Glad to know there are others.

[DiphDaph]

Hello Crohns family,

I am so happy to know there are other people who suffer with the same problems I do. I am also happy to know there are people I can turn to for help!

My story started when I was really little...I constantly had stomach aches in school and every nurse thought it was just an excuse to go home. Even though my mother always listened, I am sure she thought I was a nut. Well, years went on and I did (so it seemed) every test in the book. I went on a lactose-free diet for awhile, I was tested for celiac and I tried a high fiber diet. Nothing really seemed to work, so I just managed the pain and went about my life.

Well my freshman year of college came around and I am sure the high amount of stress as well as the what-the-heck-am-I-going-to-do-with-my-life feeling I had every day played a factor, but there were weeks where I would go 5/7 days spending at least half of it in the bathroom. It was even more inconvenient because I shared a bathroom with 20+ girls. I saw my campus doctor and he said eat a bland diet--that didn't work. He said let's do a lactose test--that came back negative, let's do blood work--that came back normal. FINALLY, he recommended that I get a colonoscopy to see what is going on.

I had a colonoscopy when I was 19 (not the best thing to go through at that age) and sure enough they found a part of my intestine that was eroded. They sent it off for tests and it came back as Illeitis. I was on medication for about two years before I decided I couldn't deal with the side effects.

I have been off medication, but I still struggle day-to-day with my Crohn's, even with diet monitoring. Doctors aren't sure what triggers my Crohn's, but it's getting pretty hard to guess what causes it.

That's my story

Thanks
Daph

 

[Jennifer]

Hi DiphDaph and welcome to the forum!

Glad you finally got a diagnosis even though its been going on for a long time. What medications did you start on and then stop, also what were the side effects? Many people do need to be on some sort of medication to help manage their disease to help prevent future complications. There are many different medications out there so hopefully you'll be able to find something that works for you so you can go into remission and avoid future problems.

 

[Cozmo]

Hi Daph,

Thanks for sharing your story. I've recently been diagnosed with Crohns and share your sentiments entirely about how grateful I am to have found this forum and to not feel so alone with this strange disease. So much experience and advice to be found here :ghug:

 

[Angrybird]

Hello and welcome to the forum

I was also wondering what medication you were on previously that gave you trouble? How often are you seeing your doc and have they not recommended something else for you to try? When the disease is active it can be hard to then find your trigger foods, it may be worth looking into going onto a special liquid only diet, perhaps even enteral nutrition, this will give the tum a chance to settle down and then when you start to re-introduce foods you can keep a food diary of what gives you problems.

AB
xx

 

[EthanPSU]

Hey,

Sorry to hear that it was bad during college. I know what thats feels like since I was the same and it sucked. THe college atmosphere def does not help crohns disease. Anyways, I hope you find a medication that puts you into remission. It took me ahwile and tons of different meds to finally find a decent one.

 

[DiphDaph]

Hey everyone! Thanks for the support, I really appreciate it

As for medication I feel like I have been on a lot! But I have been on-enticourt, pentesa and I feel like there was one more but I cannot remember.

During flare ups, I take Hyoscyamine.

I hope that helps

 

[David]

Hi there and welcome to the community! I'm so glad you found your way here

Am I understanding correctly that you're off all medications? If so, would you like our opinion on that or would you prefer we just offer emotional support for now?

Either way, thanks for sharing your story and I hope to see you around more often!

 

[Pirate]

Daph, just wanting to welcome you and let you know that there are plenty of us out there and we'll be here for you whenever you have questions. There are plenty of alternatives to meds here so you really need to check them out. You may find something that fits you.

Good luck

 

[Scaryman]

Daph, welcome aboard thanks for posting your story. Please keep us updated on how things go.

 

[DiphDaph]

Thanks everyone.

David-Yes, that's fine. I am open to all discussion.

I have been pretty lucky in the sense that I have been almost flare-up free for about a month, but within the last 2 weeks I have had 4 flare ups. I don't understand what my body does....

 

[David]

Are you off the medications because your doctor doesn't feel you need them or have they recommended some medications and you don't want to take them for some reason? If the latter, what is your reasoning? Note I'm not going to try and sway you to taking specific medications if you don't want to, but maybe we can find a route you ARE comfortable with. Completely untreated Crohn's disease is really scary and I'm concerned about you

 

[Lustforlife]

I'll echo the sentiments in the last sentence above. There is something out there that will help you feel better, be it pills, biologics, diet, juicing, EN, herbs...the list goes on. You just have to persevere to find what works for your body. In figuring out what triggers your crohns (since from your last post it sounds like it triggers frequently and resides) an elimination diet may be most helpful. The pattern of flares that come and go (such that you count them as 4 and not 1 longer flare ) suggests it may be a food reaction, which elimination diet can help pinpoint. You can search that to see how it works! It takes some time...but usually worth it.

ps. Are you a KU student? If so what do you study? What do you wanna do "for the rest of your life", if you've decided that is

 

[DiphDaph]

I don't want to take the medications because they made me bloat and I didn't feel like myself. I haven't seen my GI doctor in a really long time (mostly because he didn't seem to care about me), so I haven't been back.

I'd like to find something that works, but when I was initially diagnosed, they thought my triggers were fresh fruits & vegetables...but I haven't really had any problems with those at all. Still, not knowing what my trigger is, is really frustrating!

I am glad to know someone is concerned, because my GI doctor was not.

I am not a KU student, I am a Washburn alumni

 

[David]

PLEASE PLEASE PLEASE get a new GI and get in to see them as soon as you can. It is imperative that you find a good GI and find a treatment option that works for you.