Our Journey Through Ulcerative Colitis
by Kim Conolly
by Kim Conolly
My title is our story and our testimony. We believe. We journey through to come out on the other side. God is guide and healer.
This is a record of a journey we are still taking. It's not medical advice, but experience, opinion, and lessons learned. Some days are clear, like our valley in the sun, and some days are as murky as Oregon's never ceasing rain. We are still learning, growing, and hoping. We are still healing. I have mixed our story with our new medical knowledge. It's epic, but so too is the journey. In researching UC, I rarely found articles that mixed medicine and real moments. This is my attempt.
FIRST, before you decide you have Inflammatory Bowel Disease or food allergies, consider infection, whether bacterial or viral. Current research believes that up to 25% of Inflammatory Bowel Disease cases arise due to infection that goes untreated or unconsidered. The Crohns and Colitis Foundation of America (CCFA) states that 1.4 million Americans are affected with Crohn's (small and large intestines) or Ulcerative Colitis (large intestine only). Those struggling with IBD in the United States account for about .04% of the population. This is a tiny population, but very real people who struggle with very big issues.
Remember, we know current research believes that it's likely that 25% of IBD patients with bowel disease begin with exposure to some kind of infection. While .04% patients is a number so small, we are unlikely to pay attention to it, 25% infection should get our attention. Where could this infection come from and how does it present initially?
Water borne illness symptoms can very closely match IBD symptoms. Further, we know that about 20% of the world's population will at some time be effected by water borne illness. Even in the United States, water safety is increasingly compromised. More and more, we are inundated with toxins and chemicals in our environment and exposure to toxins in our water. Talk to your primary doctor about the potential for water borne illness and run the tests. Even if the tests come back negative for parasites, don't dismiss the idea that a water borne illness may be in play. 75% of samples for water born illness, your stool samples, will come back with a false negative.
Don't accept a Crohn's or Colitis diagnosis until you've ruled out the possibility of an infection. The treatments are vastly different. That may mean you run a course of anti-protozoals first, in order to see what happens.
However, you should know that anti-protozoals may compromise your immune and gut system even more. They are going to wipe out your good “gut” bugs along with attempting to wipe out the “bad” bugs. Yet, I believe the risk of infection, at 25%, is too high not to consider protozoans, and to do so first, not last.
Our story begins, right after a fully loaded candy coated Christmas in 2013. Out of town on a five day work project, we were in a US port city that gets global exposure with visitors, military personnel, and container ships. Our kids swam in the hotel's salt water pool, and my daughter believes she has gills and was ingesting much water. In addition, her brother knocked out a tooth on the trip. Therefore, we made a trip to the local emergency room and a local emergency dentist. We were surrounded by bugs, germs, and all kinds of exposure to infection with tired holiday bodies fully loaded and candy coated. We were primed for bad bugs to take over.
No one can remember if she was sick before our arrival home, or if she became sick after our return home, but sick she became. The diarrhea began and wouldn't stop. She experienced 2-3 bouts of diarrhea daily. We proceeded to visit her primary care doctor and began pulling dairy and glutens out of her diet, but no one considered infection. The diarrhea continued into February, but then subsided for about two weeks when we pulled both dairy and glutens at the same time. We thought “ah ha” the diet change is helping.
She went right back to struggling within a short amount of time. Then spring break arrived, and she got a bit better. We thought, since she's out of school for spring break for 2 weeks, this must be about stress and changing her diet is helping. Her first day back to school the diarrhea began again. Now, we really thought school was the culprit, or at least part of it. We kept chasing stuff, even our own tails, but we weren't chasing the idea of an infection. Yet, looking back now, I wonder: When we pulled both dairy and glutens at the same time, did we briefly starve some kind of bug or parasite?
As she was still struggling, we ran our annual water test early. On a shallow well, we treat our water with ultraviolet (UV) treatment and run yearly tests; it's always been fine. We took samples to the Water Lab and they suggested we test for Cryptosporidium, which can get through both chlorine treatment (municipalities) and also UV treatment. I listened.
Water borne illness moved up the list.
Then, I called Peace Health Labs. A very large PNW regional lab, they process many samples from hospitals in the PNW. Their microbiologist gave me a list of parasites we should be looking for and to test in our daughter. She made it clear there are serious limits to the accuracy and effectiveness of our current test protocols and procedures in identifying water borne illness, and a water borne illness often requires multiple stool testing to get a positive result. Further, you may never get a positive test, but that doesn't mean you can rule out a water borne illness. Parasites are hard to nail down. Here's why. (The squeamish may want to skip.)
A doctor orders testing for one or many parasites and the patient submits a stool sample or samples. Those samples will be about 1/8th of a teaspoon to ¼ of a teaspoon from what might be cups of diarrhea. The sample is put in a tiny vial containing a preserving solution, and is shipped off to the lab. They spin your sample down to the size of a button and place it on a microscopic slide then look for a parasite on that slide. A lab tech looking for a parasite for over an hour may never see anything. Tiny, tiny bugs evade detection easily. 75% of parasite tests return a false negative! We have a long way to go with our diagnostics regarding water borne illnesses. Those are the breaks, but there's new stuff on the horizon....
The PCR (polymerase chain reaction) test is today's most accurate test and where science is headed, but not all labs are utilizing this test - yet. One can do a PCR (Polymerase Chain Reaction) test with the CDC, Kaiser Permanente, and OHSU in Oregon, but Doernbecher, Oregon's children's hospital does not offer it.
If you're an adult patient at OHSU, they will send your sample out to Kaiser if your doctor orders a PCR test, but if you're a child patient at Doernbecher, tough luck. Why should you ask for the PCR test? The PCR test is more accurate because it goes looking for both a live bug and also its waste products. There are more components of the parasite which the test seeks to identify. Even if no living specimen of a parasite were still alive in the sample, you might be able to identify a parasite by its waste product or DNA. This is what the PCR test does.
With encouragement from Peace Health Labs and the Water Lab, I focused my research more and more on infection, all while our daughter struggled daily with diarrhea and trying to go about her life and attend school. At night, her gut rumbled. I could hear the water sloshing noisily through what seemed like half filled pipes, leaky pipes. I wanted answers.
I spent much of each day looking for them. Increasingly, I became convinced a parasite was at work, and I contacted a professor at the School of Pharmacology at Oregon State University who specialized in infectious disease medicine. While being very careful not to give me “advice”, he suggested we consider Nitazoxanide if we really believed parasitic infection was the issue. Infection was now high on our radar.
(Nitazoxanide is an anti-protozal which has the side effect of being an anti-inflammatory. It's a great medicine to try.)
Besides Nitazoxanide, I was looking into a variety of products. I considered Eliminies for Children, but her GI system was so compromised we didn't want to experiment.
That said, in Eastern cultures parasites are often treated with herbs over a long time. DO NOT go this route, especially if you have a sick child, without the guidance from a qualified GI or naturopathic doctor. Herbs can be dangerous if you are not under the supervision of a doctor.
So we prayed, and researched, and prayed some more. By now it was April, and we were four months into this sickness, and I had list of parasites I wanted her doctor to test for, and I wanted to test her multiple times. I also had lists of medicines that might be helpful, and yet at the same time, we were not ruling out possible allergies, foods, or stress, or a combination of all. Four months in, no one had uttered the words Inflammatory Bowel Disease. Yet. We walked forward blindly, as best we could.
Later on we would come to realize that infection inflamed, left untamed, sets off the body's auto-immune response system - which then turns the body to fighting itself with on-set of any number of auto-immune diseases.
We would also come to learn that the gut is one cell layer thick - it does not take much for the gut to become compromised and for undigested food to pass through the gut cell wall, enter the body, and the body to say, "What in the world are you!!!" So begins the fight of the body against itself.
As for stress, we were all going through enormous amounts, I would later learn that while IBD can be exacerbated by stress, it's not caused by stress. However, stress can cause an existing IBD condition to become more challenged. We certainly witnessed first hand that when you have diarrhea for months, stress becomes a real factor, even for other members of the family, but stress did not begin an IBD issue in her life.
It was now mid-April and at the family doctor once more, she had gone back downhill after 2 good weeks of less diarrhea over spring break. As a result, we decided it was time to move to a GI doctor at Doernbecher. I deeply regret we did not move much more quickly to a specialist or ask for anti-protozals with our general practitioner. We have a wonderful family doctor, but we should have moved sooner, tested sooner, and acted faster because infection left unchecked turns on auto-immune responses and leads to IBD, and other illnesses.
As the diarrhea was ever constant, we made sure to keep up a vitamin regime with products like Vivonex, and I was adding coconut oil, olive oil, and butter to everything she ate to keep her weight up.
Before our visit at Doernbecher parasite tests were run. They came back negative. I didn't care, and truthfully, I didn't believe them. Infection was a huge concern for us at this point.
We also ran a celiac test, but prepping for her first celiac test no one told us our daughter needed to be on glutens for 6 weeks in order to take the test. It came back negative. Of course it did - she had no glutens in her system. We added glutens back to her diet, and roughly 6 weeks later we re-did a celiac test at Doernbecher. It also came back negative. We believed it. She'd never had issues with glutens before the end of December. While you can become a celiac quickly, it's unlikely, and many would tell you that celiac testing is not reliable.
By the time we were able to meet with a Doernbecher Pediatric GI, it was mid-May. We had submitted a Calprotectin test for our child upon the request of the doctor. The Calprotectin test is an infection/inflammatory marker test. Her results said, “infection.” On the day of our appointment, I went in wanting Nitazoxanide ordered. I wanted to rule out infection. I wanted to see what happened on an anti-protozoal. In her whole life, she'd only had about about two rounds of antibiotics. I felt they were worth the risk. We begged for Nitazoxanide. The doctor was skeptical of infection but consented and ordered the anti-protozoal the OSU pharmacologist had suggested - Nitazoxanide.
They drew blood the same day at Doernbecher. Her blood tests were off a bit, but not by much, considering the months and months of diarrhea. (We kept the vitamins and the butter coming.)
As for the Nitazoxanide, she took a 3 day dose which is standard and in the amount appropriate for someone her age and size, and nothing happened – at first. But five days after her last dose of Nitazoxanide the diarrhea stopped. It was late May. She had the first normal bowel movements she had seen in months. She had a great five days and then she began sliding downhill back into the diarrhea. We were elated and then devastated. The doctor shook her head. What just happened? None of us knew. Doernbecher wanted an endoscopy, colonscopy, and MRI with barium for the upper GI tract, which all together cost about $15,000.
It was now nearing June. We were hesitant to put her through those procedures. What had just happened with the medicine? Had Nitazoxanide just taken a whack at a parasite and the parasite won? We didn't know, but we were still pursuing everything. Anything.
We wanted more Nitazoxanide. Parasites almost always take more than one dose of medicine, and can even require several medicines working in conjunction with one another. Remember, Western medicine treats parasites with Western medicines for a few days, and Eastern medicine treats parasites for over a month or two often with a mixture of several herbs. Why? You have to kill every stage of the bug, not just one.
We kept begging for Nitazoxanide and putting off procedures and the doctor relented. We did a second round of Nitazoxanide. But wait, it wasn't quite the same. I watched the pharmacy technician mix the medicine, and just by looking at the bottle, I could tell the concentrate had been mixed with less distilled water this time around. I decided not to worry about it, and to trust grace. She was going to get a stronger dose of the same medicine, and yes, sure enough, the bottle held only 5 doses instead of 6 given over 3 days. The results were the same.
After the first round of Nitazoxanide nothing happened, until day 5, then the diarrhea stopped. Bowel movements returned to normal. She had normal stool for seven days, and then slid right back downhill into diarrhea. We groaned, we prayed, and we begged for a referral to an infectious pediatric doctor. Given the results with the Nitazoxanide, given her exposure to germs and possible infection in December, given our shallow well and the risk of Cryptosporidium, and given what the Water Lab, Peace Health Labs, a Kaiser doctor, and what the OSU Professor of Infectious Pharmacology had said, we wanted to see an infectious doctor. The pediatric GI wouldn't give us one. I called another doctor.
The Head of the Pathology Lab at OHSU confirmed it could be infection and not to give up on that route quite yet. I begged for the more accurate PCR testing for parasites from Doernbecher. Kaiser said we can take the sample from you, but your doctor will have to order it. The Doernbecher doctor said the PCR test is a research test, not a test they will provide or ask for. We stalled on the colonscopy, endoscopy, and MRI, our child so young to go through surgery and anesthesia.
Still earlyish June, we called an Oregon MD trained by a Jesuit hospital, who is certified through an Integrative Medicine group. Integrative doctors are trained to look at the whole person, not just the symptoms. She listened. She affirmed our path. Specifically, we asked her to run our daughter through Biotek allergy testing. We wanted to rule out allergies. We wanted to do anything we could that was less invasive than an endoscopy, MRI, and colonoscopy for one who was only eleven years old.
Biotek is one of two allergy testing companies that generally get good reviews in the medicine world by naturopathic doctors. Yet, the Doernbecher GI doctor made it clear she wouldn't put any stock in allergy testing or the results.
Allergy testing does have a long way to go in accuracy, but it's another tool. And we wanted every tool in our tool belt. If we were going to max out our insurance plan in 2014, we wanted to do everything possible to find answers. The allergy results took several weeks. We would not get them until nearly late July.
While we waited, we headed back to our family doctor for more parasite testing. We ran normal blood work. How was her body holding up? We ran more parasite tests. Before putting our daughter through invasive procedures we wanted to test by the book. The minimum number of tests is three for every parasite high on the watch list. We also ran another Calprotectin inflammatory marker test - could we put off the procedures a bit longer? The results showed us that her Calprotectin number had increased, but was still in the infectious range, not inflammation range, yet it was moving up the scale. We got more negative results on the parasites and her blood work was also still in the infectious range, not Ulcerative Colitis or IBD range.
Mid June, we talked, prayed, and decided it was time for procedures. We had two main reasons for moving forward. First, her Calprotectin numbers were moving higher towards results speaking to inflammation, and two, we wanted to rule out any growths or cancer in her bowels/intestines. We scheduled the tests and waited for the date, which was another several weeks out.
I will say, that at this point we were trying to work well with her Doernbecher doctor, but we were frustrated. I'm sure she was with us as well. While we had informed her of the allergy testing we ran in June, we didn't inform her of our visit back to our family doctor for additional blood work, metabolic testing, Calprotectin testing, and parasite testing. We had no desire to create animosity, but we didn't feel well listened to, or that we were on the same team. She wouldn't let us talk to an infectious doctor. If we could have switched doctors, we would have. Yet we knew to switch now could delay procedures and help by a few months. We were now convinced it was appropriate to do more invasive testing, and we didn't want to push out testing further in order to get in another doctor's que.
Her tests were scheduled for mid-July. God was gracious; they let me go with her into surgery. The anesthesiologist was awesome. After surgery, we met briefly with the doctor while she was in recovery. Two things were clear: She was going to diagnosis Ulcerative Colitis, but at the same time she wasn't going to give us one ounce of information from the procedure without our daughter present. It was very clear, the Doernbecher doctor felt she had hesitant parents on board, and she wanted “buy-in” for the diagnosis she was about to make. She wanted us all on the same page - her page. We were frustrated. Even though we were the parents, no information would be forthcoming without the child present. We felt controlled. Official results would be available within a week. We would have to come back with our daughter in tow to know anything at all.
In the mean time, due to the inflammation seen during surgery, the doctor prescribed Predisone. We knew this was a possibility, and we were concerned about the side effects of Predisone, but it was time to get the inflammation under control. If infection was/had been the issue, we were going to have to trust that the 2 rounds of Nitazoxanide had taken care of it. Now, her body needed help in healing.
The pyramid below shows medicines commonly used for IBD treatment which have fewer side effects (the base) up to extreme treatments and extreme medicines which come with extreme side effects (the top). At the end of this article, are links to IBD drug information.
She began Predisone, and we bought Theodore Bayless' Advanced Therapy in Inflammatory Bowel Disease Edition 3 Ulcerative Colitis published by John Hopkins University. Bayless' textbook is filled with all the latest research studies on Ulcerative Colitis, and they have a textbook as well for Crohn's. We began reading by daylight and flashlight.
Waiting for the results for a week felt like forever, at the same time her allergy test results came back. We pulled chicken, eggs, peanuts, and stone fruits from her diet. The MD who ran the allergy tests didn't think she was allergic to these foods, but it was clear that her gut was extremely challenged and needed to rest. She recommended FODMAP for 3 months. We began FODMAP (from Stanford) which removes dairy with lactose, gluten, and a few other products. (We'd added both dairy and glutens back into her diet probably in early June - since it didn't seem to make a difference and the Doernbecher doctor did not feel diet made a difference.
The Doernbecher doctor recommended our daughter eat whatever she wanted, unless it bothered her. In the doctor's opinion, diet played little to no part in Ulcerative Colitis. She could eat what she wanted, as long as it didn't bother her. It was yet another treatment perspective in which we would come to differ wildly in opinion.
Late July arrived and we met with Doernbecher. We took notes in notebooks. The doctor said she had severe, acute, and chronic ulcerative colitis. It would be for life. We asked many questions, and we left considering the addition of Pentasa, also known as mesalamine, (also an anti-inflammatory) which the doctor wanted her to begin along with the Predisone. We prayed for wisdom.
A few days later we called to confirm we wanted to start the Pentasa. There was a misunderstanding in the dosage to be taken. We had written 1,000 mg a day down in our notebooks, but the doctor called in a 2,000 mg/day prescription. On vacation and away from our home pharmacy, the dispensing pharmacy told us they had 3 days at the dosage the doctor wanted, or 6 days at the dosage we heard the doctor say and had written down.
Headed out for camping in a remote area, we started her at the lower dosage of Pentasa (1,000 mg a day) in order to make it last the entire time we were gone. The Predisone, Pentasa, and FODMAP diet kicked in and within a few days she began to have normal bowel movements. We were thrilled. We breathed a sigh of relief.
Up to this point, I had not started her on probiotics. Not knowing enough about them, I had been concerned starting her on probiotics; I thought they would feed any “bad” bugs in her system and make her worse.
We now felt it was the time to start them. Through the Integrative Medicine MD, we bought Klaire Labs Ther-biotic Complete and she began taking a probiotic each day with 25 billion good bacteria. In retrospect, we should have begun medical grade probiotics earlier. Their potential helps overcome their potential hindrances, and good probiotics are needed by everyone.
Do know the viability of probiotics will decrease if left at room temperature. Further, some products on the market such as Digestive Advantage are not the same as a quality medical grade probiotic. (Resources below list some.) I talked to several health food stores in the valley, to find out who was taking what, what was popular, what seemed to work, and in the end, we went with what the MD recommended. We wanted good research for our daughter. We didn't want to make her a guinea pig - it's a very fine line.
Still working through Advanced Therapy in Inflammatory Bowel Disease by John Hopkins, what stood out from the research studies was that quality probiotics make a difference. Studies show that patients for whom traditional medicines like Predisone quit working (and it very much can quit working), probiotics can potentially help enormously. In fact, up to 65% of them stay in “flare” remission with excellent probiotics.
These studies make a strong case for quality probiotics. Bayless' textbook is filled with study after study of probiotics making a difference. I told our daughter “I don't have to remember all the names of all the strains of bacteria, or each study, to understand that probiotics are making a difference for a lot of people.” Further, combining probiotics with a diet low in inflammatory foods allows the body to heal. As I shared, we landed on FODMAP. It carves a path for healing without being as extreme as the Specific Carbohydrate Diet, but we would go on to do SCD later.
Eight months after the onset of her symptoms, into the fall of 2014, we were not on the same page with the doctor regarding the dosage of her Pentasa. We had heard and written down 1,000 mg a day in the post surgery visit, but what the doctor really wanted and called in was 2,000 mg a day. The dosage discussion would continue to repeat several times during August and September with nursing staff at Doernbecher and the doctor. It was stressful. The patient was doing really well on 1,000 mg a day of Pentasa with no flares, no diarrhea, and no symptoms along with the FODMAP diet, and she had been fully weaned from the Predisone. “Why change that?” we challenged.
We were doing our research including reading medical textbooks, but it didn't feel like it mattered. We were to take the level of medicine ordered vs. what was working for our child. Doernbecher offered us a diagnosis, and in the end it would be extreme, but also a clinical by the textbook treatment, not a research approach, nor an individualized approach to treatment. In a field that is changing daily, you want your doctor accessing and using the most up to date research possible. We would learn to go with our gut.
We kept her on 1,000 mg of Pentasa up through December of 2015 with no issues, but one possible flare in November of 2014 - which I will get to. By the end of August 2014, she was weaned off Predisone, and due to our increasing frustration and constant struggle with Doernbecher we decided to move care elsewhere. We needed a second opinion. If she truly was going to have Ulcerative Colitis for the rest of her life, we needed to hear it from another doctor at a research hospital.
Our experience with Doernbecher's pediatric GI department was one battle after another: in diagnosis - no chance for healing ever came or was spoken from them, in flexibility - none whatsoever - even though lower med dosages were working, and in diet perspective - simply keep a journal, and eat whatever you want, but if it bothers you, stop.
Yet, current research says the Specific Carbohydrate Diet (SCD) can help; diet does make a difference. We got the same line over and over regarding diet at Doernbecher: “Do what you want.” Regarding supplements such as fish oil or probiotics, “Some of my patients take them, I have no opinion on the matter.”
Doernbecher doesn't yet know how to recommend only what they know. They don't seem to get behind the latest research - at least the doctor we saw. There was no sense in Portland that the patient plays a part in their healing. And by now, you have figured out that it's all in the details at our house. There was not one thing we wanted to discount or discredit as either an option for healing or what was causing the hurting. We are/were responsible to stand in the gap for this incredibly loved small person God has blessed us with – we are accountable not only to God, but to her – to show her we would go to bat for her, no matter the cost. She was not a case study nor a generalization.
Back at our family doctor, we requested a referral north to Seattle Children's. Thankfully, insurance approved it, since we are out of region. Ironically, the Jesuit trained MD we had used for allergy testing had also recommended Seattle Children's in our June visit with her. Now that the diarrhea was under control, it was time to make a change. Things were about to look up, a lot!
In October of 2014 we had our first appointment with Seattle Children's IBD Center. If Ulcerative Colitis was something she was going to battle for life, we needed to hear it from another doctor. However, if it was not to be a lifetime diagnosis for her, we were confident we were now with a doctor who would leave room for healing, not just maintenance through medicine.
I will say, that Seattle Children's is not nearly as “high-tech” as Doernbecher in their computer systems. (I bet they are by now.) When we began with them in fall of 2014, I could not get test results on-line yet, nor see them and compare them to the textbook standard blood work numbers, but the doctor called within 2 hours of her first blood work. He called personally. Their top notch research was worth the 7 hour trip north. (It continues to be in February 2016).
A bit about Seattle Children's: they endorse the Specific Carbohydrate Diet, and are trying new therapies, like fecal transplants, and new medicines. The doctor listened for over an hour. He asked thoughtful questions. He wanted to know if we wanted in their SCD study. He validated that if the 1,000 mg a day dose of Pentasa was working, why change course. He agreed that given great blood work and normal stools, we could proceed with regular testing and talk about this being a one time event with the goal for full healing and possible remission in her life.
We would in a year, with a blood work history behind us, assess her health and whether continued medicine was necessary. (That is where we are at the time of my updating this journal in February 2016.) He confirmed he would not have diagnosed her with acute, severe, and chronic ulcerative colitis, but mild to moderate ulcerative colitis. When I mentioned bacterial infection as a possible cause, he challenged me, asking, “Why just bacterial, it could also have been a virus or some other type of infection which kicked it off.”
So after a great visit at Seattle, we headed into fall of 2014 with the 1,000 mg of Pentasa, probiotics, and FODMAP. I also began making smoothies with l'glutamine for gut renewal. L'glutamine helps the immune system recover and rebuilds the cells lining the gut.
I began making SCD yogurt for her instead of buying coconut milk yogurts, a massive money savings and much more probiotics in each cup of yogurt. I also added the occasional Vivonex shake into her diet. She had not grown one bit during the year, and had lost a lot of weight, and so we were making sure she got all the nutrients she needed.
A bit more on l'glutamine: there is evidence that l'glutamine is particularly helpful to kids with cancer who are receiving treatments on/near their guts. It helps protect and rebuild the gut wall, but the studies say there is less rebuilding/protection effect in adults. I'd use it anyway.
Again note, the cell layer of the gut wall is one layer thick – it doesn't take much for the gut to be compromised and undigested food to begin passing through the cell wall into the body. The body says, “What in the world is that!” and the auto-immune response kicks in. Keeping the gut wall healthy is vital to our immune health.
Fall passed. We home schooled that year to offer her body a break, and in December 2014 we approached a very stressful Lego Robotics tournament weekend. She had 2 loose stools in a row. Her brother had been sick beforehand. Coincidence? She was stressed. I immediately took her to the SCD diet and followed the diet with her – it's hard to give up all glutens when you are 11! She also took 2 additional Pentasa tabs on those 2 days for a total of 1500 mg each day for 2 days.
We survived the holidays with foods that worked for SCD, using lots of almond flour, eggs, cheese, protein, and yogurt. We were both a bit tired on this diet, but I lost weight, while she gained weight!
They SCD does that: those who need to lose, lose, and those who need to gain, gain. We did not follow SCD in terms of chocolate. She's always been allowed to have dairy-free dark dark chocolate in moderation and its not bothered her.
By mid-January of 2014 we slacked off SCD and moved more towards Paleo, allowing for sweet potatoes and oats back into the diet. By early summer, she was more towards FODMAP again, but I tried to keep her Paleo one meal a day with high protein and fruit, most often at breakfast, but she was back to her main meals including corn, rice, oats, and gluten free flours. I had also long before switched to coconut sugars, honey, and pure maple syrup. Today, I occasionally use refined sugar, but not often.
She was still taking a 1,000 mg a day of Pentasa, and no more. She rarely missed a pill, and was super good about taking them. A note about Pentasa for those new to the med: its an extended release cap the size of a horse pill. From her first day on the med, due to its size, she has broken them open and poured them down her throat. As it's a topical medicine, all along she's been getting even less than than the 1,000 mg a day because its efficacy is likely decreased, even if by a little, by the time it actually hits her large intestine. It was yet another reason we felt the diagnosis severe, acute, and chronic was too extreme - especially given the low dose she was on, and the class of drugs Pentasa falls within, is the lowest in the IBD pyramid of drugs.
Besides the Pentasa, her diet, probiotics, and the l'glutamine shakes, she took a teaspoon of Barlean's fish oil each day, a vitamin regime that included D3, a multi-gummy, iron gummy, and an occasional Vivonex shake. We don't eat a lot of red meat, so the iron tab was important.
As of February 2015, we were keeping things low carbohydrate still. She wasn't quite SCD, but wasn't fully FODMAP either. Blood work finally got squeezed out of her (that's a whole other story) in mid-January 2015 almost exactly one year from the onset of her sickness. Her blood work numbers looked great. Her C-Reactive Protein was normal. No sign of inflammation or elevated numbers. ESR (Sedimentation Rate) was an 11, and 1-10 is normal. Dr. Giefer saw it as a non-issue. Fighting a cold could bring that number up.
Meeting in February, we discussed food and encouraging SCD info. I learned that in treatment, they give priority to: clinical symptoms, ESR (sediment rate) & C-Reactive numbers, and then finally Calprotectin results.
Dr. Giefer tells me they are learning that Calprotectin can fluctuate throughout the day. They used to give it the same weight as ESR & C-Reactive, but no longer do, and her Calprotectin numbers may never go back to normal. They just don't know yet. He does not believe that means the tissues in the intestine are abnormal and/or a higher Calprotectin is likely to create a higher incidence of abnormal tissue.
He feels long term her prognosis is very good for a complete healing. She gained 4 lbs and grew an 1”. He's willing to talk about going off the Pentasa and experimenting, but mostly he's concerned about increased growth rates during adolescence. Anything that will keep normal growth and development is the priority, including medicine and SCD. All have agreed to see good labs a few more times before experimenting. We are ever thankful. This feels like dip five in a river of blood work grace.
As 2015 plugged along, we continued with FODMAP for some meals and SCD for some meals, or Paleo. We kept lactose out of her diet and traditional gluten flours. I will add, the whole house eats substantially closer to FODMAP these days. I rarely use gluten flours, but instead buy gluten free pancake and flour mixes in 25 lb bulk from Bob's Red Mill in Portland.
As fall of 2015 arrived, she had her blood work done again and her numbers again came back great, as had the summer blood work numbers. No doctor's trip to Seattle needed.
She did, during the summer, have 2 episodes of vomiting, but no diarrhea, after eating fish and chips at Rogue Ales, halibut both times. We wonder, if at age 12, she developed a fish allergy. She would be happy if it were so. No one wants to test it out any time soon, so we continue to wonder.
As of January 2016, she is still on 1,000 mg of Pentasa each day. Now due to significant weight gain and growth in height, this should be a dose that is less than ½ the normal dosage for a child her size. With time, we will see if appropriate to wean her off of them. She's had no major issues this past year, other than the fish and chips issues.
I will say, that since Christmas of 2015, she's much more iffy about taking her medicine. I ask her. I watch to see if she's taking them, but I do not enforce like a cop, and she seems to be exerting some authority in this situation to skip as she feels. When pressed, she will tell you she either takes her 2 caplets each day, or misses them entirely. I know this to be true based on the prescription bottle and how full it is. Trying to walk the balance of mother love and mother cop.
She came through the 2015 holiday season, Thanksgiving to New Year, healthy with no bouts of inflammation or diarrhea. No vomiting. She ate white flour glutens several times a week (very small portions) during the holiday season, but enough to make me really nervous, and once or twice a week a small serving of something with dairy which contained lactose. Ack! But, what a different day time meal course than SCD last holiday season!
It is getting harder and harder, as she becomes a teenager to patrol the food, and I don't want to be a food cop. We keep what is healthy in the house, but the holidays were challenging. I felt like I was always on her to have 1 gluten free cookie, instead of 3. She is a picture of sassy health, but a tween, and wants to hang out, sleep, or read as much as possible. She did however shoot up for the sky like a giraffe in 2015 and is 5'2” having grown at least 8 inches this year!
She is by and large on FODMAP, but I try to keep breakfast high protein and SCD yogurt. She rarely takes probiotic tabs anymore (5 a month?) and those were lessened by her in the fall of 2015.
As a side note, I had switched her probiotics early in the summer of 2015 to Garden of Life's Colon Care, which has a good reputation and is more reasonably priced, especially when on sale at Market of Choice or a local health food store. She still eats the SCD yogurt most days a week, and if she doesn't want a yogurt on its own, I dump it into a smoothie.
I will say that today, I don't think we'll ever know the cause of why she became so sick. We'll never know if our daughter had an infection or parasite that was cleared by 2 rounds of Nitazoxanide, and after 7 months of diarrhea her system was simply so compromised she could not heal without additional anti-inflammation medicine.
We don't know if her own genetics held within them IBD triggers/markers/traits and something set them off. Science has a long way to go in understanding Inflammatory Bowel Disease, but doctors and scientists do believe more and more people are carrying within them the genetics that can lead to IBD - if those genes are triggered. Then there's always the possibility our food and what is in our food is making us sick:
Dietary Emulsifiers Impact Mice Guts (Nature)
Long term, we are continuing to do blood work every few months and assess her basic blood panel for inflammation markers. We head to Seattle asap for the new year's results. (They were great.)
Should be interesting given that it comes after the holiday season and her deleting some meds from her life. I struggle to lay down the worry and being the medicine/food police mom, but ultimately, this is a journey for her about learning to love herself and take care of herself. We all have a long way to go in that department.
We have learned so much. We are still learning. What I do know is follow your gut. Do your research and listen to your child, but follow your gut. Make sure you have an amazing family doctor that listens and is willing to be humble and try stuff, and make sure your GI doctor is the same, because so much of this gut stuff is a work in progress. We know so little. We have so much to learn.
As for IBD research, it's going the way of genes, immune system, and microbiome, but much is yet to be found. Mostly, know your child, or you, are in good hands. Find a doctor who is not threatened by your research and is willing to see you as a potential research subject, not just someone who needs to get behind his or her clinical diagnosis and take their prescribed treatment protocol. A clinical answer is a tiny answer, and rarely a holistic one.
I generally think Doernbecher wanted to do well by us. I have to believe that, but I don't think they knew how to think outside the box. We have a couple of people in our house, for whom every detail counts, who do their own research, and who want the most advanced research. That makes us as challenging as the patient in our house, but that's us.
We wanted a team approach and had to create that team. Initially, we felt we were swimming against the ocean, but we picked our battles carefully. We quietly did the testing we wanted with our own doctor on the side, without announcing it, to answer our own questions, and sought 2nd opinions and answers through doctors who were more open to questions. We don't fight against people, we fight for people.
To Young Moms and Dads:
While, our children have had little to no antibiotics in their lives, these days, I would use less Purell. Let them eat organic dirt. Just teasing, but not really :-) This journal is not medical advice but we have to build our children's resistance up, and not be so germ phobic. Further, I would make good quality probiotics a part of my child's life from a younger age, especially after a round of sickness, or during a round of sickness. A healthy biome is a happy biome.
As for our water...when you have gone through so much, you do all you can to drink good water. We continue to have amazing water test results, but now we've tested for all kinds of things like metals and such. Better safe than sorry. Know what you are drinking. Make sure it's safe. We've been fortunate and we continue to trust in grace and God, but I will never again look at water or guts in the same way! This issue is more and more becoming an issue - even here in the United States.
While we don't believe our house water was ever the issue, we upgraded our own treatment system to even higher filtering/treating capacity, and we installed an automatic shut off valve onto our water system. If treatment is compromised at all, the water shuts off.
What a pain, when the "control brain" went out this past December, but we didn't, unknowingly, drink untreated water as none came into the house until the treatment system got a new "brain."
What a pain, when the "control brain" went out this past December, but we didn't, unknowingly, drink untreated water as none came into the house until the treatment system got a new "brain."
Resources / Medicine Info
SCD Yogurt- so cheap to make, and so many probiotics!
VSL 3 medical grade probiotics - prescription
Garden of Life Colon Care Probiotics
Understanding IBD Medications
Treatment Medicines for IBD
The IBD Clinic
Healthy Digestion the Natural Way
As for GAPS? We did not use GAPS, but here's my take:
This is entirely my paraphrase: GAPS is the Specific Carbohydrate Diet as a certain cleansing regime or protocol. It eliminates ALOT of food for awhile - you live on broth for the most part! - to allow for healing, but then moves to what is very much SCD.
Blessings on your journey. May it be one filled with health and love.
*All typos, errors, and present/past tense issues are entirely mine. I live with my feet planted in two time zones, and sometimes three :-) Sometimes the words have jet lag and sometimes they zip ahead of me.
Copyright February 2016 Kim Conolly