Ulcerative Colitis…the extreme cure – post 1/3 in a series

Surgery | J Pouch | Ulcertative Colitis | Colitis | Crohn's | Recovery | Hospital | Ileoanal Anastomosis | Colectomy | Colostomy | Trauma | Abdominal | Scars | Medical | healing | adhesions | bowel | obstruction | ileus | peristalsis

When I was about 19 years old, I was diagnosed with Ulcerative Colitis. Not a fun disease. It was characterized by lots of cramping pain and lots of rectal bleeding. For a few years, we treated it with medication – mostly steroids – giving me that stereotypical bloated face look…sickly to say the least. It kept me from going on trips of any length, and certainly kept me from any place where a toilet was not readily available. It was embarrassing and debilitating. Finally, on my 21st birthday, a couple days before Thanksgiving, I called my doctor one more time with unbearable symptoms and he told me to go to the hospital and that they’d be expecting me.

For the next 30 days, I was on IV fluids, TPN (IV nutrition), steroids, antibiotics and yes, they stuck that GI tube up my nose and down into my stomach to keep everything out of my bowels in order for them to rest and hopefully, heal. If you’ve ever had a GI tube inserted, you know the agony. It’s so unnatural to stick a tube up your nose and all the way down your esophagus while you’re awake…horrible. I had colonoscopies that certainly showed polyps and bleeding ulcers and the whole nine yards. I spent so much time in that Torrington hospital just waiting for things to ‘turn around’ naturally…or at least…on a bunch of medication, but it was beyond me why the plan was just to ‘wait and see.’

Finally, my parents were contacted by my cousin, Heather, whose sister-in-law had had a then somewhat revolutionary surgery to cure her colitis, and it was performed in Boston by Dr. James Becker. It was a quick, easy decision to consider this avenue between my parents and I. I was getting no better sitting there at the local hospital, and nobody had any idea if and when I would get better along this track. So, shortly after spending Christmas in the hospital, after already having spent Thanksgiving there, I took an ambulance ride up to Boston Medical Center, the training facility for Tufts University. The very day I arrived, Dr. Becker got me into colonoscopy immediately. Following this, he rearranged his entire surgery schedule for the following day to get me into surgery immediately. I was that sick.

So, as slow – or non-existent – as my progress was in Torrington, all the while I retained a hugely positive attitude. Call it the narcotics I was on, but I like to think that I had been brought up to remain optimistic. I knew I was there to get better…I was treated well and I knew eventually that I would be better, and that kept me going positively. Getting to Boston was the final step in getting better and I was elated to be in a place that could take my care to the next level. I was so excited about surgery. Little did I know what surgery was going to be like. In my naive mind, I would go to sleep and wake up cured, back to my old self, ready to take on the world. Well, let me tell you what threw that off course.

Perhaps it was the rush of the emergency surgery, or just an oversight on the part of the surgery team, but whomever was supposed to explain the surgery to me and what to expect upon waking, did not do their job. Now, yes, I was on heavy narcotics for more than a month and perhaps I just forgot the orientation, but I don’t think so. I think to me at the time, that “surgery” was almost an abstract term. But in reality, exactly what they were about to do was absolutely nowhere in my realm of understanding or expectation. It wasn’t until a week after surgery that someone finally explained exactly what had been done to my insides, and they did so on the back of a napkin.

That being said, after an almost eight-hour surgery, I slowly began to come out of anesthesia. I can remember yelling at nurses walking by and being so frustrated that nobody was responding to me. I had come to learn later, that this experience is a common occurrence – thinking you are speaking, but nothing is actually being verbalized. That was just the beginning of my frustration, as I started yelling obscenities – or so I thought – at all these people who continued ignoring me. Then, I had heard someone say that the morphine didn’t work for me. Now, in my state of mind, I thought that meant that I had just endured a long major surgery without any pain medication, which was why I was now basically on my death bed. Of course, they would have simply found another medication that did work, but I didn’t know that. As I said, I was not prepped for what to expect when I woke up, so the tube in my nose, the oxygen mask, the almost 12 inch incision, the drainage tube, the – oh my God – colostomy bag! I had no idea any of this was part of the plan and I was devastated and scared…extremely scared.

Yes, come to find out, I had endured a total abdominal colectomy with ileoanal anastomosis J-pouch surgery. Ileoanal anastomosis surgery (commonly called simply J-pouch surgery or IPAA, for Ileal Pouch-Anal Anostomosis) allows you to eliminate waste normally after removal of the upper and lowest parts of the large intestine (colon and rectum). J-pouch surgery avoids the need for a permanent opening in the abdomen (stoma) for passing bowel movements. However, in order for the organs and new artificial connections inside to heal from the trauma of surgery, I would need a stoma and colostomy bag temporarily. Can you imagine waking up from surgery to find a huge incision and a colostomy bag without ever expecting it? I was in rough shape, physically and emotionally.

But the healing ensued. After a week of recovery in the hospital, I was on the way home. Weak and slight and in pain, but going home. Unfortunately, after only a few days at home, I was vomiting and nothing was getting through…another blockage. I would have to make the two and a half hour trip back up to Boston for an exploratory surgery through the exact same incision, to find the source of the blockage creating the problem. Not fun, but certainly necessary. Finally, I was able to heal at home for the next few months. And after a frustrating run of pooping out my abdomen and dealing with emptying colostomy bags, it was time to put me back together. Thus, a third surgery was performed, called a “take down surgery,” to removed the stoma and colostomy, sew my remaining small bowel back together and let the J-pouch start doing its job. It was a long road, but essentially, this series of procedures cured my ulcerative colitis.

No more pain, no more bleeding. Much more frequent bowel movements, since I’d never have the storage capacity that I used to have, but I was cured. And I had a great run for 18 years. I owe my life…the quality of my life…to the surgeons in Boston who worked their magic. I thank God every day for the second chance at life I had because somewhere, doctors figured out how to remove a major organ (the large intestine) and believed that we could live without it with a little mechanical and medical ingenuity. I am forever grateful to Dr. James Becker and his surgical team at Boston Medical Center.

Surgery Number 4, eighteen years later – post 2/3 in a series

Surgery 4 Recovery; post 3/3 in a series

 

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