After lurking anonymously on this forum for several years prior to my surgery, I feel it is time to give back and hopefully provide some of the same insight and comfort I received from reading others experiences.
My baptism into the world of Ulcerative Colitis occurred when I was 28yrs old. My initial flare up was terrible and I didn’t really receive correct treatment for almost three weeks. In that time period, I was bed ridden and lost almost 30lbs. It didn’t help that I didn’t have health insurance at the time, but I finally got the treatment that began the healing process: heavy doses of prednisone and maintenance Asacol.
The UC stayed relatively under control for a couple years. I was able to go on and off the Prednisone as flare ups occurred and always on the Asacol. But eventually the steroids wouldn’t hold the UC at bay. Thus, an additional four year battle to manage this terrible disease truly began. Sparing all the gory details, to which all you sufferers are privy to, I went through the following laundry list of medications.
- Asacol HD
- Nicotine (yes, I actually tried smoking cigarettes!)
- Pain meds (several different kinds)
At one point, very close to my rock bottom, I came home from the pharmacy with literally a paper grocery bag full of prescriptions.
Now, to get to the point of this story.
Probably 3 years into my 6 year battle with Ulcerative Colitis, I began to get recommendations from doctors and family alike, to get the surgery and be done with it. But I was not in the mindset to give up. I was convinced that I was going to be in the lucky minority that goes into complete remission and never has to deal with the disease again. Each times things got bad, a new treatment would be available, or I would be ok going in for 3hr remicade infusions. I was a stubborn guy and I was extremely afraid of getting my colon removed, having an ostomy bag, etc. So, I dealt with flare ups and associated symptoms for the next three years.
During this time period, almost everything I loved to do was compromised or removed from my life entirely. I was an avid competitive runner, I could run sub-5minute miles, would win local 5 and 10K road races. I loved to camp, hunt, fish, go to the movies, roadtrips, vacations etc. To say I wasn’t depressed during this time period would be crazy. Somehow, I was able to maintain a full time job and wonderful marriage.
My days and activities had to be very structured. For example, my 45min commute to work had pit stops where I knew I could pull over, run into the woods and go to the bathroom at a moment’s notice. Going anywhere new caused pretty bad anxiety, because I didn’t know where the next spot I could stop for an emergency bathroom break. Again, these are things all you other UC sufferers have or still do deal with.
Fast forward to March 2013, thus began a 5 month spiral to my rock bottom, the point when I had no more fight left in me and a decision had to be made. I was having the usual flare up that was not being held at bay by a very recent Remicade infusion. What was different this time is I developed a high fever that wasn’t associated with any virus. I went to the hospital and found out that I had a Clostridium difficile bacterial infection. I spent two days in the hospital getting intravenous anti-biotics and prednisone.
Once I was stabilized, I was sent home, but I never did recover. I was in a constant flare up for the next 5 months and my Gastroenterologist began pummeling my system with a cocktail of drugs that was beginning to harm me more than the UC. Why? Because I was not ready to have the surgery.
The last 2 months are what beat me into submission. I had become almost completely incontinent. I was having accidents in my pants up to three times a week. I would have only about 1 minute from the first urge to go to the bathroom to find a suitable location before it was coming out whether I wanted it to or not. I started wearing a type of diaper pad for God’s sake! This, is what it took for me to accept that surgery was necessary.
Deciding to have the surgery provided and almost instantaneous mental and emotional relief. I had been sick for so long, that it had become my new normal. I didn’t realize the constant level of distress I was living in and how it was taking its toll on me and my loved ones.
The weeks leading up to the surgery were much of the same concerning the UC, but an end was in sight. I had been visiting these types of forums for a few years by this time, but really started diving in deep leading up to my first surgery. I wanted to know all the possible outcomes good and bad, so I could mentally prepare myself.
During the routine tests and check-ups conducted a few days before the colectomy, it was found that I again, had come down with C. Diff. I was told that if I didn’t get rid of the infection prior to the surgery, it would have to be postponed. Fortunately, it cleared up and it was a go.
Apprehension and fear is certainly going to be normal before such a major procedure, and I was not immune to that. But again, I was ready, I had reached a point where life without this diseased colon had to be better than life with it. I was having the complete colectomy and ileo-anal anastomosis done in one procedure. The two-step surgery that would require me to come back for the final take down in about 8 weeks. August 13th 2013, I went under the knife.
Photo: Me, not so happy, post colectomy/ileo-anal anastomosis.
When I woke up, everything was groggy, but my wife and parents were there and they all gave me the thumbs up. At first it was hard to comprehend everything, but as the anesthesia wore off, I noticed that I no longer had the constant urge to go to the bathroom. It really is an instant change. But there is pain. They keep you fairly medicated, but this isn’t a minimally invasive surgery. Things had been removed, refashioned, tweaked and added. And, I had an ileostomy bag. All of these facets added to the pain, and even through the narcotic haze, I felt it with every movement and breath.
The doctors want you to get out of bed and walk around as soon as possible, because it aids in recovery. This, for me, was the most difficult part. But I did it. I had mentally prepared myself for this battle and it helped tremendously. I knew things would get better, but I had to power through the bad to get to the good.
It was hard to see my ostomy bag and stoma for the first time. It’s not natural to have a piece of your insides out. It’s not comforting to also see your bodily waste pulsating out of a little mutant hole, but it gets better. It ALWAYS gets better. I spent 5 days in the hospital before I was good to go home and continue rehabbing. I learned how to change the ostomy bag, what to expect, who to call and contact if I had any issues. I was certainly ready to be in my own bed.
Certainly, the most challenging aspect after the first surgery was the ostomy bag. After the pain and soreness dissipated, it was the maintenance of the stoma and bag. I had issues with stomach acids irritating the skin around the stoma and it burned quite a bit. There are powders and creams that help alleviate this, but it was never something I fully figured out during my time with the ostomy bag. Another issue was that I am of eastern European and Italian decent, I have a bit of body hair. This became an issue as the hair grew back around the stoma and had to be shaved and trimmed as often as possible. A clean skin surface makes for much better base plate adhesion. Also, getting a good sizing for the stoma hole is very important. Changing the bag is a learning curve as well, but the rumors are true, Marshmallows are your friend. Definitely reduces the output and increases confidence that you won’t leak while changing bags.
Eventually, I returned to work with my new friend (the ostomy bag) and waited until I was ready for the take down surgery. The best part of this time period was, I DID NOT HAVE UC ANYMORE. I was able to go places confidently, I could empty the bag at my convenience, I was in control of my body again. I was not 100% “normal”, but it was so much better than before the surgery. The ostomy bag is easily concealable and only you and the people you tell will know you have one. It is that easy to hide.
Eight weeks later and I was being prepped for the take down surgery. For this, I had to go to the hospital and have the Jpouch inspected from the inside. This day was full of not so comfortable situations. The first examination was the doctor examining the pouch with a camera which included having to stick a camera up the old bum. Not so bad considering the amount of things that we with UC have had to go through concerning our butts.
The more uncomfortable test came when they needed to test the strength of my sphincter muscles. This was to make sure that I would be able to hold in the contents of the pouch without leakage problems. For this, the stuck what looked like a small, deflated weather balloon into the opening of my anus. The goal was to inflate this balloon and measure the amount of pressure I could force down onto it. The problem for the nurses, and for me, was that I keep squeezing the balloon out before they could inflate it enough. This was not a very comfortable procedure and after about the 6th time of me squeezing it out, I said “Isn’t enough proof that I keep squeezing this thing out that my sphincter is pretty damn strong?” They agreed and that test was over.
The last test was to actually fill the pouch with a liquid with some sort of tracer in it so they could see if there were any leaks. So, I was pumped full of this stuff, so much so, that my ostomy bag filled up too! Fortunately, I passed this test with flying colors and I was approved for the take down surgery scheduled for a week later.
Oh, did I mention that all these tests took place on my 34th birthday? Not my most favorite birthday ever.
So, October 16th, 2013, I went under the knife again for (hopefully) my last surgery. The removal of my ileostomy and take down to my newly formed Jpouch.
The surgery went well and I woke up in pretty good spirits. I actually felt great, no extreme pain and giddiness from knowing that I no longer had an ostomy bag and I was on my way to truly being UC free. I was able to immediately get up and walk laps around the hospital floor, completing ten laps on the first try. This was a cake walk, or so I thought.
What I didn’t know, was that anesthesia can linger for quite a while after surgery and since I was also on pain meds, I was feeling pretty good. Once the anesthesia fully wore off, I started feeling some discomfort. Also, this was the beginning of my Jpouch actually functioning. Once it started filling up and expanding, it hurt.
So, the first day was bliss, but the next four were anything but. The gas pains were the killer. There is nothing you can do about it and pain meds don’t touch it. It was something I had to deal with and allow to pass. It was a very tough four days, but it did pass and things got better.
The one thing you’ve got to remind yourself with this surgery is that it takes time to heal. I’m a pretty impatient person when it comes to not feeling well and I tend to push myself a little harder than recommended or is necessary. I’m also hard on myself. I don’t like to feel weak and rely on others for help, but they were humbling times and I needed to remind myself of these things.
I’m going to switch gears and not follow the chronology post take down surgery. I want to let you all know how things are doing and what I found to be the best parts of living without UC and with a Jpouch.
Number one: It took a FULL YEAR to fully adjust and heal with the Jpouch. Your body must learn how to manage with this new anatomy. I had lots of discomfort in the beginning and would constantly convince myself that I had pouchitis or some other awful side effect associated with the Jpouch. I have never had pouchitis or other complications the 2.5years since takedown.
I also dealt with a lot of butt burn that first year and CALMOSEPTINE IS THE CATS PIJAMAS! That stuff is literally the best and has saved my butt hundreds of times. In the beginning, the watery stool and abundance of stomach acid really wreaks havoc on your butt. Use the cream.
Learn what foods agree or disagree with your pouch. In the beginning, foods with a lot of acids like spaghetti sauces made the burn worse. Also, lots of fiber was not helping either. Nuts and things that would stay somewhat solid all the way through the digestive tract kind of tore me up on the way out. And alcohol, for me it was not a good match with my new anatomy in the beginning so I had to severely limit my intake of beloved beers and vodka on the rocks. Of course, spicy food. I love it, but don’t try it.
Also, in the first 6 months or so, you will be going to the bathroom frequently. It’s not the emergency feeling of UC, but your ability to hold large amounts of material is limited. The pouch needs to stretch, you need to figure out the feelings and adjust accordingly. But, you don’t have UC.
Where I am today.
I am the happiest I have been in almost 9 years. My life is pretty damn nice and normal. I go to the bathroom probably about 5-7 times a day, but I hardly keep count anymore. It’s actually a good thing when I am sitting at my desk all day for work, it allows me to get up, stretch my legs and take a break. The food sensitivity has decreased dramatically. I can actually eat whatever I want, within reason. I can drink alcohol, within reason. But, dark beers are a treat because they still cause some upset pouch/stomach issues. The butt burn has become a rarity, but I still have a tube of Calmoseptine handy at all times.
I can hunt, fish, camp, ride a motorcycle, travel on a plane, and go on vacations with no worries whatsoever. I can actually go up to 12 hours without going to the bathroom sometimes without discomfort.
The number one thing I am happy about, and yes, this is bragging, I can run again. I can run fast. I recently ran a ½ marathon in 1:21:51. That’s a personal best for me. I am running times that are approaching what I ran in high school and college. I NEVER thought I would be able to do those things again.
In closing I just want to impart some wisdom I have gained in hindsight. If I knew then, what I know now, I would have had the surgery 3 or 4 years earlier than I did. What I understand is that other people can suggest and recommend going under the knife, but only you can make the decision. It is only when you realize how life battling UC is so unbearable, that life without a colon couldn’t be worse. Yes, it’s a tough road to recovery, but the light at the end of the tunnel is super bright. Just ask yourself how long you want to be a slave to the unpredictability of UC or know that you are once again in control.
I hope my story helps, I took a lot away from these forums and they were a tremendous wealth of information. If you have any other questions, I will answer them, no problem.
*****Update January 17th 2019: 5years 5months since surgery.*****
Everything is still good. No problems with pouch or associated issues. No medication other than the Calmoseptine on occasion (when I choose to eat hot wings and drink beer). I know the ramifications of eating spicy food, but sometimes its just worth it!