I’m actually not really sure how to start this post. It’s such a sensitive subject for most IBD patients. The subject of colorectal surgery. And although I was diagnosed with Ulcerative Colitis 6 years ago, I have only become really familiar with all the terms and procedures two years ago, and not really understanding the effects of it until about 9 months ago once the initial shock and dust settled. You’re probably wondering why would an IBD patient not really understand or know all her options. Well, because if your situation was like mine, then you were told that SOME patients have their colons removed to prevent colorectal cancer. But that most IBD patients actually don’t need surgery. I was told that my UC wasn’t all that bad and that if I ever did WANT surgery, then I could do that after I was 40, but not before then. So, I believed that the option was not open for me before I turned 40. I was told that I had to be done having children, and that my UC would probably begin to bother me more when I started menopause.
Well…I’m not thirty. And I was nowhere near 30 when my UC started to “bother me”. And I was not done having children when they took out my colon two years ago. In fact, I had been told surgery was not an option so much that when it came down to talking about surgery in a very dire situation I freaked out and almost refused to let them operate. And then in my morphine/dilaudid/zophran, sleep deprived, missing my child, scared of impending death state I heard the word, CURE. Cure? As in, no pain ever, cure? As in, I’ll have energy and strength and control over my bowels again, cure? Cure, as in, I will be a totally new person and I can put this whole nightmare behind me? That’s what one set of doctors told me. But then my amazing angel of a surgeon came in, sat next to my bed and broke everything down to me. And what I found out was, that I wasn’t necessarily getting a cure, but a better solution and a last resort in place of medication.
Unfortunately, there is a battle within the IBD community, a dividing line. Those of us who advocate for surgery and those of us who advocate against surgery being a cure. You, see what I wrote there? These advocates are not advocating against surgery itself, just against using the term cure when talking about surgery. Where do I fall? On both sides. I absolutely believe that people should get a colectomy! I see absolutely nothing wrong with the removal of a diseased, infected organ that is essentially killing the person whose body it occupies. Do I believe it is a cure? No not really. Here’s why.
Yes, the Ulcerative Colitis is gone. As are the daily UC medications. However, if you have Crohn’s as well…that is not gone. And the removal of your colon does not remove UC or precancerous cells in your rectum. It doesn’t remove your arthritis and fatigue. The urgency to go and the pain associated with bathroom visits is gone…unless you have a fissure or the skin abrasions I like to refer to as adult diaper rash. And with a J-Pouch it is sometimes very hard to hold things in or tell that you haven’t held things in. I’ve spoken to people who have hardly any feeling in their anal cavity so they can’t really catch things before they run out…if you know what I mean. Periods…well, let’s just say it feels like you’re going through the last two hours of labor every month. You have to go to the bathroom a lot more than before…a tremendous amount in the first few months. You still find yourself waking up in the middle of the night or early early in the morning to go to the bathroom. And let’s not forget pouchitis which feels very much like a colitis flare up. Now the Ostomy route is a lot easier. However you have a WHOLE new life there as well. The pain associated with the pouch surgery lasts a while. Then there are occasional blockages and obstructions, fatigue, dehydration, hundreds of dollars in medical supplies every month. Skin irritation, leaky bags or flanges, weekly changes, etc etc etc.
Now I say these things, not to scare, but to inform. I had a rude awakening when I was released from the hospital. Yes, I woke up from my surgery feeling SO MUCH better. And I feel better now. My hair has grown back, I’ve put on weight, my teeth have stopped breaking and aren’t gray anymore, my skin isn’t dry, and I’m not as depressed and in pain. Even my arthritis has mellowed out a bit. But when I had my surgery, I was not prepared for the new things that came with the responsibility of having an ostomy or a j-pouch. I didn’t think I would ever have pain, depression or fatigue again. And that is where I was wrong and that is where the word, Cure, can be dangerous. For a few months, I almost went into a deeper depression because I was still having a difficult time with just getting up to get my kid to school on time. Even now I find that having a cramp in my pouch or getting dehydrated easily brings major frustration, because I really want to be cured of this. But the fact of the matter is, there is no cure. There is life with IBD and then there is death. I chose life. And with that I have a new functioning internal pouch that has made life easier and better…but I am not cured.
I think that’s time we start talking about this option, just because you never know where you’re IBD journey will go. When I was diagnosed, my disease was manageable. Research and ask questions. Once you get diagnosed, learn about all your options. Know how it can be managed, and how bad it can get. Most of us that have had our colectomies have had them done in an emergency situation where there wasn’t enough time to understand what was going to happen. Would I have made a different choice if I had known? No, absolutely not! My only choice was to have my colon removed. However, I think that my recovery would have been less stressful and less frustrating if I had known and understood the truth about what was about to happen to me. Ask your doctor lots of questions, make them give you true answers. Then I would hop on twitter and Facebook and talk to some of us Ostomites and Pouchers who are living this post-colon life. The community has grown so much and has become rich with knowledge, love and compassion. It’s safe to talk about fears and ask questions. So do it! Seriously! Come on with it! Tweet me, email me, comment on FB and I’ll get back to you. And if I can’t answer it, I’ll send you over to someone who has had your similar experience. Reach out…we’re here!