I am looking for any shred of hope. I was diagnosed with Crohns when I was 32 years old. Everything about it was untypical. I did not have diarrhea. No bloody stools. The only symptom that I ever had was abdominal pain/spasms and constipation. When I was finally diagnosed (years later, after every test in the world) I was in complete denial because I never had any real Crohns symptoms or complications. After giving in and finally trying methotrexate, my pain went away in 4 weeks (the exact amount of time I was told that it would kick in) so I finally accepted that I might have Crohns. I haven't had any problems or flares since starting methotrexate over 6 years ago. I wish my story ended there. In March of 2014 my 14 year old son started having bloody stools. After colonoscopy/biopsies he was diagnosed with UC. I was obviously afraid it could be Crohns because I had it, but his paternal grandfather suffered with severe UC and none of the biopsies showed Crohns, so I thought maybe it was possible it was UC. All of the typical UC meds were tried and failed. He was receiving the highest possible dose of Remicade infusions every 4 weeks. For 8 months he was in constant pain, continued to have large amounts of blood in every stool, having 20+ stools per day, was losing weight, had no energy, suffered migraines from the Remicade, was in and out of the hospital, had multiple scopes, etc. His small bowel and ileum were never affected and none of the biopsies ever showed granulomas so they were pretty positive it was UC. I asked his docs if we could try methotrexate (prior to starting Remicade because Remicade scared me) because it worked so well for me, but they said methotrexate is not a good treatment for UC, and takes too long to kick in and just simply was not a good option, that Remicade was stronger and the better option. In December total colectomy w/ j-pouch was suggested. A cure. How wonderful? No more pain, no more sleepless nights in the bathroom, no more meds, no more hospital stays or missing school. No more IV's. No more migraines. No more tests/procedures. The thought of a cure was so exciting and promising. He had his first surgery in December. After pathology checked the entire colon and still found no Crohns we were ecstatic. The 3rd surgery was completed in May. He accepted his new scars and handled all 3 surgeries so well, all he wanted was to feel better. Over the last few months since the surgery, he failed to gain weight, he was losing weight. He had no appetite and would eat very minimal amounts of food. I kept taking him to his appointments and expressing concern to his MD's. They started him on Imodium, hoping that slowing down his number of stools would help with weight gain. He continued to have 10-15 BM's per day. On Sunday he began having abdominal pain and nausea. I took him to the ER and he was admitted and scheduled for an endo/pouchoscopy to see if he had pouchitis. Ok, pouchitis, we could handle that. On Tues he had the pouchoscopy, when they brought out the pictures of his pouch I was devastated to see ulcers. I wasn't prepared for what the doc said next..."this might be Crohns". They kept saying it might still be pouchitis, that sometimes there could be ulcers with pouchitis and that we wouldn't know until the biopsies came back. He also has inflammation in his stomach. On Weds he had a MRE to see if the small bowel was affected. We were told if the small bowel was affected that it was definitely Crohns. On Thurs the biopsies came back...the pathologist said he found granulomas...classic Crohns finding. The MRE determined the small bowel is still not affected (thank God). The pathologist said that the stomach biopsies looked like "the start of granulomas". He is down to 86 pounds and obviously malnourished. A feeding tube was put in and he is receiving enteral feedings. Of course my sons biggest fear at this point is permanent ileostomy. He is 15 years old. But my biggest fear is WILL HE BE OK? If Remicade and all of the other multiple medications didn't work for him before, what is going to happen now? What if no medication works? I need someone, anyone, to please tell me that my son is going to be ok. I know no one has a crystal ball, but I just need some ounce of hope. I have seen many stories on here of this happening to other people but they are all from a few years ago. Is there anyone out there currently with a j-pouch and Crohns doing well? Anyone? Right now there is no real plan. We are waiting to hear back from Dr. Shen at Cleveland Clinic to see if he will see my son. He is currently on Flagyl, tube feeds and had his 1st methotrexate shot on Friday. (yes...he is NOW on methotrexate...3 surgeries later). I appreciate any advice from anyone who is going thru this. Thank you.
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