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Things are finally good. Might make you feel better to read.

If some of you are really struggling this may be some good news for you to hear. I am a male diagnosed at age 16. This was very hard for me as I wanted to drink and party with my friends especially in college and I was able to do so at times. I started on methotrexate which failed after 2 years. Then I went to Remicade for a few years and I had almost no success with that as I would consistently have symptoms but controlled the majority of my symptoms with 10mg of prednisone a day. (not good for bones or kidneys) After Remicade, I tried Humira which was painful and I failed almost that almost immediately. Then I switched to Entyvio which I did have success with for a period of time but finally did fail as my rectum become inflamed. My doctor told me that Entyvio can sometimes fail in the rectum.

THIS IS WHEN THINGS GOT VERY BAD!

I finally had to be hospitalized as I had lost much weight and became anemic for bleeding. I even had to be put in intermediate care for a week and be in the hospital's sepsis protocol taking vancomycin. This part was easy what happened afterward was I developed perianal disease. I had huge skin tags on my butthole and couldn't even sit down. These became so inflamed that I couldn't even sit down. I was in chronic pain for months. I could only sleep 2-3 hours a night due to the pain. Looking back I can't even imagine I went through this. The only times I could find pain relief was when I used hydrocortisone suppositories which hurt going in but once in helped. I was prescribed opioids but those just made me foggy and didn't really help with the pain. (they are fun to take but were not helping with the bigger issue.

THIS IS WHEN THINGS GOT BETTER!

I was referred to a surgeon. His name is Dr. Ren Yu Zhang. He's a colorectal surgeon in Las Vegas. This man saved my life. He gave me his personal phone number and really took the time to talk to me about my disease. He's extremely personable and knowledgeable about what he does. He helped to get me on Stelara but understood that there were some bigger issues at hand. I had to have minor surgery to have the skin tags around my anus removed. Upon doing this he noticed tons of inflammation and explained to me if things don't turn around I will be going to the bathroom in a bag for the rest of my life. He explained that the only way to heal was going to be from prednisone. So I started off on 60mg of pred a day and started doing hydrocortisone enemas daily (not the most fun but they are lifesavers) This was a lot. My skin exploded with acne, my face blew up like a balloon and I went from weighing 136 to weighing 185. (Gaining this weight was actually a good thing as I'm 5'9" probably not the best for my heart to put on that much weight that quickly but there were bigger issues at hand.) Besides just prednisone, Dr. Zhang talked to me about switching my diet. We decided it would be best to switch to a FODMAP diet.

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the idea behind fodmap is to eat foods that are easy on your large intestine and do most of their digesting in the small intestine. I've been following this are trying to add tons of prebiotics to my diet. (I'm doing this from bananas, blueberries, SWEET POTATOES, and capsule supplements) In order for prebiotics like align to work you need a good ecosystem for the bacteria to thrive.

NOW.

I was on a ton of prednisone for months and had been on low doses for years which means that my body had naturally stopped making cortisol. (This is called adrenal fatigue) What you have to do is taper off the steroids very slowly. I also take these adrenal support supplements which actually help. After an incredibly slow taper, I'm finally on the lowest dose of pred I've been on in 5 years. I'm currently taking 6.5mg which is finally under the 7.5mg your body will naturally produce and not having symptoms of prednisone withdrawal which means my adrenals are starting to work again.

IN CONCLUSION.

Things might get very hard. I think I am very lucky. Sometimes when you don't have fight left you need others to fight for you. I was truly lucky to have my family and Dr. Zhang behind me. (No pun intended) There were times I wanted to give up. I really did but it was being surrounded by great people that kept me going. The key to beating this disease is being consistent. At first, you need to accept it which is not easy but once you do that the hardest part is over. I currently continue my FODMAP diet, the hydrocortisone enemas, and the Stelara because they are all working. Consistency is key. I've found if I'm good all week I can usually treat myself to a night of bad food and drinking because hey we are human and we deserve it.
 
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