GleepGlorp
Sorry, you have been having such a hard time. I hope you are doing better on Stelera.
You remind me a lot of my younger sister. She was diagnosed with Crohn's at 15, but looking back, we think she actually first got it at about 13. We just didn't recognize her early symptoms, skin and hair problems, eye issues, weight loss. We just assumed any changes that were occurring were normal puberty. It wasn't until she started to get sick to her stomach that we realized anything was wrong, and even then, it was months before anyone realized she wasn't just getting bad cases of the flu or a nasty bug. We were pretty lucky, though, compared to other stories I've read because it only took us about 4 months to get a diagnosis once we realized something was going on.
Then the fun started. She actually has a pretty rare form of Crohn's. I was told that less than 3% of people with Crohn's have it like she does. We spent almost 4 years trying to find someone who knew how to treat her. We were in and out of the children's hospital, and she was on more medication than I can count, and each doctor kept telling us to find someone else because they had never seen a case like hers before and weren't qualified to treat her. In my experience, most of the GIs out there are not very familiar with Crohns beyond the basics, and the ones that are are used to dealing with mild to moderate cases, not severe ones. Even at the children's hospital there was a lot of misinformation being spread around from the doctors.
Finally, it got so bad she was down to 80 lbs and so week she couldn't walk across the room. It was awful, and the doctors weren't offering any help. We were at the point of contacting the Mayo clinic when she was admitted to the children's hospital again. Because her case was so severe, they were able to get her into a specialized program at another hospital that is by referral only and takes only the most severe Crohn's and Colitis patients. It was like an answer to a prayer.
She now has a team of specialists who all specialize in Crohn's and UC. They are not regular GI doctors, and they only see the most severe Crohn's/UC patients, so they were prepared to deal with a complicated case like hers. The program also provides a nutritionist and a phycologist who both specialize in Crohn's/UC. It is amazing. From the first visit, I was like finally we are getting somewhere. These people actually know what they are talking about.
For instance, when we told the nutritionist about her issues with taking nutrient drinks like ensure, she immediately knew what was going on. This had been a long standing argument with all her old doctors who felt that forcing these drinks down her throat would solve all her problems. But no matter which brand she tried, she just couldn’t keep them down. They always made her violently ill. At first, we thought it was the high levels of sugar in these types of drinks as sugar is one of her triggers, but we tried the sugarless ones made for diabetics, and it didn’t make any difference. The nutritionist explained that there is a certain ingredient in all these drinks that some people are allergic to, and it will make them very sick. It was such a relief to hear someone else acknowledge that we weren’t crazy. She actually couldn’t physically take these things.
In the end, it took about 9 months to get her into remission with a combination of diet, regular drugs, IV supplements, and biologics. She’s been in remission since this past spring. She still takes half the pharmacy, but she is doing well right now, and we are hopeful it will last. For now, we are making every moment count and trying to make up for everything she missed out on these last few years.
So I guess my point is no matter how bad it gets, just don’t give up. Be your own advocate; look for a new doctor if you aren’t getting the help you need. It will get better eventually.
