So what the hell qualifies me to provide advice for those with IBD? To make a long (and ongoing) story somewhat shorter, I first developed symptoms in my senior year of college. It seems like it happened practically overnight, me going from a very healthy college student working two jobs to one that was taking two dozen trips to the bathroom every day, hunched over in pain, having no idea what this was or what I did to cause it. I made it through my senior year and, as planned, began to get things set in motion for a move to attend graduate school in the fall of 2002. That summer, all hell broke loose.
My mother and I went from doctor to doctor, looking for answers; meanwhile, I had somehow convinced myself that this was entirely stress-induced, a product of moving, starting a new job and graduate school all at once. I was told it was IBS, depression, and possibly a psychosomatic response to all of the pressures I was putting on myself. We tried high fiber, low fiber, low carb, no carb, all raw, all cooked diets. Nothing helped. By the time my fall semester of graduate school was winding down, I was subsiding on a diet of ensure shakes and little else, my weight dropping at an alarming rate. Luckily for me, I was living with my aunt at the time, and after seeing me appear in the kitchen one morning, doubled over in pain and white as a sheet, she phoned my mother immediately and told her I needed to get medical attention right away.
After many tests, the doctor came back with a diagnosis of Ulcerative Colitis, which I had never heard of. I began a daily regimen that included 17 pills (Asacol, Prednisone, Bentyl) and was given strict dietary guidelines of what I could and could not eat. Things gradually improved, and while I was far from the normal functioning human I had been a year before, I was getting better. I figured if I just kept up what I was doing, we would be in the clear – or so I thought.
That’s the funny thing about IBD: it has a mind of its own. Within six months, we were seemingly back to where we started, and my mother and I visited the doctor again, desperate for answers. I had lost another 20 pounds in the last month and my hemoglobin level was 6. The doctor briefly asked me if I was planning on starting a family, to which I responded with a quizzical look and a “no”. (I was 23 years old. Starting a family was not exactly on the top of my priority list). The daily regimen of 17 pills became 20, now having added 6MP, an immunosuppressant, to my routine along with – just to add insult to injury – daily steroid enemas. The doctor never went into much more detail on the new medication, just telling me I would be more susceptible to infection. I would have taken Jack’s Magic Beanstalk Beans from her at that point. I just wanted to feel something other than horrible.
Unlike the last time, things got worse before they got better. Shortly after starting the 6MP, I became very weak, ran a fever of 104 and had what I thought was a bad case of the flu. As I struggled through another shift at work one day, my mother stormed in, picked me up and drove me to the nearest hospital, where I was diagnosed with pneumonia in both lungs, hemolytic anemia, and suppression of my bone marrow. I was in the hospital for a week and a half, and on Procrit injections for months afterward, just to get the bone marrow to start producing again. No one could tell me why any of this happened.
After the recovery from that, I was able to function for almost a year. I was far from normal, but it was manageable, so long as I maintained a strict diet forbidding raw fruits, vegetables and anything remotely fibrous. It was working until one day, when it just didn’t. Back to my diet of Ensure shakes, I couldn’t even control the pain or bleeding. I missed days of work, holed up in my bedroom with a heating pad, praying that I would just die so the pain would be over with. Even taking massive doses of Prednisone didn’t help. One night, my then boyfriend came home from work to find me soaking in the bathtub, numb to everything but the pain. He offered me a sip of water, which I threw up immediately. He pointed to my stomach, which now had taken on a mottled, purplish appearance, almost as if I had been repeatedly punched over and over in a geometric pattern. “That isn’t normal”, he said, “we’re going to the hospital”.
Once I was in the ER, I was admitted almost immediately for severe dehydration and tachycardia. Two days passed of IV steroids, but no food or water allowed, as the doctors wanted to give my gut a rest. The consulting physician recommended a surgical consult, who visited with me later in the day. He reviewed my history, and after speaking with both my mother and me, said that once I was stabilized, I might think about having my colon removed to alleviate most or all of my symptoms. We didn’t go into too much detail that evening, as I was exhausted and high on pain meds. I said good night to my mother before she headed home for the night.
The next thing I remember, it was late the next morning and a doctor, one whom I had never seen before, literally came running into my hospital room. He spoke quickly, urgently, lifting up my shirt and making lots of marks on my stomach with a purple marker. “We’re taking you into surgery right away. Part of your bowel has perforated due to Toxic Megacolon.” Having no idea what that was, but assuming it wasn’t a poorly-named heavy metal band as I was inclined to believe, I looked at him as his words sank in and told him that I needed to call my mother so that she could be there with me. “No time”, he responded quickly. I grabbed my cell phone and dialed my mother’s number, handing the phone to him. “She’s a nurse”, I told him. “Explain this to her, because I know I can’t”. As my mother answered, he spoke to her in a clipped tone, clearly in a hurry to get off of the phone. I don’t remember much of what he said, but the words “if I wait for you to get here, there is a strong possibility that she will not make it” clearly stuck out. He finished with her and handed me the phone, telling me that the nurses would be in to get me for surgery prep within five minutes. My hands shaking, I spoke to my mother, who god bless her, kept her cool, clearly and calmly explaining exactly what the surgeon was going to do and that she was on her way. “I’ll be there when you wake up”, she said confidently, though I cannot even imagine the agony she must have felt at that moment. A minute later, the nurses arrived, getting me into a gown and readying me for transfer downstairs to surgery.
I have never asked my mother how fast she drove that day, and I probably don’t want to know. She lived an hour from the hospital under normal driving circumstances, and yet 20 minutes later, as I was being wheeled down the corridor to the double doors to the OR, I heard her voice down the hallway. She ran up to me and held my hand, and then she grabbed the surgeon’s hand too. “Pray with me”, she ordered him, and he obliged. She told me she would see me soon and then she vanished from view as the doors closed behind us in the OR.
I began to come to hours later, wakened by a pain that I can only describe as being ripped in half at the abdomen. Machines beeping all around, a nurse quickly responded to give me more breakthrough pain medication, and sometime later my mother was there, explaining to me that I was in the ICU and that the surgeon had removed my entire large intestine. Instinctively, I reached down toward my stomach with one hand, and as I feared, came into contact with an ostomy bag. She told me that they had gotten the colon out just in time, as it had begun to perforate, and that I would be moved out of the ICU once they were confident that there was no sepsis.
I was in the hospital for 9 days, and while I was nowhere near emotionally ready to process life with an ostomy, I couldn’t get over how much better I felt. The constant, burning, knifelike pain that occupied my abdomen for the last three years was nearly gone. Sure, I had a seven inch long incision down the center of my stomach and was pooping out of a new hole into a bag, but man did I feel better. (Part of that likely had to do with the high from the massive steroid dose I was still on). I returned home and, with the assistance of a visiting nurse, learned how to change the ostomy bag.
Four months after that surgery, now at a healthier weight and feeling much stronger, I returned to the hospital for the second surgery, having opted for a j-pouch, where part of the small intestine is repurposed into a pouch or reservoir, eliminating the need for an ileostomy. I felt ready this time, confident that I knew what to expect. Dr. S (my surgeon) and I had a good relationship by this point, so I felt sure that everything would be fine. I would be in the hospital for a few days, go home, and return in a month or two for “takedown” (surgery to connect the new j-pouch to my small intestine) and be rid of the ileostomy for good. Funny how sometimes the best laid plans can fail.
The surgery itself went well, and I was out of the hospital in 6 days; I went home with my mother so she could attend to my after care. For two days, all seemed fine and well and then on day three I began vomiting. Back to the ER we went, where a CAT scan revealed that I had a full obstruction due to some of the internal sutures failing, which allowed a loop of my small bowel to herniate beneath the pelvic floor. Told I would be going back in for a quick surgery to resolve this, I once again said goodbye to my mother and off I went, back through the double doors to the OR.
I woke up from that surgery in a state of panicked confusion, immediately knowing that something went wrong. As I came to, I couldn’t feel my legs, (turned out they had given me an epidural) and there was an NG tube down my nose, in addition to two more large tubes coming out of my abdomen, which was covered in layers of gauze and plastic, with a pump attached. There were so many machines in the room, pumping, beeping and humming. My mother was sitting in the chair next to me and took my hand, explaining that due to severe adhesions (scar tissue), the surgery that should have normally taken an hour took nine and required the assistance of two additional surgeons. She started to say something else, but was interrupted by Dr. S, who was walking through the door to my room. He took one look at my panicked expression and said exactly what I needed to hear. “You might want to get a hairbrush. You look like shit.” I studied his face for half a second, sensing that he was searching for a sign that I was still okay, my sarcastic and abrasive personality buried somewhere underneath all the layers of flaming shit that was my current existence.
“Fuck you”, I responded, and his expression broke into a wide grin as my panic attack subsided. He took over where my mother had left off, explaining to me that due to an abscess that was also found during the surgery, they were unable to suture the nine inch incision closed and that the wound vac, which I was now attached to, would help to heal me from the inside out. (In case you’re not familiar with a wound vac, essentially an open wound is stuffed with a sponge like material that absorbs fluid from your body that gets pumped out by a vacuum-like device. This constant draining of the wound helps it to heal faster and resist infection). The NG tube in my nose would remain in place, and the thick tube protruding from a hole in my stomach was a G-tube, used so they could feed me while bypassing most of my GI tract so it could heal. Listening to all this, I was calculating the recovery time in my head, and it didn’t look good. As my mother verbalized the question to Dr. S of how long I would likely be in the hospital, I ordered them both out of the room, knowing all too well that I wouldn’t want to hear the answer.
That hospital stay ended up being 6 weeks long, my only connection to the outside world were the moments that my mother and my aunt would load me and all my tubes and machines into a wheelchair and wheel me outside (IV pole and all) for the 20 minute increments that the nursing staff would allow. Once discharged, I spent another two months in hard core recovery at my mother’s house, lucky that she and my step-mother both volunteered their nursing skills so I wouldn’t have to spend several more months at a rehab facility. Simply standing upright was a challenge, let alone walking, not to mention the fact I had to be connected to the wound vac 24 hours a day for 4 weeks after I was home. It’s a disturbing thing, being able to look inside of your own abdominal cavity, as well as having to be washed and fed like an infant again. I felt like walking death – not even human. It didn’t help that the temporary ileostomy was constantly leaking due to the fact that I couldn’t get a good seal on my abdomen given the open incision and all the swelling. My mother was undeterred by this and would cheerfully escort me and all my tubes and machines downstairs each morning to walk on the treadmill for twenty minutes as part of my physical therapy. A couple friends came to visit, but most just disappeared, having no idea what to say or what to do. My aunt moved in temporarily to help my mother and stepmother with their rotating care duties for me; she kept trying to make things for me to eat, none of which were even remotely palatable. I had a horrible period of gastritis that no amount of medication was helping, and the mere sight or smell of food was enough to send me gagging. I was put on TPN (total parenteral nutrition), which is basically a milky looking substance that contains the basic nutrients needed to survive and is given intravenously, until I was able to eat. A close family friend who is a massage therapist stopped by several times a week to offer any sort of comfort that she could, via reflexology, cranio-sacral work and reiki. I lived for those sessions, as it was the only time that anyone was actually touching me that wasn’t related to changing my wound vac, my ostomy bag or to give me medication. More than once I thought about jumping out of a window if I could find one more than three feet above the ground.
Three months later, I had recovered enough that we could finally schedule the takedown surgery to get rid of the ileostomy. I was so ready. After the last incision had been left to close on its own, my once flat stomach had become very lumpy, making getting a good fit from my ostomy appliance relatively impossible, so leaks were frequent.
The surgery was uneventful and I remained in the hospital for three days afterward. When things started “working” the way they should, I was ecstatic. No more bag! Success. It was the beginning of summer, and I decided to plan a party to celebrate the fact that I was finally done with the process, my transition to a bagless model now fully complete. I invited most of my family from all over the country and, looking for any excuse to party, they agreed to come. My mother, ever the party planner, went to a sign company and had a banner made that said “Colonfest 2007 – Repiped and Ready to Flush!” They hung it on the front of the house in my honor. (And yes, I’ll share a photo at some point). We barbequed, we swam, we danced. There were probably 50 people there, and the emotional impact of the day was significant on me. I attempted to take a few minutes toward the end of the night to thank everyone for their support over the last few years, but broke down crying halfway through my speech. It was an amazing night. In some ways, that made the lows that came over the next few months much harder to bear.
Only a couple months after our big bash, I started noticing that I was having odd symptoms. For a week or two, I would wake up in the middle of the night with bad gas pains in my stomach, and I would have to contort myself into odd positions to get them to pass. When they did pass, they were taking the wrong exit, if you know what I mean. A week later, it wasn’t just gas that was taking the road less traveled, it was…..shit. Like, literally.
The first time this happened, I was at work, and as I looked down and it began to register, I crumpled into a ball on the floor of the stall, sobbing. This was far from over. I grabbed my cell phone and speed dialed Dr. S, who scheduled me to come in for a visit. After three separate exams didn’t reveal anything amiss, I begged him to do an exam under anesthesia to find the fistula (a passageway between two organs or structures that is not normally present) that I knew was there. He agreed, and I still remember the look in his eyes after I woke from that procedure. The look said so many things: helplessness, regret, frustration. He told me he had found a recto-vaginal fistula, and while I was glad that they had found the source of the trouble at last, we both knew what that meant, though neither one of us said it. As the doctors had long suspected for years given my resistance to treatments and extra-pyramidal symptoms, it was now far more likely that what I had was Crohn’s Disease and not Ulcerative Colitis. While both are incredibly painful and debilitating, UC (the disease restricted to the area of the colon itself) will often times disappear or become much more manageable after surgery. Crohn’s, raging its war on the body anywhere between the mouth and the anus, on the other hand, does not.
Dr. S told me that the best course of action would be to re-divert my GI system to a temporary (loop) ileostomy while I underwent eight months of Remicade treatments, which would hopefully bring the disease back under control and heal the fistula. He also told me that they had found another, smaller fistula that led to the outside of my body, and that a seton drain would need to be put in to heal it. A seton drain is basically a hard piece of plastic that is placed into the fistula to encourage healing around it. It was pretty much as excruciating as it sounds, particularly down in my nether regions, and for months hot sitz baths were my only comfort. Emotionally exhausted at the thought of another surgery, another recovery and another ileostomy, I agreed, wondering if this process would ever come to an end.
We did the surgery to replace the ileostomy and insert the setons in mid-October, and I began the Remicade treatments about a month after that, having a port put into my chest to allow for much easier IV access, given my rather puny veins. Every 2 weeks, I visited the infusion clinic and spent the better part of a day there, reading, napping and chatting with some of the cancer patients who were also regulars. Their optimistic outlooks in the face of death always put things in perspective for me, and it was sad when regulars would no longer show up, some of them succumbing to the cancer before their bodies could win the fight. There were a few exceptions though, and those that completed their chemotherapy treatments successfully would go to the front of the clinic and ring a large bell that stood there, its clanging sound saying “Peace out, bitches! Catch you on the flip side!” I loved those days.
By late spring of 2008, both of the fistulas had mostly healed, and only a small surgical repair was needed, using a piece of muscle from my inner thigh. I had emerged victorious but cautious, now knowing that I would require life-long treatment with some pretty serious medications in order to keep the symptoms of the Crohn’s at bay as much as possible. Wanting something a bit easier to fit into my schedule being that the treatment would be permanent, I elected to stop the Remicade infusions and go with Humira, another immunosuppressant in the same class that could instead be given by injection at home. After a quick lesson from my GI doc, my husband began giving me the injections each week.
Three months later, in the early summer of 2008, I had the takedown surgery to remove the ileostomy once again. A model patient by now, the recovery from surgery was quick and I was ecstatic, yet cautious. I knew that as a Crohn’s patient I had a 50/50 shot at being able to keep my jpouch, and Dr. S’s warnings to me about possible surgeries in the future being necessary to remove scar tissue from all of the previous surgeries kept me from shouting from the rooftops as I had before. This was a more quiet victory, if I could even call it that, because I wasn’t so sure I had really won. It had become clear in the last six years that my body was going to do what it damn well pleased, regardless of any intentions I may have had for my present or future.
I am happy to say that as of today, that was my last surgery, though there have been definite bumps in the road. Right after the final surgery, I had three hospital admissions for bowel obstructions, all of which cleared within a few days, and to this day I still require frequent iron infusions for my constantly low hemoglobin counts. On the final night of our honeymoon in Kauai, I was admitted to the hospital on the island for another obstruction, delaying our trip home by a day and providing great material for those that asked “So, how was the honeymoon?” More and more, I realized how much stress really does play a role in my symptoms, and after much convincing from my husband, I resigned from my job as a Director of Operations for a large hotel, which although it involved very long days and a lot of stress, I truly did enjoy. I now work part time and while my symptoms are much better, there’s always a part of me that feels like the disease beat me in that respect, and that is a very bitter pill to swallow. Most recently, after a year and a half of relative peace and quiet, I was admitted to the hospital five times over the course of the summer for pneumonia and bowel obstructions, and had a surgery consult to look at the possibility of removing some of the adhesions that are creating the frequent blockage problem near my old ileostomy site. Not sure if I’m going through with that surgery or not, as I’m currently weighing the risks versus the benefits with the surgeon, as I have what is apparently referred to as a “hostile abdomen”. I’ve got a pretty good track record at winning the battles, but it’s clear that the war is far from over.
So there you have it. That’s why I’m taking the time to share these experiences publicly, because if just a small piece of this can help others who are in the same boat, give them a laugh or make life just a little more bearable, then maybe that’s the reason I had to go through all this and the disease hasn’t won, it has just steered me in a new direction. I hope you’ll relate to some things, learn a few tips and laugh at my expense. Because let’s face it – if you can’t laugh at all this shit at the end of the day, you’re fucked.