What About Bowel Surgery?
There are various complicated surgical options available these days which continue to change and develop with the advancement of medical techniques and technology. If you are experiencing significant symptoms, or problems that either warrant immediate attention or have not responded to previous treatments, please consult your physician or gastroenterologist about surgical options that may be right for you.
May 22, 2006, I was hospitalized for three weeks for a dangerous bowel obstruction due to a flareup of Crohn’s disease. My surgeon, the amazing Horace Fuller Henriques, III, removed a large section of my Sigmoid colon along with an attached granuloma, and he removed the terminal ileum and cecum. After a really rough 24 hours with the pain aided by a morphine pump, I began to come back to the world. Horace came to visit me in my hospital room, and while I was in my groggy state, he excitedly told me how he had rebuilt the ileocecal flap. I felt like I was listening to an episode of This Old House on PBS—it was like he was discussing the carpentry job!
It is hard believe that was nine years ago! My quality of life improved after my surgery, so much so that I have remained drug-free and very healthy since then. Sure, I’ve had times of flareups, but I’ve never had to go back to the hospital or stay in bed for more than 12 hours. Since I’m so attuned to my body and keep a food journal, I can notice when flares are coming and I conveniently resort to my dietary and lifestyle regimen in order to stop the flareup before it really knocks me down. I take lots of daily supplements prescribed by my naturopath, too, like VSL#3 Probiotics and Zturmeric, along with Omega 3, Vitamin C, D, and other supplements.
Yesterday, a young mother of two who is a professional singer-songwriter, called me to talk about her case of Crohn’s and her upcoming surgery. I love it when people find me, reach out and email me, and sometimes call me. I feel that the Crohn’s and colitis community is a really tightknit one, and we have the CCFA to help through their efforts as well. But it is the people with Crohn’s, and colitis, the patients themselves, I want to hear from! We have had to endure so much and, in the case of Crohn’s, have had to live with a disease that has no cure. The very active reaching out – whether it’s by email or phone for text message – is a big first step toward healing and taking charge of living with chronic disease.
So back to surgery. . .
Surgery should be a last-resort treatment; but if the need arises, surgery may provide relief for some individuals. About 20% of ulcerative colitis suffers will require surgery at some time in the course of their illness. Approximately 75% of Crohn’s disease patients who have disease in the small bowel will have surgery in the first 10 years after diagnosis. Unfortunately, if no other treatment is done, nearly 50% (or more) of those who have surgery for Crohn’s will still have a reoccurrence of disease symptoms. In colitis that does not respond to medical treatment, surgery is an option that can wipe out the disease. Many people live without the large intestine. In my case, the risk of perforation of the small intestine was very dangerous. If surgery for Crohn’s disease is an option, it is much safer to have elective surgery, rather than be admitted like I was through the ER.
If you have a scheduled surgery for either Crohn’s disease or ulcerative colitis, I highly recommended having a lengthy pre-op appointment with your surgeon so you understand fully the outcomes and what to do and how to prepare. Since I rely heavily on the care of my naturopathic physician, I also scheduled a pre-op appointment with her, where she planned a whole course of preparation for me. This included taking Arnica before my surgery and doing meditations and preparations with diet to lessen the burden on my digestive tract.
After my surgery, the surgical nurses were instructed by my naturopath to place small pellets of Arnica underneath my tongue. It is still amazing to me that this big teaching hospital where I was a patient was so accommodating! Also, the hospital had a wonderful dietitian who helped me slowly introduce foods back into my diet — and made me drink Smooth Move tea! I remember my stepsister went to the local natural foods co-op and smuggled in some organic chicken broth. The wonderful Dr. Henriquez even searched high and low for someone to come in and do acupuncture for me, and there was also a volunteer at the hospital who was able to do Reiki (a form of alternative medicine through “hands-on healing” developed in 1922 in Japan) to aid in my recovery.
After five days, I was ready to go home. It wasn’t easy, and transferring from morphine to other pain meds was really difficult. I also got really depressed and cried a lot as I tapered off Prednisone (tapering should be done with great care, and slowly, so as not to cause a flare-up). But, I let my body gradually heal and realized that crying and being depressed is part of having major surgery, too. But I didn’t just pick up my life the way it was: my recovery lasted about six weeks and I took it day by day, and very slowly, and I asked friends to help with care for my kids and help with house cleaning. I kept a food journal and gradually added exercise every day, along with yoga and meditation.
So, don’t despair if you have a surgery coming up. Instead, take control of the situation and keep a positive attitude!
When you or your loved one was first diagnosed with IBD, you probably felt like your life and taking a sudden spiral downward. You may have found yourself in the state of utter confusion, a deep-seated feeling of loneliness and depression taking root in the very core of your being. This may sound dramatic, but too many sufferers of both Crohn’s disease and ulcerative colitis feel this way in response to their diagnosis. The good news is that the better informed you become about your newly diagnosed condition, the better off you will be in the long run.
One problem that many people with IBD know all too well, is that these diseases, especially Crohn’s disease, can reoccur. Although therapies can reduce signs and symptoms, often the hope for full remission is stymied by widely varying factors.
Treatment options often include hospitalizations, surgery, and medications, but they rarely include a holistic approach that incorporates acupuncture, a new diet (potentially wheat-and-dairy-free), stress reduction, psychotherapy, yoga and meditation, naturopathic medicine, and a special protocol in detoxification.
When the proper groundwork is set for healing, the treatments, lifestyle practices, and even pharmaceutical medications, are much more effective at reducing symptoms and promoting healing. Our bodies were meant to function as a whole, and treatment plans should always be directed at the whole body to achieve the desired effect of wellness.
For me, as a Crohn’s disease patient, I benefit so much from going to see my regular doctor (an M.D.), and my naturopath (and ND), as well as my IBD specialist at the clinic at Dartmouth. I hope that someday soon, all three will be able to work together seamlessly. Until that time, I have to be the instigator, and make sure that my medical records are sent to all three places, and I have to be very proactive to stay on top of my appointments, asking my questions, doing my own research, and creating my own support system. All of the specialists and doctors are very busy people (as most of us are), and it is imperative for those of us with IBD, or our caregivers, to be very motivated.
Sometimes it can feel overwhelming. But make a list of things to do:
- Walk every day—start small, and gradually add miles. . . . A walk on the beach, like my friend in the photo, really releases stress. Do a short yoga stretch before or after!
- Buy a new water bottle—I love my 22-ounce LifeFactory glass water bottle with the rubber exterior!), and take one step at a time.
- Find a recommended naturopath in your area.
- Make sure you have at least yearly appointments with all the doctors on your “team.”
- Embark on the new dietary guidelines in this book.
- Take a high-potency probiotic (I take 1 capsule daily, called VSL#3, that really seems to be helping by bowel movements), or one that is recommended by your team.
- Consider asking your MD or ND to do a complete blood work-up, and also to test your adrenal function.
- (Last, but not least,) Work with a naturopath, preferably, to balance the immune system to achieve homeostasis that is promoting wellness in your mind and body.
Happy Spring Detox and Motivation….. And Happy Almost Summer!
A new year’s tip from LWCC—start planning a small vegetable garden for spring! Just ’cause we (or someone we love) has Crohn’s or uc, doesn’t mean we can’t enjoy food and the delicate taste sensation of fresh herbs!
I am sitting here in my kitchen at home in Vermont, after a lovely two weeks of vacation spent with my family. As I was drinking my morning tea, I looked up and saw this:
So, what does this photograph mean? Right now, it symbolizes rebirth. I started the amaryllis before the holidays from a bulb…and now it is in peak bloom—hope; new life, new meaning…. But lest I wax too poetic here, I should note that a really determined chipmunk (probably the same invader of my garden last summer) is destroying my bird feeder as I write this! As I watch the greedy scavenger—the rodent—I think of the Hindu god, Shiva Nataraja, The Lord of the Dance:
The two most common forms of Shiva’s dance are the Lasya (the gentle form of dance), associated with the creation of the world, and the Tandava (the violent and dangerous dance), associated with the destruction of weary worldviews – weary perspectives and lifestyles. In essence, the Lasya and the Tandava are just two aspects of Shiva’s nature; for he destroys in order to create, tearing down to build again.
Since I found out I was in the midst of a severe flare up just six weeks ago, I have been plagued with fear that I will need surgery, have to take Prednisone again, and live again in the cycle of disease. Prednisone, especially, is a drug I hope I never have to take again—though I never got the symptoms of the round face, the bloating, etc,, I got the inner turmoil kind of symptoms: the frenetic feeling of gears winding up inside your body….not a good state to live in. Yes, those are the fears that lock us inside of ourselves when we are sick.
Well, not to dwell on that is easier said than done!
Here is a photo of my iPhone from when I was in Mexico last week…. As I lay in my hotel room bed for a whole day of fever and drifted in and out of consciousness, I put all the Spanish words for my disease in my “Favorites” in Spanish Dictionary, for fear I would have to explain to the hotel manager in case he had to call an ambulance to take me to the hospital (Merida was probably closest, but the hospital in Tulùm looked like a place for the bedraggled tourists to come to get treated for sunburns!). I was convincing myself that the flu I caught traveling was really a worsening of my flare up into a bowel obstruction.
My irrational fears were perhaps due to exhaustion and loneliness (my family went off to the beach ;(…. But I gradually realized that my fears were making me sicker! I always had trouble traveling when I lived with active Crohn’s-coltis for twelve years. We would pack our kids into the car, tents, camping gear, etc., and travel someplace like Okrakoke Island off the Carolina’s…..I remember that trip fifteen years ago, and being sick as a dog in bed for days, horribly bloated, and despairing the entire time…. I will never go back to that dark period of disease (though I hope to visit Okrakoke again someday in a normal state!), for it was a frame of mind that did nothing but foster the negativity around my life.
So, fast forward to hotel room in Tulùm. The cheerful towels our maid, Gabriella, created in animal sculptures, made me feel worse—their sweet little eyes stared out at me across the bed, and I felt they were mocking me — fever, perhaps?! After five hours of lying in bed and drinking nothing but water, and learning Spanish words about diseases of the bowel, I was ready for a change… I got up, showered, went out with my family for dinner, and my son helped me order a plate of the blandest food we could order at the restaurant, el Capitan.
Perfecto! I felt revived—chicken and vegetables will do that for me, along with a light cranberry juice (pure, no additives), mixed with mineral water. I thought the fact that I wasn’t moving my bowels was because there was a growing obstruction, when in fact it was due to the fact I hadn’t eaten much solid food in the last two days. It is amazing how illness, especially fever, will make us regress. We all want to be back in our mother’s bed with someone rubbing our forehead! My husband, who is not the most hovering-docile sort, was the practical one who said, “You haven’t eaten much at all!”
Well, that is my wisdom for the day…. Or is it wisdom? It seems more like common sense—keep the food journal going, and when you travel especially don’t forget it, or when you are faced with a new situation, like going off to college, or camp, or starting a new job…. It is essential for those of us who live with disease to be able to ask for help, but also to realize that our self pity might be making us sicker.
It is with that thought, and positive energy, that I want all of us to have in our Crohn’s & Colitis community as we move into the new year. “Think Positive,” was told to me by a doctor when I cried in my hospital bed, a few weeks before my bowel resection when I was overtaken by fear of the unknown and shaken by the heavy dose of steroids they had me on. A medical student, Dr. Osei Bonsu, DO, (currently an Internist in Galax, VA), was his name—and he held my hand and gave it a squeeze.
Now, back to planing my vegetable garden for spring planting….just a few months away.