History and Living with Crohn’s Part 2 - Diagnosis and Life
Life since my diagnosis has been interesting. There have been some easy changes, along with some very difficult ones. There has been a hospitalization and some discoveries I made myself. This entry will be about my life since May 2023.
After I got my diagnosis it was about two weeks before I had my first infusion. The doctor's office called me to schedule and informed me of the process. I was to have 3 infusions in 2 months. This is a medicine that you have to front load and build up in your bloodstream. I was also informed that there are programs that the drug company has that will help to take care of your deductible. I would still be responsible for the copay still, but that is much better than roughly $330 per visit. I can't put into words how grateful I am for this.
Instructions were to arrive about 10 minutes before my appointment to fill out the first visit paperwork. Then while getting the infusion I would get my vitals taken 3 times in the first hour, and after that they could let the medicine flow faster to try and get me out in less than 2 hours total. I asked if the timeline was just for the first time or if it's like this everytime. To my chagrin, it's two hours every time. The medicine can only be given so fast. With travel time and the procedure it's a solid 3 hours of a day. Not bad but I do wish this could be a weekly or honestly a daily pill.
It was about three quarters of the way through the treatment when I started to notice a difference. I was a bit surprised as the Nurse told me it could take weeks to notice a difference. I was thinking it was like a placebo effect, but I did not feel the general pain I had in my gut. In fact, I had zero pain in my gut anymore. It had been so long that I hadn't had at least low level pain in my gut that I didn't even realize it hurt anymore. I definitely notice now.
After I left the Infusion center I sat in my car for a solid 30 minutes in a mild shock, or just disbelief. It had been over 10 years since I hadn't felt anything coming from my gut. No rumbles, no pain, no gas/bloating, nothing. The general discomfort had become my normal and I didn't know. This is my new normal and I don't want to lose it. I had been doing some research on Crohn’s diets and I had started before the treatment but now it was full on 100%, no cheating no anything that can traditionally cause inflammation.
I spoke with my Doctor and they suggested doing an elimination diet. Where I cut out everything that traditionally can cause inflammation in Crohn’s patients. That cut out a lot of things I enjoyed but honestly can very easily live without, and some things that would be more difficult. Example of an easy one was Corn. I did enjoy it but the kernel can cause inflammation. A More difficult one was Pizza, the dough and cheese are a no go. Another hard one was Soda. The loss of sugar and caffeine were very difficult to deal with. I cut out almost all sugar so the detox was pretty intense and for a few weeks I was Angry Adam.
After cutting out a lot of items for the first three infusions It was time to start and try to add some things back. First thing I tried was Hamburger meat. At this point I was 2 months into my treatment and I was craving red meat. I got a pound of Ground Round but it still sat like a lead pellet in my gut so it was a no go on red meat. A couple weeks later I got the idea to try Bison as it was said to be very similar to cow but since it is a different animal it could be different enough that my body could process it. I made a burger patty and tried it. Lo and behold it is different enough and my body can process it. So Red meat is back on the menu!
During all of my experimenting with foods I was going to the gym and really focusing on my overall health. I was exercising 3-5 times a week and counting my calories and getting a good fully rounded diet. From my average weight of 280 I made it down to 245-250 in about 3 months. When I hit that weight around mid August I was getting to the point of my Lifting program where my weight plateaued for about a month and it was time to start increasing the volume. I went from 1800 calories to 2500 calories. When you are eating clean and only just got used to that volume of food when eating clean that is a massive increase. I had a hard time with volume. My stomach was actually pretty small even though I was very overweight. I used to eat very calorie dense foods but not much volume. I was also drinking around 100-120 oz of liquids, mostly water.
After about 4 days of the increase in calories I started to get some intense bloating and cramping. I called the doctor and they told me to take some GasX and metamucil to help with the bloating and constipation. I dealt with it for about a month and I got to the point where I couldn't keep any food or water down, and after three days of that and not being able to take the cramping and bloating and had my mom take me to the ER to get looked at.
On the way to the ER I was so dehydrated that I started to not be able to use my fingers and moving in general became very difficult. When I was processed I was surprised I got my own room. They thought I could have had C-DIFF, Luckily I did not. I was given an IV with sugars and electrolytes to help with the dehydration and put on a liquid diet. I was also given steroids to help with the inflammation and some anti nausea and pain meds. In total I was in the hospital for 3 days. I had about 6 bags of IV and I tested negative for C-DIFF. The Doctors thought either my body created antibodies against the medication or my body burned through the meds faster than anticipated.
About a week after I left the Hospital I got some blood work done and I was on a very strong dose of Steroids. The tests were to find out if I created antibodies and to see what my residual level of medication was at on the last day before my next infusion. When I got the info back it showed, luckily, that my body had not created antibodies but my residual levels were slightly low. So we think that was the issue. Basically I did not have enough medicine in my body to help combat inflammation.
I was told to stay on steroids and start to taper off after my next infusion in September. My dose was pretty large at 30mg and every week taper down 5mg. After a few weeks I was down to 20mg and I started to get cramps again. I started to freak out a bit and called the doctor as I didn't want to be hospitalized again. They told me to go back up to 25mg as that was the last level I didn't have any issues.
Over that following weekend I did some thinking as my stomach wasn't calming down even at the 25mg. When I was in the hospital I took 6 IV bags. My diet was back down to 1800ish calories and my hydration was around 100 oz again. But most of my hydration was distilled water, and what got me back to normal I believe was the IV bags. So I tried out a hydration pack like a Liquid IV or Prime Hydration and I drank 3 of those along with some water and my stomach started to recover. I called the doctor the following monday and told them my discovery and they think I was right. My issue was dehydration not necessarily inflammation.
So I was told to keep up the hydration supplements and to restart to taper down the steroids. This was about 3 weeks ago. I am now down to 15mg and today is my 6th or 7th infusion. This round we are increasing the dosage since my residual level was low. And during all of this a side effect of steroids is weight gain. It causes you to be constantly hungry and retain water. So I went back up to about 250. I can't wait to get off the steroids and get back to a normal calorie deficit and not suffer. Also on steroids it made it very difficult to recover from the gym so I basically have not been to the gym in almost Four months.
So now that we are caught up I want to give a monthly update on my general health and how things are going with my Crohn’s and maybe even share some recipes and other info. I know this is another big info dump but this was the truncated version. I could probably write a book on my last 6 months.
Thank you for Reading! Please Comment and share. It helps a lot!
