I have been resisting doing this. I didn't want to blog about my misery. But ultimately I have concluded their are two good reasons to do so:
1. My experience documented may be helpful to others who "travel this path".
2. Someone with a sharper eye than mine, might catch something I have overlooked, which may help me.
So here goes.
This first post will review the history to present, and outline future plans as currently established.
26 June 2011 - Experienced Intestinal Flu or Intestinal Flu like symptoms.
10 July 2011 - Experienced Intestinal Flu or Intestinal Flu like symptoms.
24 July 2011 - Experienced Intestinal Flu or Intestinal Flu like symptoms. Followed by internal pain just above and left of belly button.
27 July 2011 - Office visit to r. Vera Carlsen. CT scan was ordered, to check appendix.
27 July 2011 -CT Scan: Appendix normal, but cysts observed in kidneys. Ultrasound recommended. By this time, my weight has dropped to 130. (I was 150).
29 July 2011 - Ultrasound: Presences of cysts confirmed, some identified as hydrocephalic (? I believe that is the term he used, though I can't find it in web searches. As I recall, the concern was that the cyst was a fluid fill blockage, which might be preventing kidney function). (Note: I had no bowel movement from 24 July, until today).
5 August 2011 - Bladder/Kidney exploratory operation. I was sedated, injected with dye, and my kidneys were scoped. Cysts were determined to NOT be a cause for concern. There was no blockage, and my kidneys were healthy and functioning properly.
10 August 2011 - Visit Gastroenterologist (Dr. Vikram Garg). Endoscopy was performed. This ruled Celiac out. A higher than normal level of stomach acid was observed and Prevacid was prescribed.
25 August 2011 - Colonoscopy - 2 Polyps were discovered and removed (benign), and Inflamation(ilieitis) was Observed. Dr. Garg made a preliminary diagnosis of Crohn's and Began treatment with Entecort.
1 September 2011 (approximate) - Prevacid discontinued after experiencing severe stomach muscle spasms as a side effect.
2 September 2011 (approximate)- I begin experiencing Random Join Muscle Pain, typically in Lower back, but also in Back, Hip, and Fingers.
8 September 2011 - Followup visit with Dr. Garg. Promethius test results are inconsistent with Crohn's. test has an accuracy of approximately 80% however, and based on the Joint/Muscle pain, which Dr. Garg concludes is traveling Arthritis (commonly occruring in Crohn's patients). The Diagnoses of Crohn's is retained.
? October 2011- 2nd Opinion with Dr. V. Duane Bohman. He concludes that although my symptoms are not precisely classic Crohn's, they are possibly Crohn's. By this time I am having regular bouts of the "traveling arthritis". It occurs more frequently in the early morning, but also occurs at other times of the day. I am also experiencing severe pain in my back, focused around my Kidney's, at approximately 5:00 am, and lasting for 2-3 hours. this occurs nearly every morning.
I began a restricted diet, based primarily on SCD diet, with some ideas from Paleo:
No Grains, Seeds, Nightshades, or White Potatoes. Proteins limited to poultry, eggs and fish. Calorie shortfall due to elimination of grains covered 40% by increase in protein, 60% by increase in fruits and vegetables. This seems to be more effective than the Entecort at controlling abdomen pain.
I tried a fish Oil supplement for Crohn's- No observed benefit.
Started a Glucosamine, Chondroitin, MSM, supplement for Joint pain - result is inconclusive.
? November 2011(early) - Meet with Rheumatologist - He indicates my arthritis is a clinical diagnosis, and no tests can be performed to verify. I research entercot and discover that Joint pain can be a Side effect, as well as Kidney pain.
10 November 2011 - Allergy skin tests for food allergies are performed. Result are negative.
14 November 2011 - Gluten sensitivity and Rheumatoid Blood tests are performed by Dr Carlsen. Results are negative.
22 November 2011 - I attempt to return to a normal diet. Symptoms worsen within 3 days. Restricted diet is resumed.
Early December 2011 - Call Dr. Garg to discuss (at least temporarily) going off Entecort, to determine whether pain is a side effect or a symptom. Dr. Garg says I can reduce dosage from 3 capsules daily to 2 daily, but he wants to meet with me to talk about reducing further. He is unavailable until January.
Mid December 2011 - Contact Dr. Bohman to discuss (at least temporarily) going off Entecort, to determine whether pain is a side effect or a symptom. He recommends staying at 2 capsules daily for 2 weeks, then reducing to 1 capsule daily for at least 2 weeks, then 1 capsule every other day for at least two weeks, then stop taking.Contact him two weeks after Entecort is fully stopped to review condition.
4 January 2012 - I am presently at a dose of 1 capsule daily. The Kidney is almost completely gone. The random joint/muscle pain seems to be significantly reduced as well, though more time is needed to confirm that.
I seem to be able to control abdomen issues with diet.
Breakfast is typically homemade turkey breakfast sausage, an egg, fruit (typically an orange, kiwi, or banana), yogurt, and milk (occasionally with a carnation instant breakfast).
Lunch and Dinner are a chunk of Protein (usually chicken, sometimes turkey, occasionally fish (I'd have it more often, but it is expensive)), 2 or three pieces of fruit, and a salad.
I am attempting to add other foods to my diet one at a time, by selecting and adding one new food each week and having it several times.
First attempt was pork, I had some problems at the end of the week, but I didn't follow the rules precisely (introduced other unapproved ingredients at the end), so I need to re-test.
Second was beef, this cause very unpleasant abdominal spasms within 2 hours of eating. No Beef.
This week I am trying a cream of wheat cereal, it appears to be okay. I missed my serving today, so I will need to go a few days longer to be certain.
The next few items I plan to try (still unsure of the order):
white rice, pork, legumes (beginning with red, pinto, and black beans), milkshakes (specifically as a calorie booster. I have had a couple at random points with no apparent adverse effects, but I have not thoroughly tested yet). white bread.
So at this point here is what I know about my health status:
Something is wrong with my digestive system. It hurt really bad for quite awhile, had(/has) inflammation, and had polyps. It still doesn't feel ... "right". I kinda feel like I have someone else's guts in my body. That the only way I know to describe it. It just doesn't feel quite right, I get little feeling of discomfort that I don't know what they mean.
I had Joint/Muscle/Kidney pain, but that appears to be primarily/entirely a side effect of the Entecort, rather than a symptom of a health problem. I should know this for certain, once I stop taking the Entecort (3 or 4 more weeks).
The possibilities for a diagnosis as I see them are:
1. I have Crohn's, but it is mild.
2. I have something similar to Crohn's:
(I have created a separate page on which to list and track possible alternative diagnosis).
3. I have something that is presently indistinguishable from Crohn's (example: they used to think Celiac and Gluten Sensitivity were the same thing. recently they have discovered biological/chemical differences).
4. I had some sort of one time event (inflammation), which in time, will completely clear up, and everything will return to normal.
So, that is where we are today.