19 yearold story (celiac-colitis- crohns)

[atvman18]

Hello everyone,

I'm a 19 year old male who is currently attending Montclair State University in New Jersey for Business. I have one sister and one brother (neither have crohns).

Now for my story...

At age 10 I was diagnosed with Celiac Disease with no prior family history. I wasn't growing and I was getting horrible stomach aches and after a few blood tests my doctor found out that Celiac was the problem and I was put onto a gluten-free diet. This seemed to solve my problem. Yeah, it sucks giving up all that food, but I felt better. After a few years of being on this strict gluten free diet, I found that whenever I had a slip-up and ate something containing gluten I would violently puke. This taught be to be more responsible with my diet.

Now for the fun part...

So all of a sudden around age 16 I start getting diarrhea every single day. I had a endoscopy and it came back that I had colitis. Great! So this is when my gastroenterologist told me to basically drink pepto everyday religiously and it would be gone within a few weeks. He even warned me that my stool would turn black (because of the pepto). So I did this for about a month and still....nothing changed. I figured I wasn't taking it enough so I tried being more consistent. Still, nothing changed. So about 8 months later I finally told my parents that something was wrong and I still had diarrhea everyday. So yet again, I was scheduled for another endoscopy. This time the results were different. They took a biopsy and concluded that I had Crohns Disease!

Now for the not so fun part...

So now I have Crohns disease. What now? Well my doctor pretty much wanted to put me on everything in the book even if I was only 18. I started off my first week of college on Prednisone. I heard it lowered your immune system, but as soon as I started taking it I felt severely sick and I got permission from the doctor to stop it. Next, the doctor put me on a course of steroids, which pretty much did absolutely nothing beneficial. Then my doctor convinced me and my family that Humira and Remicade were my only last options. At this point I was complaining on extreme pain and cramps from the disease. I agreed to take Humira. After 3 months the doctor told me that my inflammatory markers were starting to decrease, but after about 8 months I still felt the same and got really fed up. I was actually going to my regular physician as well for pain management (although there wasn't much he could really give me and usually insisted that I go to my gastroenterologist for the pain. I really had enough of this crap...

I went to get a second opinion.

I'm now currently 19 years old and i'm seeing a new gastroenterologist (non-pediatric). I've weened off the Humira and i'm now taking 2 Asocal twice daily. I haven't noticed any immediate differences yet, but I feel a lot better about the doctor I have now. I was also prescribed Chlordiazepoxide which sometimes is effective with helping my stomach pains. I have a few left over vicodin that I keep for my really bad days where I feel like I can't handle the pain.

At this point, I'm having a lot of trouble dealing with Crohns. I clearly haven't had a very comfortable life, but i've been optimistic up to this point. I feel so hopeless right now. I'm a 19 year old sitting in his dorm room wondering if i'll feel well enough today to go to class and walk around. If you ask me it's frigen sad. Mentally i've been trying to hang in there, but when i'm in such bad pain that I can't do anything but curl up in a ball on my bed it's hard to really be positive about much. If you guys could give me any suggestions about medications or what I could tell my doctor I would greatly appreciate it! Any support would really help me at this point in my life.

Thank you for listening and don't hesitate to reply!

 

[chrisnsteph1022]

Welcome! Asacol is a pretty mild drug. Some docs like to start off with the big guns (Humira, Remicade, Cimzia) and some use them for only severe cases. Do they still think you have Celiac's in addition to the Crohn's? That would be awful to have both, but I know a lot of people with Crohn's benefit from going gluten-free.

 

[atvman18]

yes, I have both. It really sucks. I've been able to handle Celiac but Crohns is a whole other ball game..

 

[MADiMarc]

I wish I had a magic pill or some wonderful words of wisdom for you. All I can do is offer you support. This forum has many people that have wonderful ideas and have much success with different treatments. Like you, I have tried the biggies. They didn't work for me either. I know it sucks being young with this horrible disease. If you haven't done so, poke around the site. Lots and lots of information can be found here.
Good luck and welcome!

 

[vickyhunter]

Have the docs tried you on an immune suppressant such as azathioprine or 6MP? It comes with it's own hefty side effects and takes a few months to work but it's worth ago if you're still very poorly.
so rubbish that you have to handle 2 illnesses!

xxxxxx

 

[atvman18]

Flares up..

Yeah i actually have. Haven't had a break through yet. This week i've been having some of the worst flare ups of my life and i'm feeling really helpless, I'm taking my meds...is there anything else I could do? I'm in so much pain. I won't go to the ER unless i'm dying.

 

[vickyhunter]

Are you not on steroids at the moment? And I know what you mean I've only ever had to go to the ER once when I was losing so much blood and had to be admitted, but I am conscious not to go unless it's an emergency - but if you are in a lot of pain they could potentially give you v strong pain relief that you couldn't get at home, so if you get desperate just go there it's worth a chance
xxxxxx

 

[scottmyster]

HI Atvman, It seems to me you are still flaring and that is not good. especially if the present medication is not working. Asacol in which i am on is only a maintenance drug for when your inflammation goes away. I know you don't want to take steriods, But, of course it wouldn't be a bad idea to take predisone for a short period of time to calm down the inflammation. So you can back on your feet again. best wishes

 

[atvman18]

Guys I've tried a few different steroids. I haven't had any luck. I'm currently looking into IBS because that could be an explanation for why my markers went down on Humira but my symptoms didn't dissipate.. Thanks for the suggestions though

 

[vickyhunter]

I know how you feel, I'm 19 too and feel the same way about Crohn's sometimes (frustrated, sad etc), but I wouldn't dismiss it as IBS just yet seeing as you've had a diagnosis of Crohn's. There are people on this forum desperate for a diagnosis and docs aren't just giving out a crohn's diagnosis to just anyone, so don't get disheartened. I know it's really really hard though.

What steroids have you been on and what dose? if you don't mind me asking - sorry if I'm being nosy haha.

and also in my post before about immunosuppresents did you say you had been on them or just heard of them?

xxxxxx

 

[atvman18]

steroids..it was last year so i don't remember the name but I took like 2 pills twice a day. I just got off of Humira..my symptoms have never changed throughout this whole ordeal which really sucks but ill survive..thanks for your interest Vicky ..im David btw

 

[xoxava]

Hello and welcome! I'm sorry you have had a rough time, I'm 20 years old and Ive also had my own rollercoaster ride. I took Asacol 9 pills a day and prednisone 80mg for awhile and nothing worked. I have had 8 colonoscopies since my diagnosis in june 2010. My doctor started me on remicade in April and it was AMAZING. I had fewer bathroom trips, I could eat, etc. Then in july it lost all affects even on a double dose, but it truly works wonders for some!! Ive been on here and done a lot of researching. My doctor doesnt want to try me on anything else and just tells me he doesnt know what to do for me. So having a good doctor is definitely a must. As for Asacol I do believe (could be wrong) that it is based strictly for the colon. Do you know where your Crohn's is located?

As as for the gluten free diet, I feel you there!! I started as soon as I got my diagnosis with gluten free and dairy free. It's so hard not to give in to food, but everytime I do I certainly pay for it. Maybe one day I will learn my lesson.. haha

 

[Pat]

Hey David

I'm in the same boat. I'm 22 and went through the whole "my life sucks cuz I'm at college and feel like hell" thing. I know this is so terribly easy to say and hard to do but-

The single most beneficial thing that I've been able to do for my Crohn's symptoms is to de-stress. When I'm on medication, when I've been off of it, when I eat badly, when I eat healthily... none of it mattered if I was stressed out. Break ups with girlfriends- automatic flare-ups. College finals- flare-ups. Out jogging or riding a bike or hiking- I feel tremendous. All the symptoms vanish. That's not to say they don't come back when I'm not feeling all euphoric and such, but at least it's a start.

Happier people are generally healthier people. I know it's corny and whatever, but in this case, it helps me more than my Asacol or cortico-steroids I'm on. Was waiting all summer to find a job and had a miserably painful summer with cramping and bloating and upset stomach. I swear, the day I got the job and felt the relief, my symptoms subsided.

Honestly, try some yoga or meditation or hiking in nature. There might be some truth to the holistic approach =)

Pat

 

[atvman18]

Hey Pat,

I actually think you make a very valid point. I have a whole lot of stress in my life. I'm not exactly that great at coping with it at all sometimes, but i completely agree with you. I find myself having flareups every single morning and sometimes all day but I do notice that most of the time i'm very stressed. Maybe from the actual crohns itself, but sometimes its hard to take time to relax, especially when i have the constant pressures of school work and family on my plate. Thanks for your input, much appreciated!

 

[EmAitch88]

hey, David!! i'm sorry you've had to deal with all these digestive issues/diseases since you were ten.....people don't always get dealt a great hand. i'm also on Asacol, two pills twice a day. and Azathioprine, three pills once a day. been on them for about a year and a half. things have been going okay for me (knock on wood).

the whole stress thing seems to be true with me as well. we need to remember that! go get a massage after a bad week, go for long walks/bike rides, a swim....i'm gonna try to get into yoga, too.

i hope you find the right med(s)/exercise(s)/diet/whatever you need to get better!! -SOON!

 

[Tesscorm]

Hi David, just another suggestion for you...

My son, 17 years, was diagnosed in May. His treatment has been enteral diet (nutritional formula). First six weeks was the formula only, he then reintroduced foods and continues with the formula at 1/2 dose, 5 nights per week (he takes it through an NG tube but there are drinkable versions available).

Studies have shown that the enteral therapy is as successful at inducing remission as are steroids. Although, I believe, most of the studies relate to 'children', my son is only 2 years younger than you... And, I'm sure that I've read of a number of adult members who have used this treatment as well.

My son has responded well to the treatment. Can't hurt to ask about it. If you search enteral diets or elemental diets, you will find additional info (if you have any questions, feel free to ask).

Good luck!!!