Please answer these Crohns questions for me.

[Turftech]

I'm so confused. I can't seem to get straight answers out of my GI and I haven't been clear enough on here.. So I'm posting a little questionnaire to help me out.

If you don't mind..

1. How long have you had Crohns?

2. Do you have a typical remission and flare cycle? If so, what is it?

3. What are your symptoms in a flare?

4. What are your symptoms in remission?

5. What drugs do you take?

6. Do you eat differently when in remission? How so?

Thanks

 

[DJW]

Hi.

1. Since the late 1970s but started in the mid 1970s with symptoms

2. My first 12 years or so were awful. Then 20 years remission with no meds (I don't recommend that...I was just fed up with doctors, hospitals, and Crohn's I just tried to distance myself from it. Then I flaired again 4-5 years ago but not as bad. (Extreme fatigue, joint pain, obstructions, weight loss, but no blood, or constant pain.

3. It varies for me. My blood work always shows when something is going on. Bad flairs: pain, blood, fistulas, malabsorption, mouth ulcers, etc. Last flair: eye issues, joint pain, extreme fatigue, poor absorption, weight loss, obstructions, but no blood or pain

4. Now I'm in remission but the extreme fatigue has continued

5. Remicade. azathioprine, B12 monthly injections, Vitamin D 3,000 I.U. per day (Remicade is the first Crohn's med that has given me sustained, stable, clinical remission)

6. I need to avoid raw veggies.

Hope that helps

 

[ronroush7]

I have had Crohn's since 1990. I had remission from 1997 to 2005. It seems like each flare is a little different. I am currently on Stelara, Entocort, Lialda, Synthroid, Prevacid, Gas X and Vitron. I don't change my eating habits.

 

[Turftech]

Thanks. I guess I should answer them myself.. But I'm starting to wonder if I'm in remission or been in a flare for 7 months.

1. Diagnosed in June last year. But I was reading my journal lately and noticed in 2007 I went through a bout of strange diarrhea without any other symptoms which makes me wonder if it started then.

2.i have no idea about flare and remission. I had blood and pain, diarrhea and extreme fatigue during my flare... The prednisone knocked all but the diarrhea away. I'm off press now and have constant watery diarrhea, bad joint pain and extreme fatigue.. So I'm wondering am I in a flare still or is my current state just Crohns in remission?

3 and 4 are in above.

5. I'm on azathipurine. That's it currently but if I get accepted for trillium I'll try remicade.

6. I'm so confused as to what to eat.. I'm currently eating just tuna chicken rice cakes hummus and ensures.

It doesn't seem to matter what I eat mind you.. Because the outcome is always explosive watery diarrhea.

6.

 

[ronroush7]

Have you kept a food diary to see which foods affect you? Are You currently seeing a GI and is he keeping track of the disease?

 

[Turftech]

I am currently setting a GI but it's been a slow process trying to find a drug that works. She doesn't help me re food suggestions at all.

Re the good diary.. I'm frustrated currently and don't keep one because everything seems to affect me.

 

[DJW]

I understand the frustration. Food is so individual (trial and error) that it makes recommendations difficult.
A food journal is a good idea.

 

[Ian_H]

I'm so confused. I can't seem to get straight answers out of my GI and I haven't been clear enough on here.. So I'm posting a little questionnaire to help me out.

If you don't mind..

1. How long have you had Crohns?

2. Do you have a typical remission and flare cycle? If so, what is it?

3. What are your symptoms in a flare?

4. What are your symptoms in remission?

5. What drugs do you take?

6. Do you eat differently when in remission? How so?

Thanks

Hello heres my Questionaire

1) Diagnose in 2009 so about 6-7 years.

2) My typical cycle is remission for 4-6 months then a bad flare. I am unsure if its a true remission but at least no symtoms during the 4-6 month "remission"

3) Bloody diarrhea, severe cramping (colon), anemia and B12 deficiency, no appetite. Sometimes low grade fever.

4) I take 150mg Imuran SID, remicade every 6 weeks, Vitamin D supplements and B12. Zofran as needed.

5) I admit that I should eat better when in remission. Overall I eat healthy but slip up with bad things every once in a while. During a flare I eat usually white rice and plain chicken.

 

[tzvia]

1. How long have you had Crohns? 15 years

2. Do you have a typical remission and flare cycle? If so, what is it? More like Im either flaring a little or a lot. Never total remission

3. What are your symptoms in a flare? Little flare= a little diarrhea. Big flare= diarrhea 15 times a day, low energy, abdominal cramping, weight loss.

4. What are your symptoms in remission? Not ever really in remission.

5. What drugs do you take? Entocort-- doing well on it!

6. Do you eat differently when in remission? How so? I'm never really in remission, but coffee gives me a lot of problems and so does spicy food.

Thanks

 

[tots]

i was diagnosed 24 years ago.
I can remember having symptoms as far back as 5years old.
Right now I cant really remember a time I wasn't flaring!
Cramping, severe cramping and diarrhea, fatigue, vomiting at times.
Food triggers are still strong in remission so I would have to say- i really wasn't in
remission just very careful with diet.
Remicade every 6 weeks, Bentyl, VitD. This are the one specifically for CD.
To the best of my ability I watch my diet at all times it will always lead to trouble if
i eat a trigger food or spice.


Lauren

 

[laura98]

1. How long have you had Crohn's? Almost 2 years.

2. Do you have a typical remission and flare cycle? If so, what is it? I am usually on remission when I take Remicade. I had a flare up when I got a virus which led to high fevers and not being able to get my Remicade.

3. What are your symptoms in a flare? Using the bathroom multiple times, fever, loose stool, abdominal pain, loss of appetite, fatigue

4. What are your symptoms in remission? Gained appetite back, use bathroom only 2 times a day, more solid stool, no pain/fever

5. What drugs do you take? Listed below!

6. Do you eat differently when in remission? How so? Kinda of... I try to stick with soft foods. No spicy or greasy food!!

 

[JaimeM]

1. How long have you had Crohns? Diagnosed june 2008

2. Do you have a typical remission and flare cycle? If so, what is it? Nope it's kinda whenever. When I was on remicade I could tell it was getting time to do my infusion as I'd start having a few more symptoms.

3. What are your symptoms in a flare? Constipated diarrhea if that makes sense. I get constipated to the point I take miralax and then the flood gates open eventually and i'll have diarrhea for a few days. I have a lot of pain on my right side during a flare. Pretty extreme fatigue

4. What are your symptoms in remission? I always have pain on my right side abdomen. I have pain in my hips a lot from sacroiliitis

5. What drugs do you take? Cimzia and several herbal supplements.

6. Do you eat differently when in remission? How so? I go to a boost shake diet. Pretty much every meal is a boost, I try to eat one solid meal a day in the evening if I can. Oops just saw this was for remission.. I eat normally during remission.. I limit popcorn.. Popcorn is bad for me.. I love and hate it.

 

[teeny5]

1. Since 2008
2. Had a flare for years then now been in remission for years...no cycle that I can tell yet
3. Diarrhea multiple times a day, stabbing pain behind belly button and lower right side after eating, some nausea, weight loss, night sweats, fatigue.
4. Occasional pain in lower abdomen, poop 1-2 times a day mostly solid, still feel like I get tired faster than what's normal, some aching in joints.
5. See below
6. In remission I can eat almost anything, but some foods if I eat them too often will cause pain and diarrhea. Those foods are beef, salads, anything spicy, fried foods, nuts, popcorn, apples. I can't tolerate milk or ice cream but cheeses seem to be fine. Alcohol is touch and go...recently has been giving me issues which is new. When flaring I live on spaghetti, bean and cheese burritos, rice, and Ensure. If in a bad flare period I have Ensure twice a day and try to eat 1 meal a day even if just soup. It becomes far too easy to just not eat when flaring to avoid the pain.

 

[D Bergy]

1. How long have you had Crohns?

Probably most my life in retrospect, but was not really a problem until the last six or seven years.

2. Do you have a typical remission and flare cycle? If so, what is it?

Not that I can discern.

3. What are your symptoms in a flare?

At first, not many that are easy to detect. Over time I have learned inflammation makes me crabby. Increased mucous and more frequent bowel movements. I have a surprising lack of early warning symptoms, but certainly the mucous and increase in bowel movements are typically my best indicators.

4. What are your symptoms in remission?

No mucous in stool. Infrequent bowel movements.

5. What drugs do you take?

None.

6. Do you eat differently when in remission? How so?

I eat like any normal person. Whatever I want. When flared I cannot tolerate onions,malt, or coffee.

Right now I am eating pizza and saur kraut.

Dan

 

[Turftech]

Thanks everyone for filing that out.. It's comforting setting what others have ate going through as well as what has worked.

Misery loves company.

I wish there were local meet up groups where a bunch of us could meet and discuss issues and treatments. It's do freaking frustrating living in the dark and having to wait months until my next appointment.