I have been battling Ulcerative Colitis/Crohns disease for the past 19 years.  It has always been a struggle to be “normal”.  I used to hide my illness from everyone out of shame and embarrassment, until I had no other choice but to share.  Even though I don’t look like I am sick the pain and bleeding that I experience due to being chronically ill is very stressful and makes it difficult to get out of bed most days.   Fortunately,  I was able to manage working full time while also going to college full time, to be able to afford my bills and medical expenses, even though I struggled with my health. But after I graduated from college I went in to the biggest flare I have ever had, which continued and has yet to be able to get under control.  I have required several blood transfusions and in February of 2014, I was diagnosed with a life threatening infection called cdiff.  I could not have imaged how horrible this infection would become for me.  I have continued to be in the hospital for up to 3 weeks at a time,  and used to return to work within a couple of days until I literally no longer had the strength to do so.  

Crohn’s disease causes my body to attack itself throughout my digestive system and form ulcers all the way from my mouth, to my intestines.   The ulcers are incredibly painful and bleed.  Crohn’s disease also causes extreme fatigue, joint pain, migraines and many other health issues.  Having cdiff is like throwing gas on the fire, as it is an infection in the intestines.  Cdiff is much like having severe food poisoning and causes bleeding and the layers of the intestines to be sloughed off in layers, which causes thinning of the intestines.  I initially had cdiff 16 times, which completely destroyed my intestines and was finally able to get in to a clinical trial in May of 2015.  The clinical trial helped me to not have cdiff for a year before returning but during that time I still had to have surgery to have my entire large intestine removed due to how damaged it was.  My colon was full of scar tissue, completely thinned and also had cancerous cells.  The surgical removal of my large intestine left me with an ostomy bag for 13 months, which is pretty miserable for anyone, especially a 24 year old girl.  During this time, I contracted another very serious virus called Cytomegalovirus colitis, which is another illness that attacks the intestines and is also very dangerous. Cytomegalovirus causes major bleeding, fevers, vomiting, excruciating  pain and dehydration.  The meds prescribed for this virus did not work for me and I couldn’t get rid of it for a 10 months. I finally had my ostomy bag reversed, and my own gut flora helped to heal the virus.  

Unfortunately, after my second bowel surgery, in which my ostomy bag was reversed, I started to contract cdiff again and consequently  cyglomeglovirus returned, and has come back 4 times now.  I have had both the cdiff and cyglomeglovirus several times since my surgery and have also been battling a severe Crohn’s disease flare, which has yet to get under control.  All 3 of these illnesses involve my intestines and can be   life threatening, along with being very painful and causing chronic fatigue syndrome, not to mention the damage that all of the medications and steroid treatments have done to my body as a whole.  My body continues to struggle with staying hydrated and I lose a lot of blood and blood clots on a daily basis. I have been in and out of the hospital for a total of at least 10 days out of each month for the past year and a half and am currently in the hospital battling both cyglomeglovirus and Cdiff,  which is an incredibly combination painful for me.  If I cannot get any of these illnesses under control, I will continue to deteriorate. I already have difficulty with getting out of bed most days, due to how weak my body has become and the chronic pain I experience.  When my body is finally trying to recover from one thing, I get hit with another wave of other illnesses; over and over again. 

The medications for cdiff are over $3,000 per course and cytomegalovirus are even more expensive, at $6,000 a course for the 4 weeks I require.  I have lost everything, including my ability to be able to work, and need help to be able to afford proper healthcare in order to get well and be able to live again and get my Crohn’s disease in to remission!  Entyvio alone (( which is an infusion medication required for my Crohn’s disease)) is $18,000 a month, for which I have to pay a 20% coinsurance upfront.  I also require a port surgery because I no longer have viable veins for IVs.  I have had to have specialists use ultrasound machines to find place PICCLines, but even those are becoming difficult to place because my deeper veins are full of scar tissue. Also, PICclines carry a much greater risk for blood infections because they go directly to the heart.  Since I no longer have viable veins for IVs or PICCLines, which I need in order to receive proper IV medications, fluids and life saving blood transfusions—I need to have a surgery to place a port, which also very costly. 

I hate to ask for help from people in general, especially from a financial standpoint, and have struggled with this for a while now.  Fortunately, I have been able to get help from financial assistance programs for my cdiff medication the past couple of times that I have had it, but still need to be able to afford my other medications and surgeries.  ((I also have a painful bladder disease, for which I had surgery in May and require another surgery)) If I am unable to afford the medications needed, I will have to remain in the hospital to finish the medications, If they allow me to stay and don’t discharge me, or go without the meds which could be very dangerous.  I will have to have another surgery to remove more of my intestines, have an ostomy bag again ((possibly permanently)) and continue to have a very low quality of life.  All of this and the surgery would not even cure me of these ailements and my life would continue to be in danger. 

I continue to fight, but it’s becoming more and more difficult to do so.  The financial burden of being ill is unimaginable and it’s even more tragic how unaffordable having these illnesses is ((especially in the US)).  I hope to be able to get well and continue to spread awareness about these illnesses in hopes to find cures.  Thank you for reading this lengthily ((novel like)) story of mine and thank you in advance for any contributions you are able to make!