My five year journey with this auto immune disease is just one of many stories you will hear but it is my story to tell which will be uncut, unedited and as truthful as I can be. The struggle is very real and this horrible disease has effected millions of people in different ways because it is unique and specific to the individual that is suffering. My journey started five years ago and it has been an ongoing battle that has taken a heavy toll on me physically, mentally and spiritually but I will not let this disease define me!!! However, it has refined me!!!! More about this later.
I was first diagnosed with ulcerative colitis at the end of 2014 after my first colonoscopy which showed mid to severe inflammation of the colon and rectum area. Several months previously after a CT Scan I had an abscess found on my sigmoid colon which led to several hospital stays and eventually surgery that removed part of my colon. The abscess was linked to active diverticulitis found in the colon during my first colonoscopy along with mid to severe ulcerative colitis found at the same time. It was determined the reason I got ulcerative colitis to begin with according to my first Gastroenterology is that in 2013-2014 I was on a lot of antibiotics for various infections which caused the bad bacteria to overtake the good bacteria causing severe inflammation in the colon and rectum area. According to one of my surgeons I was one of his only patients to have active diverticulitis and ulcerative colitis at the same time. He told me that he discussed my case with other doctors during training and they were amazed of how both of these were active in my colon at the same time. I write about this battle in an earlier blog entry so check it out (https://ravishingron39.wordpress.com/2015/03/10/ravishings-new-medical-battle-part-one/).
During 2015- to the end of 2017 I was treated by a good Gastroenterology, Dr. Derek Frederickson (https://www.healthgrades.com/physician/dr-derek-frederickson-2lm7l) who prescribed several different medicines, performed several colonoscopies, offered several natural remedies to help control my symptoms and checked on me while in the hospital for a non related issue but he was concerned about me which impressed me a lot. He encouraged me to loose weight, watch my diet and stay on top of my various medicines during this time which included: prednisone, mesalamine enemas, probiotics, turmeric and mesalamine (https://www.webmd.com/drugs/2/drug-6073-6146/mesalamine-oral/mesalamine-5-aminosalicylic-acid-extended-release-oral/details). During this time period the ulcerative colitis flared up several times so I was put on prednisone several times to control the flare up symptoms which included; rectal bleeding, many bowel movements with urgency, cramping, fatigue, tiredness and some dizziness. However, prednisone also has side effects which include: weight gain, round face, skin issues, breathing issues, irritability, insomnia, and many more negative side effects. Unfortunately, during this time I gained weight due to the prednisone but the prednisone seemed to control the many bad issues I was having during this time but prednisone is not a good long-term solution. During the end of 2017 Dr. Frederickson and I talked about using different medicines going forward so I could permanently get off prednisone. However, He told me he was leaving to start his own practice which was too far away for me so He had to recommend another Gastroenterology. So after two years with a Gastroenterology I could trust and depend on I had to look for another one but he recommended Dr. Winnie Szeto who was out of St. Elizabeth’s Hospital (https://video.search.yahoo.com/search/video;_ylt=AwrJ4NZxYD1fAYUAgvKJzbkF?p=dr+winnie+szeto&fr=crmas&fr2=p%3As%2Cv%3Ai%2Cm%3Apivot#id=1&vid=d57e63026ebcb3372c6f0ee6ca5e97f9&action=view).
Dr. Szeto performed a colonoscopy the fall of 2017 and I was diagnosed with severe inflamation in the colon and rectum which put me back on prednisone to control the symptoms. After several discussions she determined the best and safest treatment for me was to go on entyvio infusions since my other medicines were not working. So in January of 2018 we started the entyvio infusions which would be every 8 weeks. I would go to an infusion center and receive the medicine through an IV for about an hour each time after they give me Tylenol and benadryl to control any side effects from the entyvio infusion. At this point I would try anything because I was in a major ulcerative colitis flare up which gave me all kinds of health issues while starting a new job at the same time. I was cramping so bad, going to the bathroom about 12-15 times per day, feeling tired and fatigued along with having a sore rectum because all the times I had to go to the bathroom. I was working a new retail job while going through all of this and some days I wondered if I would make it because of the fear of having a bathroom accident or something else. Along with the physical pain comes the mental pain because your brain starts working in overdrive giving you the many fears that ulcerative colitis brings because of its nasty flare up issues.
From January to May of 2018 I was getting health coverage through the Massachusetts health connector because it was too expensive to go on my wife’s medical insurance. Unfortunately, because we were not poor enough so my deductible and plan was changed without any notice which caused a lapse in coverage so two entyvio infusions were not covered by insurance and i was billed over $32,000. To make a long story short I finally went full-time in May and got my own health coverage through my employer but I am still paying $25/month for this ridiculous bill. This happened while I was going through an ulcerative colitis flare up and the stress of insurance issues made things worse.
I continued on the entyvio infusions every 8 weeks right up to August of 2018 then I was dealt a major blow which landed me in the hospital for five days that sucked big time! Friday morning I woke up and had pain on my butt which prevented me from lying down and I had a fever over 101 making things worse. I was admitted in the hospital and they drained what they thought was an abscess just above my rectum. Possibly an extra hole that swelled up with puss that needed to be treated and drained. I had various tests, antibiotics, surgeons, doctors and Dr. Szeto trying to figure out why I got this possible abscess during my five day stay in the hospital that was driving me out of my mind. To make a long story short they determined it was an abscess and the wound had to be treated at a clinic for the next two months with a nurse changing the wound bandages because of the location right above my butt hole which is pretty embarrassing to say the least. Well unfortunately the wound did not heal much due to the prednisone but my surgeon at the time never said it was an abcess. I saw him two months later and he said it was an anal fistula from an MRI reading and that it would heal on its own and to stop any clinic treatment. He did not think the entyvio caused it but I decided not to get any more entyvio infusions for several months. Unbelievable!! I thought the entyvio could have caused this so I was pretty uncomfortable of going back on it in 2019 but Dr. Szeto and I decided to restart the entyvio infusions in January because I needed relief from my ulcerative colitis flare up.
In 2019 I went back on entyvio infusions every 8 weeks and then I went on another round of prednisone in April to help some of my many symptoms. I was going to the bathroom multiple times throughout the day while having cramping and feeling exhausted while working but made it through each day barely. When I got home I would crash and burn from exhaustion, fatigue and deal with the side effects from the prednisone. Dr. Szeto sent a letter to my employer about my ulcerative colitis issues asking them to be patient during times of flare up which was a great thing for her to do. My fellow co-workers have been so understanding and patient because they knew I had some issues but I would try like hell to work each day the best I could in-spite of how I felt. I put on the happy face and raced to the bathroom when needed or took Tylenol to control the horrible cramping that seemed to follow me each day during any flare up. I had to learn not to eat during the day so I could control and limit my bathroom visits but those of you who have ulcerative colitis know that each day can be an adventure because each day is different.
I stayed on entyvio infusions throughout 2019 and was able to get off of prednisone in April and things started to improve slowly then after an endoscopy in May Dr. Szeto found a mass in my colon and became very concerned. I then had a procedure in August to remove this mass and was thankful it was not cancerous and was smaller than they originally anticipated which was great news. I was told the mass was due to inflammation from my active ulcerative colitis and not from any possible cancer growth which made me feel more at ease because colon cancer is a high risk for those with any kind of bowel disease and my grandfather had colon cancer. The good news during this procedure is that there was some improvement found in the colon because the inflammation had some improvement which indicated the entyvio was possibly starting to work. The months following I started to feel better and things started to improve as I was able to tolerate more foods and not have to run to the bathroom with a sense of urgency. I had more energy and could eat during work without the fear of having any issues which was such a relief. However, Dr. Szeto left in December of 2019 to start her own practice which was too far away for me to drive so I decided to continue with Dr. Christopher Stallwood who assisted Dr. Szeto with the procedure to remove the mass back in August (https://providers.steward.org/ma/brighton/Christopher-Stallwood-11-nevins-streetsuite-402?)
Dr. Stallwood continued my entyvio infusions in January of 2020 and things were going well for months without any prednisone for over one year which was a huge win without any steroids. I was excited because things were finally going in the right direction and we even talked about cutting down my mesalamine tablets from 4 to 2 which is huge because that means the entyvio is working and possibly on my way to remission. Then I had to have abdominal wall reconstruction surgery to repair hernias and defects at the end of May of this year because it was necessary and planned.
On June 22nd I went for my first entyvio infusion after major surgery and within days of my infusion I flared up once again and I started to have bleeding issues, cramping, multiple bowel movements with urgency, fatigue, tiredness and other symptoms that were not welcomed. My intestines after the major surgery were inflamed which unfortunately put me in another major ulcerative colitis flare up that I am presently experiencing. Dr. Stallwood did a colonoscopy in July of this year and the inflammation is mid to severe again in the colon and rectum which put my inflammation blood marker very high. This is too bad because my abdominal wall reconstruction surgery was a success and I have been back to work for three weeks after spending 9 weeks recovering from this surgery.
So I am currently in another major flare up back on prednisone for the first time in over a year which is disappointing considering the past year has been a year of improvement with positive results. The last six months I have had two surgeries which have played a major role in the state of my ulcerative colitis from going to possible remission to now a major flare up. I talk about the surgeries here on my blog so check them out.
On August 10th I went for my latest entyvio infusion hoping that the entyvio will bring healing in my colon and rectum so I can begin to recover from this current flare up and continue to work towards remission. I am currently on a prednisone slow taper to minimize the side effects of tapering while managing flare up issues that continue to be bothersome and tiresome. While on prednisone it is hard to know if the entyvio is working or is it the prednisone masking the unwanted flare up effects. I will find out in the next several months because I am tapering off prednisone and scheduled another entyvio infusion on October 5th. I am remaining hopeful and positive that the entyvio will once again work and maybe this time it will bring with it some healing for my colon and rectum. Now I have to use enemas once again to bring relief to my rectum which is not fun but you gotta do what you gotta do to get better.
I am remaining positive and praying for the Lord to use the entyvio to bring healing and remission because having ulcerative colitis sucks big time!! It is a never ending battle that sees some wins but suffers some loses at different times during the journey. It is frustrating, complicated, personal and effects the lives of those we love which is family and friends because they do not understand how difficult and tiresome having ulcerative colitis can be. Friends and family do not understand at times why you do not want to go out or be around others while experiencing a flare up because they have no concept of the pain and personal battle one has with having this auto immune disease. It is a humbling disease that can effect you emotionally and spiritually because like any disease or cancer you can over think negative stuff especially if you are hurting physically. I refuse to let this disease define me because it does not define who I am!!! However, it can define you if you let it ruin and control your life with thinking nothing but negative things.
As a Christian I have learned to ask the Lord to give me strength to endure the negative so I can celebrate the positive!! I know remission is coming and I realize this is a major setback but I will not let this be the end of my story!! Don’t let ulcerative colitis, cron’s disease, cancer or any other horrible disease define you!!! God defines you as fearfully and wonderfully made!(https://www.biblegateway.com/passage/?search=Psalm%20139:13-16&version=NLT) There have been many times throughout my journey with ulcerative colitis and my other physical issues that I wanted to quit, but this verse has been the verse I go to when I want to quit. Psalm 73:26
My health may fail, and my spirit may grow weak,
but God remains the strength of my heart;
he is mine forever.
Trust me I have wanted to quit many times because ulcerative colitis has tested my patience, endurance and at times has taken everything out of me personally, spritually and emotionally. Let me add this by saying ulcerative colitis is only one of my major health issues not to mention my dilated cardiomyopathy and the abdominal reconstruction surgery I just had so I know the pain and suffering involved. I just choose to continue to trust in the Lord knowing He is in ultimate control of my body and I need to trust in Him with all of my health issues!! My faith is in Christ the one who died for my sins and offers forgiveness and eternal life and I did that many years ago. I have peace knowing my sins are forgiven by a God who loves us and died for us. Do you know the peace and forgiveness that only Christ can give??? He forgives our souls and can give strength to our bodies even if they are broken and sick like mine. If he can forgive a sinner like me he can forgive anyone wanting forgiveness.
I hope I have been able to encourage you today and please leave your comments and share this with others!!! Like you I need some encouraging words so please let me know if this story has given you hope and some encouragement!!!
Till next time!!!