Newbie here with my crohn's adventure

[misterquin]

My names Alex, I'm 19, and have been a crohnie for over a year now. I hope some of you will enjoy my story and I'm glad to be a part of this great community.

I was a senior in high school when I began experiencing symptoms. Some blood in stool and generally feeling tired a lot. Nothing too alarming according to a doctor I saw. This went on for a few months and escalated into my first full blown flare up- and boy was it a flare up. Luckily it happened after graduation so I was able to walk the stage. Anyways I lost about 25 lbs in the course of a few weeks and ended up in the emergency room. It seemed to happen so suddenly- in the span of 2 weeks my health had been utterly destroyed. I was a literal skeleton and felt like I was going to die.

After a week long hospital stay made much easier by good ol' dilaudid (a painkiller) I was released and given your typical crohnie cocktail of prednisone, azathioprine, and probably flagyl. Things were hard the next few months,getting used to this "new lifestyle" but I eventually went into remission.

Now the remission period of my disease was unbelievably great. Could eat anything basically, was only on cimzia and azathioprine and felt great. Crohn's hardly influenced my studies- I almost forgot I even had the disease! Occasional diarrhea and tiredness was all I experienced but it was never for long. But alas, the good things in life don't always last.

After my first year of college, things fell apart again as I entered another flare up, was put on entocort, and then began having sharp pains in my stomach and back. Turns out my gallbladder had to be taken out. Oh joy.

After surgery, I recovered pretty well until another flare up came along. Which is basically where I am now. I'm on 30 mg of prednisone and don't really know whats going on with my body right now! I'm on zantac and prilosec for acid reflux and gastritis. And I now have a few days of no bowel movements followed by a day of severe diarrhea and severe cramping. I feel I'm getting better, then the next day I'm on the toilet for hours at a time! All I want is remission, as I'm sure everyone wants.

Thank you everyone for at least taking a look and I hope to learn some good tips and share my experiences with this great community. :smile:

 

[tpd320]

I here ya about being healthy one minute then knocked on your rear the next. I was in excellent health, exercised everyday, ran 5 miles a day. Life was good. Then in a span of about three weeks, I went from 185 down to 155 and was in and out of the hospital several times for the next month. Had to have surgery myself.

I think the key is for the doc to find the right combination of meds. It is different for everyone. At least thats what I am told. I am about to switch to Remicade from Humira. My doctor won't accept me being in any pain. I guess that is a good thing. She is constantly looking for that magical cocktail. Hope they find it for you soon.

 

[Dallies]

Hiya Alex, I hope that you gain remission very soon. Welcome it's lovely to have you here xxxxxxxxxxxxxxxxxxxx

 

[Dexky]

Hey Alex, welcome!! Man, I'm starting to think there is something in the water down there in Texas cause you're about the umpteenth new member from there in the last few days!!! See MysteryLocket's thread!!!

I'm sure it sucks to have to deal with this at your age especially!! I can't imagine what that would have been like. Anyway, I hope you find remission very soon!! Good luck!!!

 

[seaofdreams]

Welcome Alex!
There are a few of us on here around the same age and we're always happy to listen and chat if you need
Looking forward to seeing you around the forum

 

[DustyKat]

Hi Alex and :welcome:

I'm glad you found your way here. Just a couple of questions. Where is your Crohns located? What tests have you had done? When is the next visit to the GI?

I hope the pred does the trick for you. This a great place for support and info and there are loads of members here your age so I hope you stick around as you will be a very welcome addition. Good luck and welcome aboard!

All the best,
Dusty

 

[misterquin]

Thanks everyone for the warm welcome!


DustyKat, I've had many tests- 2 colonoscopies, endoscopy, EGR, the VCE or "pill cam", CT scan, and hidascan and my crohn's is located in my left ileum. I'm supposed to see my doc again in about 2 weeks.

I've even had my heart checked recently after a GERD attack. Went to the hospital and the ER doc said I had paracardidis or inflammation in my heart. Fortunately he was completely wrong and the cardiologist said it was perfectly healthy. Man was that a scare though. Honestly, I'm convinced my recent flare up was triggered by that whole event. I basically had a panic attack after he mentioned my heart and my crohn's symptoms started up after that whole ordeal.

 

[DustyKat]

Hey Alex,

Are you taking any supplements like B12 and Folate?

Dusty.

 

[Astra]

Hi Alex
and welcome

Sorry you're having another flare after enjoying some relief. How about you ask about upping the Pred? 30mg may not be high enough to blitz this current inflammation? Maybe start on 50mg then taper down? I only say this cos I started on 60mg in hospital then tapered down, took 5 months but it worked. But I didn't have any D on Pred at all.
hope your doc can find a long term med for you soon,
glad you found us, lots of young uns on here for you.
lotsa luv
Joan xxx

 

[misterquin]

DustyKat, I'm not on any supplements though I ordered forvia a multivitamin.

Astra, I'm planning on calling my doc tomorrow. I've been having VERY bad pain and nausea with the cramping. I'm not sure what exactly is going on. Becoming kind of worried. I'd hate to lose more weight. I'm 5'10" and only about 100 lbs!

 

[Astra]

Hey Alex

re: supplements, it's important that you take some calcium supps whilst on Pred, ask your doc, and good luck with your phone call, hope you get to see him. Mention the nausea, especially if you start vomiting too, could be a sign of blockage.
xxx

 

[misterquin]

Thanks for the suggestions. Will ask about supplements. It's strange because it comes in waves. I'll feel fine, then suddenly I'll get intense cramping that lasts for hours along with nausea and is only relieved after a few bm's. I don't know what I should be eating either. So stressful!

 

[Astra]

Hiya Alex

Search for the low residue diet here on the forum, it works for me! White bread, white rice, white pasta, potatoes, chicken, turkey and white fish and plain biscuits like Rich Tea or Arrowroot. It will give you some relief from the frequency and cramps. Drink plenty of water too. Remember, all white foods only for now, then slowly introduce coloured food, fruit and veg.
hope you get some relief soon
xxx

 

[Jennjenn]

Welcome

I hope you start to feel well again soon.

 

[rottengut91]

Welcome Misterquin:bigwave:
Like Astra, I would be concerned about blockage, or narrowing. Before my second resection, my bowel had narrowed to the diamater of a pencil. You may not necessarily have a complete blockage, but it sounds like you're working up to one. I too, had very severe pain. I was one Prednisone, but it did not help, I still had to have surgery to remove that portion of bowel. I would make sure you tell your doctor you may be concerned this could be why your having these symptoms. Don't feel shy about telling your doctor how you feel. You are in charge, don't forget that, he/she works for you.

:goodluck::getwell:

:sun:

 

[misterquin]

Thanks for the response Julie. I had no evidence of an obstruction in July after my pill cam. Do you think it's possible for a narrowing or blockage to form so quickly? I'm trying to stay calm but this is very new/ scary for me.

 

[misterquin]

Thank you Jenn. That's all I could ask for. Just to get this back under control and get back to living my life!

 

[Manimation]

Is the prednisone not giving you a crazy appetite? When I went on it I ate like a 300 pound football player. You should be more than 100 pounds!

Sorry its hitn you so bad at college. If you're far from home and parents, it can be a little scary.

Probably best if you avoid the school cafeteria, most tend to put laxatives in their food.

Welcome to the forums!

 

[seaofdreams]

Is the prednisone not giving you a crazy appetite? When I went on it I ate like a 300 pound football player. You should be more than 100 pounds!

Sorry its hitn you so bad at college. If you're far from home and parents, it can be a little scary.

Probably best if you avoid the school cafeteria, most tend to put laxatives in their food.

Welcome to the forums!

Pred doesn't really make me hungry either. I get enough other side effects to make up for it though hahaha.

 

[Manzyb]

Welcome Alex! I hope that you start to feel better soon and you enjoy having the forum. There are lots of awesome people here to help out! :0)

 

[misterquin]

Is the prednisone not giving you a crazy appetite? When I went on it I ate like a 300 pound football player. You should be more than 100 pounds!

Sorry its hitn you so bad at college. If you're far from home and parents, it can be a little scary.

Probably best if you avoid the school cafeteria, most tend to put laxatives in their food.

Welcome to the forums!

Trust me, if I could I would be eating A LOT! but with what's going on it'll just cause the pain to get worse. So I'm eating small meals every few hours. I'm hoping if my doc increases my prednisone, the pain will be less and I'll be able to eat more.