A Crohn’s Disease Story

I was hospitalized for three weeks in May of 2006 for a dangerous bowel obstruction due to a flare up of Crohn’s disease. They removed my entire Sigmoid colon, terminal ileum, and secum. I was in Brattleboro Memorial Hospital and Dartmouth Hitchcock Medical Center for a total of 3 weeks. I began to experience the illness in April of that year, but had been diagnosed with the incurable disease, Crohn’s, many years before.

I was admitted to Dartmouth Hitchcock Medical Center on Monday, May 22, 2006 with a partial bowel obstruction. I was very sick when I was admitted. They almost put a nasal/gastric tube down my nose to try to help relieve the increasing pressure on my bowel and the risk of perforation was high. As I lay on the gurney, listless and lethargic, my husband ushered in residents, doctors, surgical teams, nurses, and medical students. I guess my bowel sounds were becoming legendary in the Dartmouth Hitchcock ER. My distended belly was swollen to that of a 5-month pregnant woman—the only simile I can think of was that it was like a basketball!

Just trying to lift my head off the pillow seems like such an effort: I was too tired to care about brushing my teeth, or reading the magazine on my bedside table. I had been in bed on and off for two weeks straight. The pain in my belly had progressed from intermittent spasms, to a dull roar. It was finally ‘banding’ across the top of my belly like a snake. Steve called it the ‘alien’ and it did indeed seem to have a life of its own. The noises were almost comic! The rumblings and gurgling of my belly (which is something many Crohn’s sufferers know about) are often embarrassing. People say things like, “You must be hungry!”

This is called borborygmus, the “rumble” or “growl” sometimes heard from the stomach, and is a normal part of digestion. It originates in the stomach or upper part of the small intestine as muscles contract to move food and digestive juices down the gastrointestinal tract. Rumbles may also occur when there is incomplete digestion of food that can lead to excess gas in the intestine. In humans this can be due to incomplete digestion of carbohydrate-containing foods including milk and other dairy products (lactose intolerance), gluten (protein in wheat, oats, barley, and rye) (celiac disease), fruits, vegetables, beans, legumes, and high-fiber whole grains. In rare instances excessive abdominal noise may be a sign of digestive disease, especially when accompanied by abdominal bloating, abdominal pain, diarrhea or constipation.

One of my doctors on the GI team said my lab tests were extremely good for someone as sick as I was. My importantly, he said I was “very well-informed” about Crohn’s disease, and that I didn’t have a lot of corollary symptoms like mouth sores, infected eyes, etc. that frequently flare up when the body’s immune defenses are weakened. As he took my medical history, he was amazed to hear that I wasn’t on any medications for my disease that was diagnosed in 2001, nor had I ever taken any steroids to help with flare-ups in the past.

I remembered when I was first diagnosed, five years earlier and the decisions I made to follow a non-Western medical path. It is a path that has certainly been transformative, though not without pain or problems; it is a path that I would readily travel again.

What amazes me about this episode is that I had forgotten how horrible it is to have a bowel obstruction. The first and only other one I had was five years earlier . . .

I was 45. We have three kids and my husband was taking a yearlong leave of absence from his college teaching job to build our house himself and with a small crew. I was financially responsible for our young family during that time and very focused on starting my business—a small graphic design and consulting firm that specializes in book publishing design and packaging.

Buying land and building our house had long been a dream for us. Steve and I had planned this phase for a year beforehand and we were finally doing it. The year was obviously a stressful one for us all, but exciting. By December 2000, we were moved in and things began to get back to normal. In the spring of 2001, I injured both my knees playing on a women’s softball team. I had surgery in July. In September, I began teaching a college course in Graphic Design and was busy getting kids ready for school. We were still finishing our new house and the stress level was high. I began to throw up over the weekend, and by September 9th, 2001, I was quite sick and not able to keep any food or water down. I called my doctor Sunday night and she said to get to the emergency room as quickly as possible.

My husband had to carry me out the door and our then twelve-year-old daughter, Emma, asked if this was going to be fatal. I had never realized that the kids were actually paying that much attention to me, and what was happening to me. We had to leave them in the care of our neighbor for the evening.

This was in September of 2001, when I was admitted to our small-town hospital. It was a Sunday evening and the place was crowded. I was put in a bed and noted that my roommate had a perforated bowel due to a colonoscopy that had gone wrong—not a good sign! I was feeling tired, scared, and alone – all too frequent situations I am afraid, for sufferers of Crohn’s disease and ulcerative colitis. My potassium was depleted, among other vital nutrients, which is a typical problem from which IBD patients suffer from.

A nurse came in and started an I.V. I was in a tremendous amount of pain and scared, which only added to my cycle of pain and tension. The nurse was probably bummed out that it was 10:00 p.m., and she had to administer an I.V. right when her shift was ending. She had a hard time with it, due to my dehydration. When the tube was in, I immediately complained of “ burning” and “pain.” She rolled her eyes, and looked at my husband conspiratorially, and said, “She’s just tired, don’t worry!” And with that she left and my husband went home to be with our children. I lay in the bed, moaning. The pain progressed up my arm and I buzzed the nurse. My nurse came back in and she huffed and puffed and then administered a bit of lidocane to help with the pain. I cried and begged her to get her supervisor and when the supervisor came, she immediately took out the tube and put on in the other arm and I slept like a baby.

During my stay at the hospital, they gave me fluids and potassium to balance the electrolytes lost due to vomiting. The surgeon put me on a program called “bowel rest,” whereby the patient receives nothing at all from the mouth; only ice chips, until things settle down. It worked quite well and they said I could go home on Tuesday morning.

I remember being taken down to X-ray early Tuesday at around 7:30. The X-ray was just to determine if the pockets of air in my small bowel had continued to abate, which would further justify releasing me along with the joyous occasion of flatulence (the passing of gas) which would further bolster my case. I did not want to have surgery. Most of all, I wanted the oatmeal that the nurses had promised me after my X-ray.

I was returned to my room. Upon my bed sat my surgeon, Dr. Gregory Gadowski, wearing his white hospital robe and looking strangely undignified. I thought how odd it was to see this surgeon sitting atop my covers, and I felt embarrassed that my bed wasn’t properly made. As I drew closer, I noticed that he was starting up at the TV screen with what looked like a tear coming down the side of his cheek.

He was watching the Twin Towers being attacked on live television. It was 9/11.

The entire hospital, which is within 10 miles of a nuclear power plant, was in evacuation/hazmat/emergency mode. No one even looked into my room to check on me that entire morning. Not knowing how to change the controls on my television, I sat in my bed watching the airplanes hit the towers over and over.

Later that week, a CAT scan revealed that I indeed had Crohn’s disease and I ended up writing a journal which turned into a book, as a way for me to aid others who are either newly diagnosed with IBD, or have a loved one, or child with the disease. So, thanks to Adam and the feb162019ihaveuc.mystagingwebsite.com website for posting my story, and I hope it helps someone. These diseases can be fraught with pain, but also loneliness. now that I am in remission, I still remember what it was like to be sick every month–so I hope my story of turning my life around will help some people–I know it sounds kind of corny, but I really mean it. (Dede)

Living with Crohn’s & Colitis: A Comprehensive Naturopathic Guide for Complete Digestive Wellness—This is a new book Dede wrote about her experiences

5 thoughts on “A Crohn’s Disease Story”

  1. Wow that is some story and one I am going to keep to read occasionally when I’m feeling there can be no one feeling worse than me, which is silly of course. You certainly have suffered and my heart goes out to you. As for that nurse, with her attitude she’s in the wrong occupation. I have found some, very few fortunately, can be rather callous and have forgotten the core value of their profession, care and comfort of the patient, there is no excuse for her bad treatment. I found your explanation of tummy rumblings particularly interesting, now I will have a better understanding of what’s going on when I hear the ‘alien inside me’, which by coincidence is what I have referred to in the past when speaking to my doctor, strange that.

    911. Like all of us I remember exactly what I was doing when that crime was committed, sitting in my car at lunch time, taking a break because without realising it, the tiredness I kept getting at work was probably just one symptom of the condition I now suffer. I had the radio on when the first news flash came, the first plane had already hit and then in shock the second as it happened and knowing straight away that this was the start of something really bad. I remember rushing into the hospital where I worked, telling the girls on the reception and standing in a patients room with others staff, doctors and consultants watching the events live on tv. When the towers came down the whole hospital went silent, not its normal noisy, busy, lively self. All you could hear was the sound from patient rooms and reception area’s as reports came in live on tv from America. We all stood in silence, in a kind of numb shock, people obviously distressed. Being in the UK virtually everyone has friends and/or relations in the US so of course everyone was worried sick, not knowing what the future held in store and concerned for the people we knew, all America and ourselves. I know it had a really bad effect on me and it must have been about a week before I could get back into a normal sleeping pattern, sort of post distress I suppose, disturbed by the events we all saw live on tv. Now we have Afghanistan and everyday is news of British, American, Canadian and Dutch soldiers being killed, young men and occasionally women giving their lives so we can live in peace, whatever your thoughts about that particular conflict, they deserve our everlasting thanks and gratitude.

    I will definitely have a look at your book. Is it available in England, if not how can I get a copy from the US? If it is written as well as your comments here, I have no doubt it will be an interesting read

    1. Dear Tony, YOU are the one who is a good writer! Wow, your story of 911 and being in the hospital was gripping. I can’t tell you how nice it was to get a comment on my first post–I was really nervous; but Adam is so inspirational putting himself out there (right, Adam?!), and I thought why now tell my own story here.

      My friend who is a nurse has her own “bad IV” story, too. When I went to have my IV before my bowel resection, it was like 5:00 AM and the person did a bad job and I was so stressed before this major operation! The next person they brought in (at Dartmouth) aced it. So, the IV thing is a drag for us IBD patients. During past flares, when I got dehydrated, I had to go to hospital a number of times, usually the ER, to get fluids–my heart always started pounded when they went to get the “kit.”

      Hope to stay in touch — this site is so awesome; again, when I was diagnosed, back in the late ’90s, early 2001, there weren’t even proper gluten-free foods to buy! I had to buy my own almonds and grind my own flour! Now, following the SCD is much easier.

      Oh, I will call Random House tomorrow and see if the book is available across the pond–my mom’s cousin in England was just asking me the same. The feedback has been tremendous, and that is gratifying.

  2. Many thanks for the compliment Dede, don’t get many of them nowadays. Funny isn’t it we all think, well me anyway, that no one can be suffering more than us and then we read about someone who most obviously is and it brings us down to earth again, that’s a good thing I think. Yes this site is wonderful and a great help, I’ve learnt more here than anywhere else and Adam most certainly deserves our praise. I will look forward to the info about your book and will most definitely buy, hope to be in the US sometime in January so if I can’t get it here before then will get a copy whilst there. Now that brings up a query, how do people cope with flying and UC?

    1. Hey Tony, how are you doing? Can I send you a book? I wonder if you can even get it in the UK. Are you coming to visit or for a touristy trip? You should come to Vermont and try skiing! (That is where I live on a dirt road with my family)…. So, coping with flying and IBD. Aha! A good idea for a post.

      I could not go on family vacations during my worst flare-up periods in the early 2001-06 period. Now, I can travel (!), so I am generally very excited–if only I had the money to spend on travel! I am going to Haiti maybe in Feb to help with an orphanage there and co-lead a group of students… Just read of bad cholera outbreak there. Gives me pause about travel to a country that has bad water.

      But, if you are going somewhere like the US water should not be a problem (I did get a parasite from the Vermont river near my home!), and you can take a travel kit with you. Okay, I am sounding like such a nerd, but I once had an embarrassment on an airplane and never again! Bring plastic bag and a change of underwear, in other words!

      Bring probiotic powder, or capsules, flax seed (keep it frozen so it doesn’t spoil and make you sick!), water–airplane travel requires you dump the water before security but you can refill after (I always travel with my aluminum bottle), bring healthy snacks, SCD-approved, like almonds. WATER–as much as you can, and try to get a lot of rest. Airplane travel is hard on the system and messes up our diurnal rhythms.

      Do you have any other suggestions before we go public with our “Travel Post” ? : )

      Maybe Adam can publish it!

      1. Hi Dede, I’m not doing too bad thanks and trust you are well too.

        Its very kind of you to offer to send the book, I don’t know if there is some way we can exchange email directly to enable us to exchange address, perhaps Adam could help. If we can do that I would send you the money to purchase the book. I was hoping originally to visit friends in New Zealand for Christmas and stay for 3 or 4 days in the US either going or coming back to the UK but because of this UC have had to change my plans. I have a consultant appointment on December 31st by which time my course of steroids should be finished, fingers crossed I will be okay and okay to travel in January. I stayed in Santa Monica last year and fell in love with the place, had I been better I would have had a week there last month but unfortunately it was not to be.

        Skiing and me don’t really mix, I tried it a few years ago in Norway and nearly broke my neck and that was just getting on and off those peculiar bum lifts but I must admit I really enjoyed the off Piste entertainment, so perhaps Vermont would make a nice recreational visit. A long plane flight does worry me a bit, it never use to but now with what we have you really have to consider all eventualities and how you would cope with them. I will take your advice and kit myself out accordingly but still hope and pray nothing happens. I did have a nightmare situation flying to Singapore last year, as soon as the plane took off a nose bleed started and I don’t normally get nose bleeds. It was awful, almost 13 hours of trying to stem the flow, by the time we landed I was absolutely worn out and ended up in Raffles Hospital, bear in mind this was when the whole world was going mad over Swine Flu, people avoided me like the plague :-) and what happened when I got to Australia, yea I got Swine Flu.

        Funny thing that Swine Flu, everyone went pear shaped and crazy over it yet I was in Northern Ireland last week where it has been locally reported two people have been diagnosed with guess what ‘Swine Flu’ but its not been reported on the national UK news, strange that don’t you think, perhaps they don’t want to start a panic or perhaps they realise they went way over the top last time.

        A ‘Travel Post’ sounds a good idea to me, I’m sure lots of UC suffers would be glad of the advice and other peoples experiences to give them the confidence to do something they might otherwise put off, good idea.

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.