Crazy time since being diagnosed with crohns and colitis

[hannaho]

Im 16 and a year and a half ago i was diagnosed with crohns after years of suffering terribly. I had a colonoscopy and an OGD when i came out from having the cameras i started bleeding terribly and was admitted to hospital, i was but on predisone 45mg and pentassa i was then on a liquid diet.Whilst still on steroids i had another 8 flare up that landed me bac in hospial for weeks at a time. I eventually came of the steroids and crohns became a bit more manageable. Then last november i had the wost flare up and was rushed to hospital were my temperature was sky high i had leaking fluid from my bowel, to cut a long story short ended up having to b resusitated nd had emergancey surgery i was then on a ventilator in intensive care and after two weeks in hospital was back on my feet. I have only had minnie flares since then and recently had the cameras done again and got horrible news ,the crohns has got worse and spread a bit further round the bowel. So is lovely to find people i can relate to.x

 

[Crohn's 35]

:welcome: to the forum! Ghastly pain and scary stuff you have had! Yes, unfortunately Crohns can spread and even sometimes after surgery. You are pretty young and best to not be on steriods if you can help it. I would think Humira or Remicade could help better control your symptoms and pain.

We know how you feel some of us have landed in the hospital more times then we can count. Are you on a special diet? Keep us posted, ok, glad you found us, lots of people here your age. Hope we see more of you. Hugs!

 

[hannaho]

Thanks so much im currently just on a high dose of peentassa and thankfully havent been on steroids for a while. I just dont eat my "triger" foods well ill b honest do my best. i was on aziathiprine for a while but was toke off after side affects but they are reconsidering putting back on so glad to have found all of u that understand and going throught what i am.xHugs!

 

[Crohn's 35]

Everyone has different trigger foods, and stress doesn't help either. Most people stay away from dairy, wheat and some avoid Gluten. Chewy meat, or Turkey is one of the hardest to digest, and cook or steam your veggies. When do you see your gi next? AZA was not my drug, I became allergic. Pentasa is a mild drug, so hopefully you will continue that for awhile. So glad you found us!

 

[hannaho]

Yeah my trigger foods is dairy and high fatty foods i find red meat hard to digest and certain veggies like sweet corn i dont know why. I see my GI next week and we will be deciding to start on the AZA. I had to come of because it effected my liver the side effectts of that drug are scary, thats horrible you became allergic want tablets are u on. Thank u! so glad i found u too.x

 

[Crohn's 35]

I only on Flagyl one, every other day, or Cipro , depends on the side effects. Since I react to everything I have to cope until one day a 3rd surgery or a cure... Corn in any shape or form is very hard to digest, not a great nutritional food anyways. Popcorn is a definate no no.

 

[BookNerd710]

Hi Hanna, My name is Kim. I'm from the states. Anyhow, I was diagnosed at 10 yrs of age. I'm 25 now. So 15 years I have battled this disease. Suffice to say, it was not easy. At 10, I was put on Pentsa, Predisone, and a slew of other medicines. I didn't know the awful side effects of Predisone then, but I do now. I was on it for around 3 years. Every time they tried to wean me off of it, I had one flare after another. Finally, off of it, I struggled with taking my meds. I always thought it made me feel different. Yet, I managed somehow to keep myself in a chronic flare but managed, also, to not land myself in the hospital until I was in the 7th grade. Then, I was hospitalized for 10 days. Got my levels, hemoglobin, back up and back on my meds. I was also going through dealing w/ my parents divorce. Make a long story short, after years of taking, not taking my meds. I am finally in remission with my Crohn's and on a schedule of medicine which include: Lialda, Omeprozole, Iron, Multivitamin, Folic Acid, and Citrucel. I'm on all of this including an antidepressant, Pristiq. I know that your struggles have been far worse than mine. But I know you can do it and perservere because you're a girl! I know for sure, my 3 brothers could not have managed with this. I have had other problems attributed to my Crohn's, aside from the low iron and depression, but I hope that I've helped.
I would stay away from any high fatty foods, cheese or dairy, popcorn, corn, broccoli, and other veggies that aggravate your system. I know a lot of the stuff I mentioned above, bother me so I can only believe that they do the same for you.
Stay smiling.

 

[hannaho]

Thanks so much it is great to hear ur story i am constantly tired a haveno energy so im waiting to see weather i need iron. Like urself i had trouble comming off predisone everytime i wasweaned off i would have a flare. I am better than last year as i have had more time out of hospital. 5 months ago i started to feel a bit depressed as you know having crohns can be so hard a many people dont understand, like for exaple i was ath the hair dressers and they know i have crohns as we have known them for a long while ,,well to cut a long story short on of the hairdressers said to me "crohns is just were u need to go a toilet alot" i was like if that was the only problem that comes with it . so being able to relate to you is really comforting. I have been feeling less depressed recently and as u said us girls will get through this still smiling.. I hope u stay well and thanks so much for all the lovely things u said.x

 

[BookNerd710]

Hi Hannah!
I know! So many people have told me, oh it's just where you have to go to the bathroom a lot...if that was the only thing I had to deal with, it would be awesome! But not for me. I was seesawing, as I mentioned before, with my meds and finally in my second year of college, a doc told me about Lialda, which is the same as pentsa but is specially coated to only release in your digestive tract. So it stays in you longer vs. the pentsa which releases right away. Having low iron sucks wicked bad. Last Christmas I was visiting family in between semesters and was so low on my iron that I had to go to the hospital's e.r. to have 2 transfusions of blood. That isn't the first time I've had to have that done. Once when I was younger, I had to have blood. I've had to be on medication for depression for years because it just took its toll on me. Needless to say, I am kinda thankful for everything I've been through with Crohn's. It makes me a stronger person. So I'm here for ya if you need to talk..

 

[hannaho]

I might ask my Gastro doc about that med as i have been all over the place with my meds. I know having low iron is so annoying ,my god u poor thing having to have blood trasfusion, you have been through a hell of a lot and you still sound like a very strong person and i have to say having crohns has changed my life but i am a lot more mature than other people my age and i see things in a different light, it has definitly made me stronger and thank u so much for ur support.x

 

[BookNerd710]

Xoxo to you Hannah. Ask your gastro about it...it is well worth it. It's worked for me for 3 years now and counting. Definitely worth asking about. Like I said, in college and even in high school I would have to work my schedules around when I had to take Pentsa which only resulted in missed doses sometimes the whole day. Back then I was on 32 pills of Pentsa in one day, every day. I hated taking all of that. Anyway, good luck.

 

[hannaho]

I definitly will ask my gastro doc about it as it sound like it has helped u a lot i know it such a pain having to work ur life around taking meds,often feeling like the odd one out at college. Thank u again...xoxoxo.