new to crohn's and concerned about medication side affects

Hello to all, here's my story, I don't really know where to begin so here goes. My son has been recently diagnosed with crohn's, he is 16. His symptoms started in July with a fever the week we were at the beach, he would then get a fever every other week or so for the next couple months, then in October it became more frequent like every few days, he also had bad smelling gas during this time and stomach cramps on and off. We took him to the doctor at various times throughout that time period, it wasn't until Nov that they decided to send him to a GI doctor. He's had, stool samples taken (no blood or bacteria found to be present in the stool), blood tests where he was found to be anemic and low albumen, 2 CT scans showing enlarged small bowels and lymph nodes in the abdominal area, colonoscopy showing only minor irritation in the intestines (so minor the doc doing the scope, a different doc than he was seeing, wrote on the exam it was a normal colonoscopy), endoctomy showing minor stomach irritation.

With this they're saying it is crohn's because of his malabsorption and mild irritation and his fevers. They're saying we caught it early. The doctor wants to put my son on one of the biologic meds, either humira, cizmia, or remicade. After doing some research I am so confused and don't know what to do. The side affects of putting a teenager on one of these meds (lymphoma, cancer, etc) is very scary and I'm not quite sure worth the risk in our case since his symptoms are relatively mild at this point compared to others that are on these meds that I have read about. I read somewhere that the treatments for crohn's start out with the most mild meds then you "step-up" as needed?

Any advice would be greatly appreciated, if you need more info just ask, I'm sure there are things I have left out or forgot as I am writing this in a stressed out state, thanks.

Also, my son is athletic, a very promising ice hockey player and was planning on playing at the collegiate level, 6'1", 165 lbs and gaining weight, has a big appetite, he just eats whatever and deals with the cramps as they come, he doesn't get diarrhea very often.

Different doctors have different attitudes about treatment modalities. My doctors have all been very conservative with meds, so I've taken a version of 5-ASA since I was diagnosed, plus occasional and brief episodes of steroids. My disease is considered mild, and I'm not an athletic teenager, but there have been arthritic changes in my spine and pelvis that have made a significant negative impact to my lifestyle - I cannot run or jog anymore. My rheumatologist (I started seeing one about 5 years ago when the joint pain was more detrimental than the bowel symptoms) has repeatedly recommended biologics. My GI(s) have repeatedly said no.

It is worth getting a 2nd opinion for your son since his illness seems to be fairly managable right now. But the plain truth is that he will likely need to take medicine for a long time, it will sometimes get complicated, and there are other things this autoimmune disease can do to you besides give you smelly gas and a fever.

I'm sorry you and your son have had to go through this and I hope he does well on whatever medical treatment plan you choose. I hope you will continue to post here with your questions and comments!

Hi atomicpunk- I'm 27 now but first started having CD problems when I was 18 (didn't know what it was at the time). I went through this trial and error medication process while going to school. After finally getting the correct diagnosis (after many misses), the doctors started me on the Pentasa pill regime when I was 22. They slowly over time added the "heavier" drugs in the treatment array one by one when it became apparent the milder ones were not working. After ruling out Pentasa (the aspirin for your intestines), 6MP (the mild chemo pill), Entocort (the mild steroid), and high doses of Prednisone (the steroid from hell), they put me on remicade which seems to have done the trick. I have been in remission and out of the hospital for 3 years now!

I know everybody’s journey will be different, but here are some of my experiences with CD medication and school:

In my personal experience, I found it very difficult to be on the steroid drugs during school. They made it very hard to focus. Depending how high they dose was (at times up to 60 mg), I was literally experiencing roid rage while trying to prepare for finals.

Remicade, in my case, turned out to be the bazooka drug. It put the crohn’s in check and turned my life around. I used to have horrible problems with anemia and blood loss (led to multiple blood transfusions). After a year of being on Remicade, I was healthy enough to go on to grad school and even do fieldwork up in the Arctic. Sometimes I get tired immediately after getting the infusion, but it does not prevent me from being athletic. In fact, I actually started running ½ marathons a couple of years ago.

That being said, there have been draw backs to being on remicade. Remicade is not one of those drugs you can nonchalantly start and stop. It is usually administered at locations with 9-5 business hours, which for me means I will permanently have to burn a third of my paid time off from work every year to get my infusions.

Plus, it can get expensive. I had to give up my PhD fellowship and go into the career field earlier than expected because I could not make ends meet with the limited student health insurance offered by the university. Even today I find myself extremely nervous about health insurance. I have a really good job with pretty good health insurance, but have had copays and percentages go up on me this past year due what’s going on in politics. I get a rather high dose (10 mg/kg). The cost of the medicine alone for me for 1 infusion session is just under $10,000. Small changes to percentages in patient financial responsibility can mean a lot when those percentages are being applied to big numbers. I have had to turn down good career opportunities because of healthcare benifits. This would not have been the case if I were still on the cheaper drugs.

Also, I have recently been diagnosed with a mild case of pustular-psoriasis on my scalp and knees. Although there is no conclusive evidence on what causes this rare condition, there have been reports that it may be tied to Remicade usage.

Even with the negatives to taking Remicade though, I am very happy I was put on this drug. I empathize with what you’re feeling about the risks. In fact, the place I get my infusions from actually made me sign a waiver that I won’t sue them if for some reason I am one of the unlucky people that get hit with one of the risk factors (not sure if this is standard or not). For me though, it was worth it. When I was decided whether or not to make the jump to IV infusions, I figured it was better to feel alive, alert, happy and healthy for a short time compared to tired, miserable, sickly and depressed for a long time.

I hope your son gets the help he needs. There is hope!

just a note of encouragement atomic, I was hose jockey for 18 years with crohns, no tougher sport than that one on ones body. 1 resection during career and 1 huge one right after I started, that hung me up for ayear until dr's removed obstruction, then 8 weeks after big removal I was back at the track riding

My daughter was finally correctly diagnosed when she was 18, in 2006. We found that the modified version of SCD diet ("modified" in this case means cheating by eating potatoes and rice: based on our experience I do NOT recommend - better to stick to strict SCD) combined with Entocort, a steroid that is released mainly in the intestine, so not as much of it gets into the bloodstream, resulting in far less side effects than prednisone.

We were shocked to see her stricture disappear just with the Entocort and diet. No symptoms but her labs and a colonoscopy showed very mild inflammation. So she introduced LDN, which combined with just one pill of Entocort and the modified SCD, brought her labs to the normal range. She used the LDN to successfully taper off Entocort (previously, she had landed in the hospital when tapering) and then, for a year, enjoyed the best health of her life - not even a sniffle. When she tapered off LDN, within two weeks she got a very bad cold lasting three weeks. And her symptoms came back. Also, the LDN, combined with modified SCD but without Entocort, did NOT bring her labs to the normal range.

Right now, she is slowly tapering off Entocort, and will try Pentasa for the first time and/or LDN again. This time, with strict SCD. 

So far, we have not regreted the decision to forgo the more toxic meds. When she had mono and her spleen was enlarged, we were glad her body didn't have to deal with the virus AND toxic meds.

Right now, she is battling a bacterial skin infection caused by one of the "bad bugs," so I'm still thankful she's not on a heavy immunosuppresant, which could have turned this into a far more serious situation.

More info on SCD here: www.breakingtheviciouscycle.info

More info on LDN here: http://www.ncbi.nlm.nih.gov/pubmed/17222320