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Hi all,

I was just diagnosed today as having moderate to severe Crohn's Disease. It all happened entirely out of the blue. I'm 25 years old, never had ANY medical issues, then one day I get a bellyache that turned into bloody stool and after tests and tests, today I'm told that I have a lifelong illness with no cure in sight. I'm not so shocked by the diagnosis, but I'm scared to death about maintenance. My doctor has had me on prednisone, which I'm scheduled to stop taking in a few weeks and I'm supposed to start taking Imuran very soon. This is going to require blood tests every 3 months, doctor's visits all the time FOR THE REST OF MY LIFE. How do you deal with that? Does it get easy? Because right now I can't stop crying at how daunting and terrifying this all sounds.

Do any of you know anything about Imuran and its side effects? Any personal experience? Good experience, I hope.

Am I allowed to have a few drinks on the weekend? I'm afraid my psyche will suffer immensely if I can't let my hair down once a week with the girls. How drastically am I going to have to change my lifestyle? This is just awful.

Also, how legit is alternative medicine alone in dealing with Crohn's? I'm terrified of screwing up my immune system, and possible hair loss, and acne. I've had acne all my life and just recently spent a lot of money trying to repair my skin, and I'm scared this medication is going to destroy all my efforts.

Basically I'm just terrified of EVERYTHING and I already deal with severe anxiety.  Do you guys see a therapist to deal with this?

 Reply posted for ekhensell.

While Imuran helped me tremendously for many years, it has also caused MAJOR damage to my liver. It's very surreal to wake up one morning and start vomiting large quantities of blood! Because of the damage done to my liver, blood was not flowing through it properly, causing portal hypertension. The veins  and blood vessels that were forced to handle the blood flow that would normally go to and through my liver are not made to handle that kind of volume. The result was gastric and esophageal varices, one of which ruptured and bled into my stomache. I have since had to undergo a major surgical procedure, called a surgical shunt, where they reroute some of the blood flow from the liver to the vena cava, using the vein that runs from the kidney. I now also have to take meds to keep the ammonia levels in my blood at a safe level, since the liver isn't filtering the blood as effectively, or suffer severe bouts of confusion and disorientation. Exercise EXTREME CAUTION while taking imuran!!!!!

 Reply posted for ekhensell.

I'm 27 and I've had Crohn's for about 10 years now. I tried Imuran probably in 2005, and my gastro at the time took me off of it because I got a kidney infection. My gastro now, though, is talking about possibly starting me on 6MP (which is Imuran's sister drug) because my old gastro never found out if there had been a correlation between the Imuran and the infection!

Basically, regarding your diagnosis and your life, you basically just do what you can do! If you feel well enough to go out and have a few drinks, do it! If you don't, lay low for the weekend. I know that when I'm feeling pretty well I can go have a Mike's Lemonade (yum!) but that I'll have to take some Tums after because it gives me heartburn. There's no real right or wrong answers that will work for everyone; it's just a lifelong learning experience that you've now been stuck with sadly!

Just start building a support group of friends/ family, doctors, and other folks with similar situations. That's one of the best things to have!

Regarding alternative therapies, I'm not 100% sure what you're referring to, but I've gone to a naturopath who has suggested some vitamins/ minerals. I've also gotten massages, which help a lot (I get back pain when my Crohn's flares). Basically, all-body wellness will translate into helping with flares. Good luck!

 Reply posted for ekhensell.

I am in the exact same boat as you, well sort of. I am 24 and I never had any symptoms (or previous health problems), except blood in my stool and after a trip to the Emergency room and eventually a colonoscopy from a GI specialist turns out that I have UC.  
This is all so new to me and I have done my fair share of crying as well and there is absolutely no shame in that!  Sometimes, that's our only way we can react.  I mean, what else can we do?

I was diagnosed with the worst case of UC, pancolitis and that puts me at the greatest risk for co-rectal cancer.  Oh joy. 

We just have to keep our heads up and pray that a cure is coming.  We'll have our day.


:) Best!

Brittany 


fb: Brittany Anne Hill
twitter: Brittyannehill

 Reply posted for ekhensell.

I got UC about 4 years ago and it was rough at the beginning. The doctor I had was awful and told me almost nothing about what to do. I was doing blood tests every 3 months and now I am doing it every 6 months. It does get easier. Once you get it under control with your meds and diet your life will start returning to normal. I also probably wouldnt drink any booze for awhile either. I used to drink a lot (vodka, tequila) and never had a problem then I got UC and I cant have a Mikes Hard Lemondade without getting buzzed. My lifestyle changed huge and actually I think its better now. The partys stopped, the junk food stopped. I ate more healthy food since i was losing more nutrients and I started to do yoga to help with my stress since that is what causes my flare ups to occur. I have grown to love having a go with the flow (no pun intended) type of attitude makes life a bit easier. Also i can get out of doing chores and say that im tired, lol. You need to embrace it. I use jokes or if someone says poop around me and id yell at them for there bad language and it gets a  good laugh. I have also learned not to be ashamed. I have had times where I did not make it to the bathroom or had to pull over and run into the woods. It happens and I deal with it. On a lighter note I do know where every bathroom in the county is. (Speedway and UDF are 1 person bathrooms so if the womens is occupied just use the mens).

I hope something out of all that has helped and remember you are not a lot. 

 Reply posted for ekhensell.

gah trust me i totally know how you feel about crohn's hitting you out of the blue >.< i was 19 when i got diagnosed w/ crohn's & it was definitely frustrating, at 1st was told it was just hemorrhoids then eventually got diagnosed w/ crohn's. i hated not being able to eat whatever i wanted cuz i love food, & not being able to figure out what foods triggered the pains sucked balls. didn't help that my 1st gi doc had me on prednisone for like 6 months cuz when he prescribed it said to call if had any problems & never told me when i was supposed to stop taking them. he was way too cheerful & didn't really seem to care. the 2nd gi doc i saw scared the *** out of me lol but i only visited him the 1 time. it's very frustrating cuz i'm currently uninsured & have been denied social disability twice! luckily my 3rd gi doc that my general doctor referred me to is freaking awesome. he sincerely cares about me & has given me a few sample medications usually worth $500+ for free cuz he knows we can't afford it. lyalda was not fun for me haha but it helped a bit until recently he managed to help me get on humira for free. i love being on humira except for the fact that it completely destroys my immune system so winter season has not been fun for me. i rarely got sick before so being sick 24/7 now is new to me. i'm currently back in school but again frustrating since i've missed a few classes cuz of being sick w/ sinus infections, colds, stomach bugs, flu, etc. . .  like i've mentioned since i especially don't have health insurance i do get scared about the future cuz of how i'm gonna afford for procedures i need to have like another colonoscopy, but having people who sincerely care about you is a huge relief. sorry for my random ramblings >.< if you ever need someone to talk to feel free to e-mail me: quixoticlatina89@hilarious.com

 Reply posted for ekhensell.

To ekhensell first off I know exactly how u feel I am 25 too but I've had uc since I was nine in the beginning u may feel lost or thinking why me but it gets easier to deal with it is a condition that not everyone will understand what ur going through u will have good days ad bad days but never ever give up there were many days where I felt alone and like giving up but I keep fighting I missed out on a lot of school and other things I. Even missed my own sisters graduation but it got to a point where I said this disease will not control me I will control it if u ever need to talk to someone ur age write me cuz I know if I had someone with this when I waz younger it would have helped feel better and always be strong even times when u have nothing left to give!

 Reply posted for ekhensell.

Hi!! I know being diagnosed with a life time illness is very scary! I was diagnosed with ulcerative colitis when I was 15 and am now 24.  Like Delirium, I also had to change my diet. And it seems like a lot at first because you have to get used to your symptoms, eating habits, taking medication but with time it becomes a routine and you will find what works and doesn't work for you. I don't drink often but when I do I make it count haha...I honestly only drink a few times a year because I don't want a flare up to come from it. I wish you the best!

 Reply posted for ekhensell.

haha it does get better! it sucks in the beginning bc i went through some trial and error stuff to see what i could/couldnt eat.  I was 16 when i was diagnosed and when i turned 21 had to find out the hard way that i cant drink a whole lot.  i still go out and have some drinks just cant over due it bc stomach will hurt.  i havent ever had to take imuran so cant help you there.  ive had crohns for 8 years now and you just kind of learn to deal with it, nothing you can do about it so have to make the best of it.  ive changed my diet around alot this past year and have been feeling alot better.  if you want to email me and ask me questions about anything you can! Kirklandmj@gmail.com