Hello everyone. I am a new member to this community and still very new to life without a colon.
Little Bio ...
I am a 63 YO retired Occupational Health & Safety professional. I experienced my first sign of bowel problems in November, 2011. I was diagnosed with Moderate UC in February, 2012 and had my first visit with a GI specialist in May, 2012. So, the UC had almost 6 more months to develop before any treatment got started. At first I didn't feel nor look very sick and because the colonoscopy and diagnosis was made by a general surgeon in a different county, the GI guy only had my story and a written report to guide him so misinterpreted the extent of the disease. I was started on Prednisone with a plan to continue with one of the biologics after the Prednisone took the first whack. Enter complication #1. I have a history of Retinal Toxoplasmosis and the biologics are contraindicated so I was put back on the Prednisone while awaiting an appointment with an Ophthalmologist. We needed to determine which posed the greater risk. While waiting for the appointment, I continued to get sicker and sicker and the Prednisone gave me no relief whatsoever. By February,2013 I was pretty much housebound with pain and frequency. Prior to all of this I had trouble having BM's anywhere except the privacy of my own home but by this time I could write a book called "Places I've Pooped". And now I know every bathroom between my house and the specialist (80kms). In February (2013)my GI specialist admitted me to hospital and I was investigated by the departments of Medicine, GI, Infectious Disease and Surgery. After 10 days of poking and prodding, the decision way made to start me on Remicade. During the work-up, it was discovered that [at some point in time] I was exposed to TB so I was immediately started on Isoniazid and Vitamin B6 (prescribed for 9 months). I was also prescribed a prophylactic antibiotic to reduce the risk of a flare-up of the Toxoplasmosis. I had my first Remicade infusion in the hospital and was then discharged. It appeared that the Remicade was going to do the trick so I was elated. However my elation was to be short lived. Long story short, it failed to provide any relief and I continued to go downhill.
At my next visit to the GI specialist on April 2, 2013, I was told there was nothing more they could do and they recommended urgent surgery. I saw the surgeon for a consult on the 11th and was in the OR on the 29th. During those 3 weeks my health really failed and by the time I got to the hospital on surgery day, I was literally knocking on death's door due to anemia and electrolyte imbalance. I had the surgery, a blood transfusion and boluses of electrolytes and remained in hospital for 10 days.
Post-op Sub-Total Colectomy with end ileostomy and Mucous fistula. There was a lot of damage to the tissue from the extended use of Prednisone and my surgeon did not want to risk any leaking from the staples at the end of the rectum so he brought it to the outside of my abdomen on the opposite side from my ileo stoma. I did quite well post-op considering the circumstances and by early July I was starting to feel pretty good (physically) and then I started having all sorts of weird symptoms such as nausea, weakness, fatigue, headache, muscle pain, poor appetite, itchy skin. I was back for a surgery follow-up and my surgeon felt it was just because my body was so run down that it was still trying to adjust. The next week I had blood work done to monitor my liver (because of the TB medication) and my liver enzymes had skyrocketed. My GP called me that same day to instruct me to stop the Isoniazid immediately! She said that would account for the symptoms I was experiencing. One month earlier, the enzymes were fine. Things can happen so fast. Nothing w can do but wait for the enzymjes to return to normal and she had no idea how long it would take. I just pray there is no lasting damage. Today is day 6 without the drug and I can see minimal improvement in the symptoms.
My surgeon feels that I am doing fairly well, all things considered and told me to start thinking about J-pouch construction. I always thought that was a 2 step process but he says he can do it all in one procedure????? Either way I have to have the remaining piece of rectum removed so I am thinking I should give it a go but still gathering information. I hate this ostomy!!! I know it saved my life and I know I feel a lot better than before I had it and should be thankful as it is a small price to pay for my life but I don't think I will ever accept it gracefully. I still have some time to think about it because my surgeon will not take me back into the OR until I am healthy again.
I joined this community to read about the experiences of others to help me make the best decision I can.
Original Post
