SKH Note: I met Stashia via Twitter. If I could wrap her up and bring her to the Gutsy household to help her, I would in a heartbeat. She is a lovable Gutsy girl. Stashia blogs via Chrons Disease, Ulcerative Colitis & Medications. Please note that my stance on drugs and medications in relation to healing IBS and IBD will never change. I chose to feature Stashia because I think it’s important for Gutsy women to be presented with the facts all around. Stashia gives a great testimonial for what life with all these drugs and medications is like. I pray for her daily, too.
For me, Crohn’s brings on many different symptoms and ailments along with it. The biggest issue I have, almost non-stop, is abdominal pain. The pain is worsened after eating and drinking; and almost never subsides. It is generally located in my lower abdominal area, to my right side. There have been times when the pain has been so bad that all I could do was curl into a ball and lie on my bed, until it eased up enough for me to drive to the ER. Even after getting to the ER, and having tests done, nothing ever came back to show why I was having such significant pain. Unfortunately, having many tests, with the results coming back completely normal, seems to be a common thing for me over the last couple of years.
Another big issue that puts a hold on a lot of daily things for me is my extreme fatigue. This may not just be caused from the Crohn’s, but it is definitely playing a huge part. My fatigue is so bad that it takes a lot for me to just get up and go to the store, and sometimes even to walk from my room to the bathroom.
When I was first diagnosed with Crohn’s in 2010, I was 17 years old. I had just graduated from high school. I ended up having to quit my jobs, and withdraw from college, because I couldn’t get out of bed due to all the pain. As of today, I still have not been able to resume my normal lifestyle. My daily routine now consists of waking up, grabbing a very SMALL breakfast (which normally ends up being my last meal until about 6:00 or 7:00 pm that evening), showering, and lying around the house. I do, occasionally, muster up enough energy to drive down the street to my best friend’s house to have movie nights with her. Other than that, she and my boyfriend (who come to see me most of the time now) are basically my only form of social life outside of my home.
Aside from the fatigue and abdominal pain, there are other minor issues that I experience. I have occasional constipation/diarrhea. Fortunately, the diarrhea symptom is less frequent than the constipation. Oddly, I do get constipation that is so severe that I am impacted.
After being diagnosed with Crohn’s and Ulcerative Colitis, my pediatric GI doctor put me on a series of medications. First, they started me on Asacol (2 twice a day). Then they added Entocort (6mg, once a day). After the doctor realized that the Asacol was not working, he put me on Pentasa (3 x twice a day), along with the Entocort, which increased to 9mg a day and still did not work. My doctor then switched me to Apriso (4 x 0.375 twice a day) with Prednisone added. Yes, Prednisone does make you gain weight, gives you chipmunk cheeks, and a distended belly. After taking all of these different medications, I still had not gotten close to remission.
My doctor decided to put me on Remicade (every 6 weeks) with Methotrexate injections (once every week). Learning to give myself shots every week was incredibly bothersome and after taking the Methotrexate shots, I would feel like I had the flu for three days. I switched to an adult GI doctor recently. He has put me back on the Pentasa, twice a day, with Entocort.
This is where I am at currently, minus the Methotrexate. I am still not in remission, after almost four years.
I would be telling a huge, bold-faced lie if I said that still being sick and going through the same pain and suffering, if not more than when I first was diagnosed, doesn’t bring me down at times because it one hundred percent does! There are some days where everything catches up to me and I get a little frustrated with my situation, but it always passes. My mother always tells me when I am down about my health, that even though I’m sick and not feeling well now, it won’t always be this way.
I know that my life is going exactly how God planned it to go, health problems and all.
So how do I deal with all of this at the end of the day? I pray. I pray about it and have faith every single day that I will be healed completely one day. That gets me by. I know that right now I am suffering, but I also know it won’t always be like this.
I read this verse and it gives me a little extra boost of encouragement when I need it:
“The pain you have been dealing with now is nothing compared to the joy to come.” Romans 8:18.
In addition to prayer, the next best thing I do in dealing with illness is talk about it with someone. Whether you talk to friends, a psychiatrist, relatives, or you just write in your journal, it will help tremendously. I normally talk about everything with my mom. Without my mom’s support and love, I don’t know what I would do. She has been there for me to unload on and complain to. She’s been the one taking off from work to take me to the hospitals, and back and forth to doctors’ visits. Having family and friends for support really makes a difference in everything. Keeping things bottled up can be a large source of stomach pain for Crohn’s patients. Crohn’s is, after all, a stress-induced illness, so eliminating any unnecessary stress is advised if possible. Try to engage in light exercise like walking or yoga, it helps as well; and that’s what I try to do often.
It has definitely been quite the long and difficult journey that is still nowhere near being completed. No doubt, it has made me a lot stronger. I know things could always be worse.
I am just thankful to be alive every day.
Love your guts,
SKH
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