Newly diagnosed 27-year-old looking for support/advice-thanks!

[TGrades]

Hi Everyone

I am 27-years-old and recently have been diagnosed with Crohn's disease. My symptoms might have always been present in my life, it's hard for me to say. When I was in college about 5-6 years ago, this is embarrassing, my pants used to leak with puss/underwear was very smelly-went to the doctor about this and turns out an anal fistula was on my buttocks that needed to be removed, so I went through that surgery to remove the fistula. Also during my time in college, maybe once a month I used to have bright red stools-I thought it was due to being constipated/not eating enough fiber/vegetables and regrettably never told my doctor about the blood in my stools back then. I can't really recall in my late teens/early 20's too many bouts of stomach cramps/abdominal pain, I always had an appetite back then.

I always have been a naturally thin person, always been hard for me to gain weight. Last year was when I started developing abdominal cramps pretty much every day. The pain wasn't severe enough for me to be hospitalized or that it altered my life, but it was always kind of present. I knew something was not right and consulted a local gastroenterologist who wanted me to get a colonoscopy.
After a colonoscopy this past January, I was officially diagnosed with Crohn's disease.

It was hard to hear the doctor say I have this incurable disease when in my mind, I was a relatively healthy young person ready to embark on life's journey.

Present day: I saw a local GI doctor starting this past February who started me on prednisone (gradually weened me off, I was on 10mg) and balsalazide (750 mg). The only medication I currently take is the balsalazide.

Right now I am having a flare and am pretty scared. My blood work from yesterday came back pretty poorly and the doctor is concerned about anaemia. My cramps/abdominal pain usually worsen during the evening time, sometimes so bad I have to bend down and can't walk straight the pain is so harsh. I have trouble sleeping/getting in a comfortable position listening to the noises my stomach is making/cramps. Lately after every dinner meal, the cramps begin.

Currently my doctor wants to put me back on a low-level of prednisone to help with the flare/try to control the inflammation-what do you guys think about that?

I'm curious to know how you deal with a flare-any foods you eat/avoid, medications you are on, general advice?

Any input, comments, questions, advice anyone can give me would be greatly appreciated-I wish you all the best of health as well to combat this horrible disease

Thanks,
Tom

 

[Christi]

Hi Tom, i am sorry to hear about your struggle. Prednisone will help you alot to get you back in remission. The food varies from person to person so a dairy might help you to figure out what triggers your episodes. I am on Szp 2 three times a day , 2 Imuran in the morning and lansoloc 1 in the morning. I hope you feel better soon and be strong. Keep us updated.

 

[teeny5]

I think the stronger meds are a good idea to get you out of the flare. Aside from the pain, flaring causes damage to your intestines. I figured out what I could/couldn't eat through trial and error. It really varies from person to person. For me the foods that bother me the most are fried, greasy, spicy, very fibrous, popcorn sometimes and nuts sometimes. Really depends on how I am feeling. When in remission I can eat almost anything, when flaring I can only eat a handful of things and end up going on a liquid diet to make sure I am getting nutrients.

Good luck to you, sorry to hear you are going through such a hard time right now.

 

[manilamaria]

Hi Everyone

I am 27-years-old and recently have been diagnosed with Crohn's disease. My symptoms might have always been present in my life, it's hard for me to say. When I was in college about 5-6 years ago, this is embarrassing, my pants used to leak with puss/underwear was very smelly-went to the doctor about this and turns out an anal fistula was on my buttocks that needed to be removed, so I went through that surgery to remove the fistula. Also during my time in college, maybe once a month I used to have bright red stools-I thought it was due to being constipated/not eating enough fiber/vegetables and regrettably never told my doctor about the blood in my stools back then. I can't really recall in my late teens/early 20's too many bouts of stomach cramps/abdominal pain, I always had an appetite back then.

I always have been a naturally thin person, always been hard for me to gain weight. Last year was when I started developing abdominal cramps pretty much every day. The pain wasn't severe enough for me to be hospitalized or that it altered my life, but it was always kind of present. I knew something was not right and consulted a local gastroenterologist who wanted me to get a colonoscopy.
After a colonoscopy this past January, I was officially diagnosed with Crohn's disease.

It was hard to hear the doctor say I have this incurable disease when in my mind, I was a relatively healthy young person ready to embark on life's journey.

Present day: I saw a local GI doctor starting this past February who started me on prednisone (gradually weened me off, I was on 10mg) and balsalazide (750 mg). The only medication I currently take is the balsalazide.

Right now I am having a flare and am pretty scared. My blood work from yesterday came back pretty poorly and the doctor is concerned about anaemia. My cramps/abdominal pain usually worsen during the evening time, sometimes so bad I have to bend down and can't walk straight the pain is so harsh. I have trouble sleeping/getting in a comfortable position listening to the noises my stomach is making/cramps. Lately after every dinner meal, the cramps begin.

Currently my doctor wants to put me back on a low-level of prednisone to help with the flare/try to control the inflammation-what do you guys think about that?

I'm curious to know how you deal with a flare-any foods you eat/avoid, medications you are on, general advice?

Any input, comments, questions, advice anyone can give me would be greatly appreciated-I wish you all the best of health as well to combat this horrible disease

Thanks,
Tom

Hi. Sorry to hear about your current state. My daughter was diagnosed 2014 and doing well from the inflammation standpoint. Please see my post under the Remicade club for her story on how she got to this point in remission. Of course the treatment is individualized so what works for her may not work for you, but give it a shot.

During her times of active inflammation, I will have her eat small meals and switch to what i call the FAST FOOD DIET. The thing with Crohn's, your small intestine is inflamed. The small interstine breaks down the food into simple carbohydrates. High fiber foods like fruits and vegetables and dairy products (cheese and milk) are complex foods. The small intestine has to break down into the most simple carbs. That is hard for your intestine to do in its current state. Foods like bread, pasta, and rice are the already in its simplest form of carbs, so it these are the easiest to digest. Check out low fiber diet for a more complete list of foods you can have during flare ups. Avoid oily, fatty foods.

 

[Lady Organic]

hi and welcome.

what is the amount (mg) of ''low-level'' prednisone you have been prescribed?
Any change in balsalazine amount?

It is possible your doctor wants to see if you can remain only on a Balsalazine drug or milder drugs with a few rounds of prednisone before moving on to bigger drugs. This is the ''conservative'' approach of managing IBD. Just make sure you have very tight monitoring with your GI and not left long months without being monitored. You have already been left undiagnosed for several years + a fistula, so your intestine needs full and convincing resolution of symptoms asap.
In the meantime, you can take a look at IBD-AID diet (link in my signature), for a possible interesting diet plan. wishing you well.