New to chrons I dont experience D what can I eat

[phoebestar]

Hi I am new to CD and I am getting little help from my consultant, who is only interested in me if I have a flare up I have had 2 since Nov 2011. I am in remission at the moment (so my drs tells me although I still have pain in my right groin and suffer badly from joint pain and restless nights)
I was admitted to hospital with cramps and pain in my right lower groin. They diagnosed appendicitis and had it removed then they found out it was not my appendix but CD. They first found narrowing of the bowel but some how that's cleared.

I have trawled the net looking for information regarding food . All discussions seem to be advising suffers not to eat things that cause D but what can I eat. I dont suffer from the dreaded D , thank goodness . Before I was diagnosed I had a very healthy diet I ate plenty of fresh fruit and veg but have been avoiding these as suggested.
PLEASE HELP i'm longing for my fruit and veg.


taking

mesalazine

budesonide

codeine

female aged a young 59 with lots of living to do

 

[NancyHany]

Welcome to the forum Well I believe that when it comes to food, each crohn's patient is different. Personally I keep track of what I eat and I notice if it made me feel worse later or not. Only things I did quit are coffee, black tea, soda, orange, lemon, chocolate, lettuce, hot sauce, beer,butter, dairy products,sugar, nuts and I only have a drink a month if that. I tend to avoid high fiber food in my bad days and I go on a liquid diet but then again I've been in a flare up for the past couple of years with constant D 12+ a day.

So if you are in remission with no D, try to introduce a piece of fruit or veggie a day and monitor if it worsen your symptoms or not. Regarding your symptoms I'd ask the doctor for a medicine for the cramps. Did you mention your joints pain to your doctor?

 

[phoebestar]

Thanks NancyHany I will try that. My problem is I've never had D and have been in remission since April because this is all new to me I dont know the signs that I am going to be ill. I dont start to feel ill until I am really ill with the cramps and stomach ache , its happened twice and I have been admitted to hospital on both occasions. I am still on steroids and have been since Nov 2011 which I am not happy about. When I was ill the drs were going to try and put me on biological drugs but my liver function is not stable. The steroids and Mesren seem to have done the trick thanks goodness. I have searched through every forum to see if any more suffers of Chrons dont have D but I come across none so I dont know what too look for or expect. Am I a one off ? I feel so lonely ,the drs treat me as a patience with D and tells me to go one a low residue diet and avoid fibre and seeds. if there is only ONE out there in my position if so I would like to here from them.

NancyHany I will mention the joint pains to my dr again last time he gave me Tramadol but I cant function on that its too strong.
I hope you manage remission soon .
Kind regards for your reply

 

[Beebop]

I am a lot like you Phobestar... I dont really get the D but I do get lots of pain and usually its too late at that point. The advice I got from my GI was that I could have a relatively normal diet when not flared however when flared drop down to low fibre... This meant that some veges were ok however veges like corn, broccoli and cabbage were not. Also fruits such as lemon, orange and mandarins are also a no go with a flare or suspected flare. I also feel really lost with my diet but to be honest since the steroids sorted the flare and I have been on pentasa things have just trucked along. I havent given up much but I am more wary. I agree to start introducing things once you are no longer flared :0). If you have any more questions I would be happy to answer but be aware I am just going from my own personal case and I am aware that everyone is different.

 

[Trysha]

Hi Phoebestar,
I have crohn's left colon and the symptoms initially were pain, loose stools lots of blood, and I would moderate my diet to include soluble fibre.
Now, I get loads of pain, and frequent constipation.No more blood lately which I think is due to the cortifoam enemas prescribed.
I eat pretty much what I feel like eating unless the pain becomes intolerable and then switch to juicing and liquid diet.This I find really helpful .
Currently my GI would like me to accept Remicade treatment---I am very unsure about accepting this form of treatment.As the years are going by I notice the symptoms are getting more frequent and harder to tolerate. I have a very high pain threshold and hold out till I can't anymore, then I call the gI.
I am in my senior years and have been told that the type of crohns in this age group is different to younger people and easier to treat.At times you could fool me!!
There are a number of people on this forum who experience constipation and not the usual diarrhoea associated with crohns.
I think every crohn's patient is different.
Feel better soon
Hugs
Trysha

 

[phoebestar]

Thanks every one for your reply, I will try some of your suggestions.

I still have not managed to find anyone who has never had the dreaded D with chrons. I am due to see my chrons dr next week lets hope he has some answers.

I am well at the moment, thank goodness.
I wish you all good heath for the future xxx

 

[Kip1]

Hi
I didnt have D either. Just very occaisionally loose but never very often (no more so than any normal person i would say) but i did get pain & EIM.

 

[phoebestar]

Hi Kip1
Thanks for your post, Can I ask you, do you eat normal? or do you avoid things?. Normally chrons peeps avoid certain foods because they gave them D but in our case it doesnt.
ps what medication are you one.? there doesn't seem many people on Mesren as I am.
Hope your keeping well x

 

[ZM1019]

Phoebe,

I am also new, a young 52 and never had the D (in fact my problem is the exact opposite but with inflammation and pain on the right side). I posted further down in the Your Story thread because I also feel completely alone so i am so happy to see your post and Beebop, Trysha and Kip's replies.

As for food, I knew before I even found out what was going on that any form of starch caused my issues. I've never liked starch (it tastes like paste to me) and it always made me gain weight abnormally quickly even on a low calorie diet. So basically I suspect that my body doesn't release Amylase right (they tested me for Amylase and I have it which means it's the mechanism of releasing it that's messed up) because every food I have an issue with needs Amylase to break the starch into sugar. I avoid it but it's a nightmare because our society puts starch in everything, even vitamins and medicines (and yogurt, etc.). But, that aside, when I have the time to make everything myself and avoid it, I have no pain at all. Start tracking everything you eat and selectively leave things out for a period to see what is going on. My body could care less about fruits and non-starchy veggies, milk products and many other normal triggers. I've told both GIs I've had about it and they told me to just avoid it no matter what. Your own body is your best guide. Everyone's system is going to have quirks so you have to get to know your own system.

Did you suddenly have symptoms? I did. I didn't have any of this right side pain until 2010 and then within two months it had me in the hospital (in Costa Rica where my Spanish was just not up to snuff to describe what the heck was going on!).

I'm just wondering if there is a subset of us who have sudden onset later in life? Every doctor I've had sees that I'm allergic to Naproxen and asks me if that's what set this off (it is, I'm positive about that because it was instantaneous). They keep telling me it's a known trigger for digestive problems like IBS, IBD, etc. and I keep reading it, but I hadn't run into anyone with an onset in later life until now. (Not that I don't feel for everyone else on here because I have a friend with CD (with the dreaded D) and I know the horrible time she had with it!)

Anyway, welcome!

 

[phoebestar]

Hi ZM1019
I was sat at my desk, one afternoon when bang, really bad stomach ache and cramps.
I put up with it for days and decided to go to the drs. She sent me to hospital with suspected appendicitis. 2 days later they removed my appendix but I didn't pick up so they did more tests and concluded I had croons. The consultant put me on Mesren , then said he would make an appointment with the chrons doctor and sent me home. 3 weeks later I was back in hospital with same problem now I was in the chrons dept.Had every test possible. They put me on steroids and a low residue diet. I was discharged , to wait the outcome. I have pain in right groin. joint pain and fatigue . I see both surgeons and chrons specialists early July Hope they take me off the steroids and give me some answers
.
I feel sorry for the younger people as they seem to have the Ds all the time.

One other thing I had suspected celiacs 3 years ago as I went really thin and wheat products made me feel ill but all tests proved negative I was never a lover of white bread, pasta, potatoes but now thats what I have been told to eat.
x
Hope your keeping well.

 

[ZM1019]

Phoebe,

My GI (who is part of a Digestive Diseases Speciality Group) just diagnosed CD last week. This comong Thursday I have more blood tests that have to be done at the hospital (not sure what those are) that my GI said would tell her which type of CD I have then she can decide on a treatment. I know that she did at least four biopsies, looked for Celiac's as a possible secondary problem and removed a polyp. On a good note she told me that the erosion in my esophagus and my two ulcers in my stomach are gone. She was really happy about that. She also seemed very positive she could treat me. I will know more about what that means on 7/6 when I see her again.

I do have to say one good thing about the doctors in Costa Rica - even the GP I saw palpitated my abdomen and said this is not your ovary, this is a problem with your colon and it's not working right. He set me up with a GI immediately and booked me for an ultrasound, endoscopy and colonoscopy. (And all of that was $300! So much less than the US.) If starch hadn't been my trigger, I would have been happy to stay there because they seemed really engaged and talked to me about everything, showed me my test results and saw me whenever I called. It was my food issue that was a nightmare there because they had limited options and I really didn't have the mastery of the Spanish language to figure out everything that could contain starch.

As far as your diet, I would be very vocal if you think your triggers are different. I think they have a diet based on the norm, but everyone is different. If you aren't persistent they can end up causing you even more damage and you don't want that.

I do have to say this as a result of your post and others I've seen - I've had on and off very pronounced pain in my joints (especially in the morning) and I never thought it was related to this. I've also had disrupted sleep, fatigue and hot flashes. I thought my Estrogen had dropped, but maybe it's CD?

I'm doing pretty good right now. I was on a liquid diet for my tests last week and I haven't really been eating a lot of solid food yet. My insides were very tender last week and I just didn't feel like eating yet. Liquids were easier. They seem to make it better for me because they move through me without problems.

 

[Kip1]

Hi
I was put on low res diet but couldn't hack it at all. It seems so unhealthy to me the constant watch my weight eat healthy diet lady although I do appreciate it works for some when they need it. My mum has had Crohns from being 17 & has always had D.
I have to be careful with fibre as I become constipated with it which is the opposite of what it should do I know but i do have wholemeal bread although no more than 2 small slices per day.
I saw the surgeon today re the bowel resection I am due to have. It is to remove my TI, appendix & Caecum I think he said but it seems its all attached anyway.
I am currently not on any meds but GI wants me to start on Azathyoprin or 6mp after op.
I had pain, bleeding & other EIM which i didn't associate to Crohns as i hadn't any D but I had a Colonoscopy in November last year due to my dad having colon cancer & they found Crohns then.

 

[Catherine]

Just wanted to let know that my 16 has never had D as symptom of her crohn. She response to treatment has been judged on pain only.

 

[Beebop]

And I am 24!!!!