clear. Last month I developed the same nighttime pain with N,V and D but this time didn't go away (more severe that I ever knew would be possible) - I went on to have a CT scan and then colonoscopy with biopsies and a diagnosis of Crohn's was made.Involving the distal small bowel and terminal ileum. It was a GI surgeon who did the colonoscopy and he started me on Prednisone 30mg (made me feel absolutley crazy, no sleep, labile emotions, etc.)and had that for 10 days and then he decreased me to 15mg. In 2 more weeks I decrease to 10mg daily. The D has stopped and having formed BMs about every 2-3 days and I do feel much better than I did, but I really am finding eating a struggle - I am down about 20 - 25 lbs and just have absolutely no appetite. Everywhere I read it says Prednisone will give you a huge appetite and weight gain, but not for me. I am eating an egg each day and tolerating some carrots and rice. Tried small bits of chicken and that seemed ok. Also tried lactose free yogurt and that seemed ok. Not sure if I should be pushing more food, but I am sooo terrified to get sick again. My GP is really encouraging me to eat more, but I know it is my fear that it may irritate my bowel that is holding me back. I have an appt to see a dietician next week. I go see a GI Dr April 24th. I am also taking Vit C,D and Calcium but feel like I am kind of wasting away - I drink lots of water so am not dehyrated at all. The past few days I have been going out for short walks in the am and that has made me feel a bit more normal. I usually lay down each afternoon for about an hour and that seems to get me through the day. Have been off work since the middle of March when this all began, but my work is very supportive of me.
Another positive of the steroid is that I can now sit comfortably - previously it was questioned if I had a pilonidal sinus as I always had such a painful area just below my tailbone - but now that I am reading about crohns I would say it must have been a fistula and this is the first time in about 2 years I can sit without any pain. This area would get sore off and on, but in the last 3-6 months was always very sore. Now painfree there. Also had seen an eye dr. in past year for painful eyes and had to stop running in Jan of this year due to painful knees. Seems to fit the crohns picture from what I am reading.

I know I am doing much better than I was about 3 weeks ago but I do feel like I have been through the wringer and there is not a lot left in me. I so appreciated being able to read this forum. I know that I feel a bit paranoid that everytime I get some discomfort in my side I worry this is all going to hit me again and not sure what I should do about food. I feel like my body is kind of wasting away and I probably can eat more but not sure if I should. Thanks for listening and any input you have or advice about food would be very appreciated.
 
Ali29

Ali29

Location
Texas
Welcome Ladyslipper,

This has been a huge journey and the Forum has really been informative. I too drink 50-60 ounces of water every single day - I think it has been a life saver as I haven't become dehydrated.

:ghug:
 
S

Skycruiser

Ladyslipper said:
Hi there - I am new here but have been following your posts since I was diagnosed with Crohns in March. I am 43 years old and have had D for many years which I had been told was related to my gallbladder being removed about 14 years ago. In May of this year I had developed severe abdominal pain, N, V and D which occurred through the night and I had chalked up to food poisoning, but this had occurred about 4 x since that time. I had a colonoscopy in July and that was clear. Last month I developed the same nighttime pain with N,V and D but this time didn't go away (more severe that I ever knew would be possible) - I went on to have a CT scan and then colonoscopy with biopsies and a diagnosis of Crohn's was made.Involving the distal small bowel and terminal ileum. It was a GI surgeon who did the colonoscopy and he started me on Prednisone 30mg (made me feel absolutley crazy, no sleep, labile emotions, etc.)and had that for 10 days and then he decreased me to 15mg. In 2 more weeks I decrease to 10mg daily. The D has stopped and having formed BMs about every 2-3 days and I do feel much better than I did, but I really am finding eating a struggle - I am down about 20 - 25 lbs and just have absolutely no appetite. Everywhere I read it says Prednisone will give you a huge appetite and weight gain, but not for me. I am eating an egg each day and tolerating some carrots and rice. Tried small bits of chicken and that seemed ok. Also tried lactose free yogurt and that seemed ok. Not sure if I should be pushing more food, but I am sooo terrified to get sick again. My GP is really encouraging me to eat more, but I know it is my fear that it may irritate my bowel that is holding me back. I have an appt to see a dietician next week. I go see a GI Dr April 24th. I am also taking Vit C,D and Calcium but feel like I am kind of wasting away - I drink lots of water so am not dehyrated at all. The past few days I have been going out for short walks in the am and that has made me feel a bit more normal. I usually lay down each afternoon for about an hour and that seems to get me through the day. Have been off work since the middle of March when this all began, but my work is very supportive of me.
Another positive of the steroid is that I can now sit comfortably - previously it was questioned if I had a pilonidal sinus as I always had such a painful area just below my tailbone - but now that I am reading about crohns I would say it must have been a fistula and this is the first time in about 2 years I can sit without any pain. This area would get sore off and on, but in the last 3-6 months was always very sore. Now painfree there. Also had seen an eye dr. in past year for painful eyes and had to stop running in Jan of this year due to painful knees. Seems to fit the crohns picture from what I am reading.

I know I am doing much better than I was about 3 weeks ago but I do feel like I have been through the wringer and there is not a lot left in me. I so appreciated being able to read this forum. I know that I feel a bit paranoid that everytime I get some discomfort in my side I worry this is all going to hit me again and not sure what I should do about food. I feel like my body is kind of wasting away and I probably can eat more but not sure if I should. Thanks for listening and any input you have or advice about food would be very appreciated.
Click to expand...

Hello Ladyslipper,

I understand your paranoia with eating food with respect to ongoing symptoms and the potential for further symptoms. There are a litany of literature and anecdotal information on foods to avoid and foods to eat in the control and management of Crohn's disease. What I've discovered for myself is that food is essentially tantamount to game pieces in the game of living with Crohn's disease. I've long abandoned strict adherence to any particular dietary guideline and instead allow myself the opportunity to try and avoid foods according to present Crohn's flare-ups/episodes.

This trial and error approach is the result of discovering that a particular diet or food often have outcomes based on the present flare-up. That is, a food item that did not cause distress during a previous episode can cause problems during another episode. As much as it may hurt, my advice is to eat and drink as you can, avoiding food that is most aggravating, without allowing paranoia to paralyze you from not eating completely. Not eating may seem to abate symptoms, but later on will incite other problems (as you are likely aware).

All the very best to you and know you are not alone in your fears.


- Brian
 
dave13

dave13

Forum Monitor
Location
Maine
Hi Ladyslipper,welcome to the forum.I was diagnosed in November after a resection in my jejunum.I experienced severe abdominal pain at night,I didn't know a person could hurt so much!I would vomit and have bad D like you describe.I did not know it was CD at the time and thought I was suffering from bouts of food poisoning as well.Long story short...I was rushed into emergency surgery for a blockage.

My point is...I was very apprehensive about eating afterward.I looked at food like it was something dangerous to me.I did not want to get sick again.I lost over 30 pounds and was very thin.I kept losing weight.

I started with simple,easy foods.Yogurt,toast,oatmeal,broth,juices,poached eggs,mashed potatoes(potatoes don't bother me),etc.We are all different when it comes to food...but we do need to eat.Take it slow...and you will find you can eat without getting sick.Small amounts more frequently is a good way to go,in my opinion.

Check out the exercise/nutrition support group. :ghug:
 
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