I have been an registered nurse(RN) for 25 years and the mother of four children, married for 24 years.
My brother who had Crohn’s disease starting as a teenager, died at age 43 with colon cancer in 1997. I had two colonoscopies at the advice of my doctor that were negative and then was diagnosed with ulcerative colitis in 2008 after a colonoscopy.
I have been on many different medication regimens that have given fair relief of symptoms at times. Over the past two years my symptoms have been virtually constant and difficult to manage and work through, and to do any activities with my kids and family, or plan activities and outings with friends. I’ve also had upper GI series, MRI’s, CAT Scans, blood tests and multiple MD visits. Because of my family history of cancer and continuing difficult to manage symptoms, I’ll be having colonoscopies about every three years.
Some more about me:
I love to write, exercise, and bake. I love all kinds of music. I enjoy entertaining, gardening, history and reenactments. I love to be at the ocean. I also like to volunteer at local shelters and have been involved in helping distribute food, clothing and other needs to people struggling with poverty and crisis pregnancies. I enjoy teaching health care sciences and other topics.
Over the past two years, eating anything has become painful so I have limited my diet to primarily rice and yogurt, although lately even that has become painful. Symptoms that affect me every day are that I no longer have a desire to cook or eat (it hurts), abdominal cramping which is unpredictable during the day and night, rectal pain that is almost constant with bleeding, frequent stools and diarrhea, anal fissures three times in the past two years, nausea, fatigue and bone and joint pain.
Hope for Living and Overcoming Ulcerative Colitis
UC has changed my life in many ways.
My father had UC and was one of the first people in this area in the early 1970’s to have a colostomy. No one had ever heard of it, and I remember him being interviewed in the local paper and becoming the president of the Ostomy Association in the area. Growing up with a father with an ostomy was scary and different for me. Because it was one of the first ostomy surgeries performed here, he almost died immediately after surgery and that is a day I never forgot – the day my mother got the phone call to come back to the hospital, that my father did not look like he was going to make it. She had just come home from staying the night with him postop. That changed my outlook on life greatly. I was 8 years old at the time. However, his quality of life when he recovered from surgery was excellent and he became able to do and participate in anything and everything after that.
For myself, UC has developed and gradually worsened over the years. I always had “bowel problems” growing up, I just didn’t know what it was. It became more and more limiting, or at least annoying, into my twenties. After my brother died and I was finally diagnosed the progression over the past four years has been steady. At this point, the last two years have been very challenging physically and emotionally, trying to enjoy things with my family around the logistics of this disease, and the lack of my employer’s understanding as well as my own embarrassment/inability to communicate the often disabling effects has been tough.
I have been on asacol at first and thought it was a “horse pill” but also developed a genuinely greater understanding of what some of the patients I see with chronic conditions actually go through every day. From asacol to mesalamine to lialda, prednisone and many other drugs and attempts at limiting my diet to help control symptoms. My GI MD has been extremely thorough and caring, sensitive to my needs and willing to spend time talking things out and trying alternatives. My husband of 24 years has been very supportive, listening and seeing me in bed, lying down from pain and exhaustion after bloody bouts or pain. He has never complained about my limitations over the past two years especially, and has tried to help as much as he can. My kids are used to seeing me lying down over the past two years which has been difficult and discouraging for me, especially when it limits time together or time doing anything remotely fun or active.
I have been most concerned as of late with getting through the day, and also with the potential for ostomy or surgery although my doctor has not brought that forward at this time. I know if the progression doesn’t stop, it will eventually be one of the choices on the table.
I started with asacol, at the time it seemed like such an adjustment! I wasn’t even really taking tylenol regularly! That progressed to canasa, canasa suppositories, nexium, prednisone, flagyl and other antibiotics. I have tried probiotics but they haven’t seemed to help, or at least the types I tried haven’t or have been too expensive to continue on. Prednisone seemed like a wonder drug and worked for a short time, but ultimately caused further GI bleeding. I then was on a regimine of canasa suppositories a.m. and p.m., nexium, hydrocortisone suppositories in the p.m., hydrocortisone enemas when flare ups have been excessive, but again increased bleeding so I had to stop them.
I have been on amitryptilline to slow GI motility and treat the depression that comes with UC for some of us, but had side effects of vision blurring, ringing in my ears, feeling distant and no real change in either the depression or the GI symptoms so that was stopped. I have learned that 90% of serotonin receptors are in the gut, NOT in the brain. So it makes sense that when the mucosal lining of the GI tract is injured/ulcerated, people can develop a physiologic depression, hence the amitryptilline works for many people. I was taking multivitamins and also calcium because I developed severe osteoporosis probably because of lack of absorption. I was offered IV drug treatment at that time but opted out because of the potential side effects, and the hope I have that possibly diet changes and maybe some baseline medicines will help. I would like to be medicine free but I don’t know if that’s possible. Current drug regimine: canasa suppositories p.m. with canasa enema for evenings that are worse, nexium, bentyl up to three times a day for GI motility issues, lialda 1.2 GM two tabs in the a.m. and 2 in the p.m., Imodium as needed, TUMS.
written by “Hopeful RN”
submitted in the colitis venting area