What will things be like for me? How are things for you?

[Haliltugrul94]

Hello everyone!

It hasn't been so long since my diagnosis, just about 5 months now. I want to know what to expect because I am very tired. With my beginning, it all started for me in July, I would say September but now that I think back there were some other signs I missed.
First it started with a major lack of appetite, with a quick start of weight loss, initially being 74kg, I didn't quite notice it then, but i would barely ever eat lunch, maybe just a bite of food then back to work, and in September my dad needed help at work so i quit my job at the grocery store to work for him. One afternoon while working I started feeling a very sharp pain in my stomach, it was intense, and over 2 weeks it grew intensely to the point where tears would draw from my eyes while i laid down anywhere I was in fetal position until it stopped, I was hopeful that it would stop but with the start of the random pain I also started getting extreme fatigue, and diarrhea, I have had loose stool ever since the first time, I don't remember a time letting out something normal looking. TMI i know sorry

Well in november i had a colonoscopy and my gi said he thinks its crohns and called me back a week later on my birthday letting me know the diagnosis was positive for crohns. And what i really want to know is, will i have diarrhea for the rest of my life? will i ever be able to go poop only once in a day? am i gonna be able to go to the washroom without any pain or is this all pretty much the norm i gotta live with now? i first went on budesonide for 3 months and then my gi started me on imuran, or azathioprine, i've been on that for 2 months now i guess. anywho, I'd like to hear from others. thanks goodnight

 

[Christi]

Hi im sorry and sending you support. I do not want scare you but i will tell you the truth. I have pain everyday cramps and tenderness. I go between diarrhea and constipation at the moment its diarrhea my stomach wakes me in the morning not my alarm. I have nausea every day especially in the morning and im always tired cant even read without falling asleep. Thats just me i struggle allot and have a few other issues to , everyones diffirent and there will be bad and good times just dont let this get you down

 

[Nancye50]

So much of Crohns is getting on the right medicine. I started on Imuran but quickly progressed to Humira when I developed a fistula. Humira has been great for me and I only rarely have symptoms.

 

[Lisa]

As Nancy stated, getting on the right medication(s) is key to getting your symptoms under control. If you are still having symptoms while on medication for any length of time, it is probably due to the medication not being effective. That being said, there are some medications that take some time to build up and be effective, but your doctor should give you something else to help put you into remission until the long-term treatment is effective.

 

[Haliltugrul94]

Hopefully one day we can get it all under control with the right meds, Thanks for the replies ladies. It isn't necessarily fear of what's going to happen but fear of what isn't! I guess since I've only been in a flareup and haven't been able to go into remission yet, I didn't know if i was in remission since my stomach aches aren't nearly as bad as before, and I don't know whats gonna happen change when it does. All i really wish is for my body to be able to digest properly and only poop once a day so i can regain some weight.. I try try try but continue to look skinnier as time continues

 

[AnnieYa]

I've not been in remission yet (developed 1.5 years ago) but down to meds. Will be trying another one soon. I had to give up running, cycling and my motorbike... at least for the time being. My mum was diagnosed three years before me, achieved remission on aza for two years. She's not as open to me about symptoms, but... she went back to drinking lots of coffee, went back to work and never complained/seemed snappy. I believe the occasional bout of d.

I think some people manage perfection in remission, but most have to deal with minor symptoms and still watch what they eat.

 

[canary]

sorry your introduction to Crohn's has been rough. It's going to get better, probably! And if you end up like me you'll feel good most of the time, sometimes for years, and your life will only occasionally be punctuated by brief periods of pain and surgery. then you'll feel good again until you don't!

to answer your questions, at least in my 20 years of having this disease:
will i have diarrhea for the rest of my life?
probably. I do. there are worse things that could happen, though.

will i ever be able to go poop only once in a day?
probably not. I think that's happened to me 10 days in the past 20 years.

am i gonna be able to go to the washroom without any pain or is this all pretty much the norm i gotta live with now?
hopefully! I do about 60% of the time.

CHIN UP it's gonna be okay.

 

[Haliltugrul94]

sorry your introduction to Crohn's has been rough. It's going to get better, probably! And if you end up like me you'll feel good most of the time, sometimes for years, and your life will only occasionally be punctuated by brief periods of pain and surgery. then you'll feel good again until you don't!

to answer your questions, at least in my 20 years of having this disease:
will i have diarrhea for the rest of my life?
probably. I do. there are worse things that could happen, though.

will i ever be able to go poop only once in a day?
probably not. I think that's happened to me 10 days in the past 20 years.

am i gonna be able to go to the washroom without any pain or is this all pretty much the norm i gotta live with now?
hopefully! I do about 60% of the time.

CHIN UP it's gonna be okay.

Thank you Canary :mademyday:
I appreciate all the answers people were able to give me, but this is probably the one i needed to hear the most. I'm happier and more relaxed now that I have a better understanding of what to expect, I guess by the looks of it I'm as great as i can be, I was expecting things to go back to the point where I don't take meds and have only one bowel movement every morning and when i was able to eat the spiciest of foods :'( (thats probably the hardest thing for me lool) without any reactions. But I'm ready to start learning more on how to live with it, get back to working and other things, anyways, thanks alot, your msg answered 99% of what i wanted to know about everything cheers, goodnight.

 

[scl]

I have a very easy time with my Crohn's and take no medication. In fact, the only medication I have EVER had was two doses of prednisone and two doses of Remicade shortly after diagnosis and a 9 cm bowel resection.

A year ago I started eating a high fiber vegan diet and that relieved the one symptom I had at the time; diarrhea. (And yes, I have 1 or 2 normal bowel movements a day.) Since then all my blood tests and colonoscopy are normal. Lately I wonder if I am cured.

Everyone's disease is different. My suggestion is to be patient in finding what works for you. A change in diet was key for me. My energy levels are fantastic.

Ii wish you the best in dealing with your illness.