Friday, June 20, 2014
So having Crohn's since December 2011 I thought I would publish a list of what I have learned over the years. This is only for educational purposes and is does not constitute medical advice.
1. Take your medications! (even if you feel fine)
2. Make sure you get sleep-research shows it predicts flares
3. Find a good gastroentrologist or internal medicine doctor (check to make sure they are board certified gastroenterology (here is a link to check)-usually doctors train first in internal medicine and then specialize in gastroenterology
4. When it is cold swim in cold water I have found this helps and do did this guy
5. When eating do what I call the greasy bag test-picture the food being placed in a bag and think of how much grease will it create and then think of the bag as a your digestive system
6. Work out and exercise when you are not tired
7. If you are having a flare make sure you see your doctor as soon as you can-waiting can cause more complications and problems
8. Don't get down-the last couple of years we have seen so many new drugs (with more to come) to treat Crohn's and ulcerative colitis-not to mention surgery for IBD has become less invasive over the years
9. Make sure you have insurance in case you have to get hospitalized and to cover any large expenses you may incur
10. Live life to your full potential and continue to fight Crohn's and educate others (even random strangers about it).
Friday, June 13, 2014
So I started Humira June 6, 2012 and really haven't looked back ever since. My first post on Humira was about 3 months after taking it here. I still remember feeling much better a week or so after. The worst probably time in my Crohn's timeline was in May of 2012 (my initial visit to the hospital wasn't too bad considering I had someone always monitoring me). I actually can still remember being up to 2 A.M. in the bathroom and actually vomiting. My GI had put me on Asacol when I was first diagnosed and Prednisone. However, the Prednisone was always a spare tire (and I think made my hair a little flatter even to this day). In retrospect I wish I would have started Humira earlier in my treatment plan.
The only thing that derailed my Humira treatment was my c diff which sucked (and I had to go to my internist to actually get fluids) and ended up getting a fecal transplant which luckily cured it. The only side effect I have noticed from the fecal transplant is that I am a little heavier than I usually am-and my thighs are a tad bigger. The one thing I learned about Humira is to make sure you hold in the Humira pen long enough to make sure you get the medication. If there is any fluid leaking then you are not holding it long enough and not getting 100% of your medicine!
If someone had told me I would have gone two years with very little pain I would have thought they were crazy. When I was first diagnosed with Crohn's I thought I would have a pain for the rest of my life. When I was initially diagnosed with Crohn's I did have some what I would call light depression (of dealing with a new disease). This study from 2013 showed that patients can go 4 years and more on Humira. This Japanese study showed that Humira was effective for long term use in patients with moderate to severe Crohn's. These days I am more positive given how much has changed (even since I was diagnosed) and new drugs continue to get developed. People always seem to come up with ideas and products that we haven't even thought of or could never imagined. Hopefully, the future will be bright with new discoveries and eventually a cure to a disease that impacts so many people and families.
Friday, June 6, 2014
So Wednesday night (June 5, 2014) I was working out at the local apartment workout center and after I did my work out I was coming off the elliptical machine and came down the wrong way and ended up on the ground in pain. I knew right away I had sprained my ankle. I was on the ground and then got up and was a little light headed. So I found the closest bench I could find and just took a rest there. I was able to get out of the work out room (actually in not much pain). I went back to my apartment and put some ice on it and did some research and saw raising the sprained foot also helps. The pain the first night I had the sprained ankle wasn't too bad. Although, I did wake up around 2 A.M. Thursday morning and felt like someone had stabbed my foot. On Thursday morning I could barely get out of bed. I called my mother and said I probably should go to the doctor. I then called my internist and he was on vacation so I was able to go to an emergency care center in town. The wait time was really quick as no one else was waiting. A nurse asked me what drugs I was taking, what hurt, and how it happened. A doctor came in and then said he would take x-rays. I was taken on a stretcher to get some x-rays done which didn't take long. The results were sent to a radiologist and the doctor came back with the results within a few minutes which was quite impressive.
This morning (June 6th, 2014) I woke up for work and actually felt pretty good. My ankle did have some pain and was bruised but was an improvement over yesterday. I am not back to normal and still have to walk slow but I should improve over the weekend.
The doctor wrapped up my foot and I was given crutches to take home (they a pain to use). I asked the doctor since I have Crohn's is it okay to take Tyenol and other NSAID (non-steroidal anti-inflammation drugs). So let me take you back to the fall of 2011 when I had Crohn's but actually didn't know I had it. I was in constant stomach pain all the time and must have taken multiple bottles of Tylenol Extra Strength which may perhaps made my condition worse. I still remember going to Walgreens to get some more Tylenol thinking how much of this stuff can I take? Growing up however I hardly ever used Tylenol or medications in general for pain. I called my gastroentrologist to ask if I could take Alieve. His office replied back within 15 minutes after asking him and he said it was okay to take. So I took Alieve and I did notice some cramping a little after. Tonight (June 6th, 2014-2 years to the day I started Humira) I did notice a loose bowel movement (however I did have chocolate ice cream which usually gives me the best chance of having a loose bowel movement). I take my Humira injection tomorrow night which should put me back on track.
This study from 1987 shows that 4 patients that had inflammatory bowel disease that were given nonsterodial anti-inflammatory drugs had prompt exacerbation of their disease. This meta analysis (a grouping of all the studies that have been done) showed in 2004 that some patients had a flare after taking NSAID drugs. I think there is no evidence one way or the other, however given I felt some cramping after taking Alieve I will try to stay away as much as I can from taking NSAIDs until I see data to prove otherwise.