My Crohn's Experience

[Op.28/18]

I was diagnosed with Crohn’s several years ago. I didn't know anything about Crohn's or UC; had never heard of either. So when I was diagnosed with Crohn's, something I'd never heard of, and my doctor in the hospital, a doctor whose medical interests supposedly are adolescents and chronic disease, told me I'd be back to normal in a few weeks, I believed her.

Having been told, I’d be back to normal in a few weeks, I thought I'd take the drugs I was given and be done with Crohn's in a few weeks; I wasn't told anything about it; I didn't know it was an incurable disease I'd have the rest of my life, barring a cure. My doctor, Anne L. Sullivan, acted like it wasn’t serious at all, like it was just barely worse than a headache.

I also wasn’t told anything about the drugs I was given. When I asked if the drugs had side effects, I was told “oh, no, don’t worry about side effects.”

(If Crohn’s really is such an insignificant disease, why give a patient, particularly a young patient, drugs with the potential of causing multiple types of cancer (Imuran whose risk of cancer, btw, I’ve read seems to be higher among teens and young adults), diabetes (prednisone), high blood pressure (prednisone) suicidal depression (prednisone), bipolar disorder (prednisone), psychosis (prednisone), osteoporosis (prednisone again), ruptured tendons (Cipro, especially when used in combination with prednisone), HPA-axis suppression and other thyroid issues (prednisone), etc., etc., among other serious, life-changing side effects?)

A few weeks after I was hospitalized and diagnosed, my symptoms were getting worse and worse—most likely because my doctors in the hospital, even though they continually told me "diet doesn't matter," they also advised me to eat ice cream due to its "softness." That my symptoms were getting worse, that was a surprise because the doctors in the hospital acted like Crohn's was a minor ailment, something that the drugs would take care of and I'd be done with it forever.

So my mom called the hospital. A nurse relayed to a doctor what was going on. The doctor couldn't be bothered to speak with me, but did, apparently, tell the nurse I probably had toxic megacolon; she said I needed to see this doctor either the next morning, because I would probably die if I didn't. So we woke up 3 AM and drove five hours to Iowa City, to see this doctor at the University of Iowa Hospital and Clinics.

I ended up not having toxic megacolon. No tests were taken. The doctor decided this just by talking to me. So if the doctor could’ve just bothered to speak with me, all of that worry could have been averted.

And at that point I still wasn't told much of anything about Crohn's, but at least, because I was told I was going to die, I knew it was serious.

What’s worse though is that I was put even more drugs—at even higher doses. And these drugs ruined my life.

Imuran carries a risk of skin cancer (and leukemia and lymphoma, among other things, risks that, according to the Mayo Clinic, might not go away for months or even years after stopping the drug*) and a tumor developed on my face; had to have it removed; now I have a large scar on my face.

Prednisone can give you cystic acne; that’s what it did to me. I always had clear skin. Now, besides that scar from the Imuran-induced tumor—I have acne scars all over my face as well. Now my skin looks terrible and I have no self-esteem whatsoever.

Before the cystic acne had left scars on my face, I had repeatedly asked my doctor for a prescription for this cystic acne or a referral to a dermatologist—because OTC acne products weren’t working—and I was only told it would go away on its own and not to worry about it.

Well, it didn’t, and now I’ll always have scars on my face—for nothing, for a drug that didn’t even induce remission or even come close to it.

* http://www.mayoclinic.com/health/crohns-disease/DS00104/DSECTION=lifestyle-and-home-remedies

 

[mrs. vr]

Your story made me so sad and angry FOR you. Adolescence is difficult enough, without having to cope with a chronic illness and side effects as well. It's not right or fair that your doctors weren't completely honest with you. (I assume they weren't with your mom, either?) If they didn't completely inform your parent of the risks/benefits of whatever meds they were putting you on, how could they give informed consent? If it were me or my child I think I would be asking a lot of hard questions of the medical establishment you dealt with.

On the other hand, sometimes it's better to look forward rather than backwards. Especially at a younger age. It would be so easy to become an angry bitter person, but is that how you want to live? (I know it's easier to sit here and say it than it is to do it, I really do understand that).

Are you currently being treated by a doctor you have a better relationship with? I wasn't sure if you were implying that you are only using natural remedies at this point (your link), or if you're still under a doctor's care.

If you don't have a doctor you feel comfortable with, you have the right to find another.

I don't know if you're a male or a female, but either way, they are making better cosmetics all the time to cover scars.

I hope the best for you, and that you are able to come to a more peaceful place in your life.

 

[ladyB]

Hi!
Here's hoping that things will be looking up for you

 

[Crohns08]

I'm sorry what happened to you, yesterday I was at a children's clinic for a second opinion, and they were thinking of putting me on Imuran or 6mp. Obviously they told us the risks of cancer, prednisone wasn't an option my father is willing to take because of all the side effects. (Especially after seeing what it did to my dog when he was sick) So, no Imuran or 6mp for me, for now, my father is trying to get me into a LDN study so I can try that. I'm currently on Pentasa and Prilosec. If that falls through, I will be started on Entocort.

Have you tried Pro active? I believe that's what it's called. It's a product that reduces scars and acne, just a thought if you haven't tried it.

 

[Op.28/18]

hey, thanks for the replies.

No, I don't go to a doctor anymore; I don't really see the point; my life has only been made worse by doctors. I don't trust them; I regret ever having trusted them. I'd be much better off had I never gone to a doctor. It's the biggest regret of my life.

Yeah, I agree, it's better to look forward than backwards, but that, in this case, is a very difficult thing to do; my life has changed completely, for no reason at all, just because my doctor couldn't be bothered to to do her job. She was actually watching TV at some points when I was asking questions, just absurd.

(My sister had a friend there, in the hospital, and he needed the TV on; I wasn't even watching it. I was in too much pain.)

Crohns08, your dogs look pretty cool; I didn't know they gave prednisone to dogs; and if it even makes dogs feel terrible, maybe doctors should think twice about giving it to people.

I think it's wise that you're avoiding taking Imuran so soon; I wish I had never been put on it; that's what gave me a tumor on my face that had to be removed, leaving a large surgical scar on my face. I've tried some acne products, but they don't really help much with scars, unfortunately.

Since you were just diagnosed in September, you might not've heard of probiotics; they're worth checking out, in my opinion; they really helped me--much more than high doses of prednisone, imuran, asacol, flagyl, cipro, vicodin (I was put on that when I was diagnosed, too), and all the rest.

 

[Crohns08]

Thanks, Op.28/18.

Yep, they gave pred to the older boy in my avatar because he had immune system problems. He had a huge flare up from vaccinations. His immune system is fine now though, and he's healthy as a horse!

I have heard of probiotics, and I'm trying to get a yogurt maker so I can get them through the yogurt. I can't have any probiotics with yeast in them. Yeast upsets me. So, not only do I have to look for probiotics, I have to look for vitamins without the yeast as well.

I understand about not trusting doctors. If we had completely trusted my Dad's surgeon when he was ill who wanted to pull something out they thought he didn't need, my Dad might not be here now. What my Dad did was extensive reading on what he thought he had, and he proposed his thoughts to him. One of his doctors told him he sounded like a first year med student. So, read up on everything you can about Crohn's disease! My Dad has done extensive reading on it for me too.

I'm curious, are you on a regular diet? Have you changed anything at all?

 

[Op.28/18]

Yeah, I'm on a pretty strict diet--besides trace amounts found in various foods--a gram here, a gram there--I don't eat any sugar. If I wasn't on this diet, I'd pretty much always be in pain.

Sounds like a pretty bad surgeon--I hope everything worked out.

 

[Crohns08]

Yeah, everything worked out, he got better from reading he did on his own, and self diagnosed himself, and the doctors ended up agreeing with his self diagnosis. He got better, and now he's healthier than he's ever been! He walks my two dogs in my avatar 1.5 miles a day in the mornings. He used to walk them seperate at three miles a day, 1.5 miles each dog.