Friday, July 26, 2019
So last weekend I splurged a little bit food wise. On Saturday night I went out to this burger place that I had not been to before and ordered a Kobe beef cheeseburger with some Parmesan fries (it was very delicious. About an hour or so after that I went to this dessert place and ordered a small brownie sundae (it had hot fudge on it too). Although the food was amazing and my stomach was quite expanded I was in the bathroom most of the night (very few loose bowel movements though).
For the past week I had some cramping in my stomach (more like distant cramping). Also this week at work I had a bunch of meetings and probably didn't the best sleep either which usually compounds the cramping issue. Last night I feel asleep around 10:30 P.M. and felt refreshed when I woke up. I most likely will be sleeping as much as possible this weekend to make up for some of the lost sleep during the week. As I write this right now I feel virtually no pain. I had been taking hot baths and using a cold ice pack during the week to mitigate some of the pain. The only other odd thing health wise that happened this week was I felt dizzy on Wednesday after work and had to lay down as I felt as if I was moving even though I was in the shower, walking, or laying down. I wrote a post on my vertigo issues last year and that experience.
This past week is a reminder to really appreciate every day I can live in remission with Crohn's and be thankful for what I have. Historically I have found eating light food, sleeping well, and not stressing out too much have been the keys to success. I know I will have up and downs with Crohn's but I am of the opinion that we should all constantly strive to feel better and have a better quality of life with this awful disease.
Saturday, July 6, 2019
So recently there was an individual case study (published in the journal of Nutrients). As I write this the study has been downloaded over 3,000 times. The article is called Crohn's Disease Remission with a Plant-Based Diet: A Case Report.
Back in November 2014 a 25 year old male patient had been losing weight for several months, had diarrhea and flu-like symptoms. In January 2015 the patient then took Remicade every 2 months. The treatment dose had to be increased by 50% since he wasn't showing a clinical response. The patient had symptoms that improved, however the patient did not achieve clinical remission. By March 2017 the patient had been on Remicade for 2 years and the patient was able to eliminate all processed foods and animal products during a 40 day religious holiday (this was most likely for Lent). The patient limited processed food/animal products to one serving/week. When the patient was strict and kept to the diet he didn't have any reported pain. In addition to this the patient was able to work out (weight-lift, run, and do yoga). What is very interesting is that after 6 months when a colonoscopy was performed there was no evidence of Crohn's disease!
Other studies have shown similar results when patients reduce the amount of meat in their diet. In this study over a 2 year period 94% of patients maintained remission when eating a semi-vegetarian diet. What surprised me was 73% of the patients were able to adhere to the diet. What is even more impressive is that 92% of the patients were able to adhere to the diet after a 2 year period.
In the past I have wrote about the specific carbohydrate diet (SCD). The diet eliminates carbohydrates, dairy, and sugar products as it believed that these foods cause inflammation. As I wrote in that post a study published in the Journal of Pediatric Gastroenterology showed that after 1 year of the SCD diet 85% of patients who remained on the diet were still in remission.This study from 2015 of 50 patients that stayed on the specific carbohydrate diet and 52% of patients who were in remissions were able to stop medications.
The evidence in the recent case study of a patient shows that diet can play a role in helping Crohn's. The only issue I see is that this is only one patient and it would be good to see more studies with many people. However, the studies with the SCD diets show that people do in fact improve. My own personal (non medical view) is that that these diets may help some individuals with their Crohn's. It would be worthwhile for the Crohn's and Colitis Foundations of America (CCFA) to fund research to study this area further since it often isn't looked at. Hopefully this can be studied further to lead to better recommendations and ultimately be used to help the pain and suffering many are in from both Crohn's and inflammatory bowel disease.
Saturday, June 29, 2019
I haven't posted in a while since I have been feeling pretty well. Overall, my Crohn's has been in really good shape. I was even able to travel to London to visit my sister during the last week of May. While in London however the place my family stayed at didn't have any air conditioning so the windows had to be opened every night. Most of my life I really never had allergies. However, when I was younger I had an isolated incident of asthma but rarely took allergy pills. Well while in London leaving the windows open every night and letting in all the pollen and other interesting things in the air led me to have to take Claritin of the week long trip.
My throat felt sore but I didn't have any other symptoms (not stuffed up, coughing, or anything else). When I got back to my states I saw my internist and she suggested I take an allergy pill and he prescribed an antibiotic just in case. He told me to take the allergy pills for a couple of days and if I still wasn't feeling well to take the antibiotic. To be proactive I started the probiotic a few days before I started the antibiotic just to be safe. Within a day of taking the antibiotic the tickle I had in my throat went away and I was back to feeling normal. I took the antibiotic as prescribed 2 times a day for 10 days and really didn't have any stomach issues. Some days I did feel just a tiny bit nauseated but didn't have any diarrhea or any loose bowel movements.
So last night I stayed up somewhat late (until about 1:30 A.M.) but as I was going to bed I felt some pain in my stomach. Sometimes there is a feeling of all this garbage in your stomach and it just has to get out. Well the garbage got out over the next hour or too. I did feel relieved after it was all done and just sat and laid on my bed looking at my iPad until I feel asleep. I woke up early and was a little tired but able to work out today (but not as much energy as I usually have). I plan to go to bed early tonight and maybe even sleep in tomorrow.
The only other compliant is I have seem to have gained some weight (I wasn't complaining when I was in the act of doing this). I weighed myself before today and came in around 165 lbs. For me I would feel comfortable being around 160 or so. The past few weeks at work have been super busy and I haven't been able to work out and have been kind of eating whatever. When I had a sore throat I was eating more ice cream in that week than I had ever eaten in many years (even had four scoops of ice cream-mix of chocolate and vanilla).
Overall, things are good for now. The Fourth of July is coming up soon and I will get a day off plus my work schedule will settle down some and hopefully I can get back to the gym more often.
Saturday, March 30, 2019
This past week was a little stressful. My grandmother of 98 years passed away. She lived in a nursing home for many years. My grandfather had lived with her up until he passed away in 2007 (he was born in 1921). Both lived a very good life and were kind and generous people. In my grandmother's later years she suffered from dementia. When she was in the nursing home me and my family would visit her weekly. However, over time her mental conditions deteriorated and she didn't recognize who we were. Grandma would have entertaining stories about her 5 husbands and what they did. This is a far cry from the grandmother that I knew growing up that would make me french toast, cakes, go on trips with, and have Sunday dinners with throughout the 1990's. Honestly, I think if my grandmother knew the kind of condition she was in she wouldn't want to live like that (but that is another topic for another day).
I found out my grandmother has passed on Wednesday night while I had just got done working out. Throughout the day I had been cramping (really more of the blunt stabbing pain with Crohn's) but it seemed to get worse Thursday and I felt tired. Friday I felt better and I got some pretty good sleep and today I feel pretty decent.
My workout routine is still going strong. I typically workout for 1 and half hours 3 times a week. My workout consists of free weights, strength exercises (biceps, triceps, etc), walking on the treadmill, and then I finish with the elliptical. Overall, I feel in pretty good shape. I at one point did have a personal trainer but feel I wasn't get the value out of that and they always do the exercises I wanted. Although, I would say I felt really sore after I was probably in the best shape ever of my life. Currently, I feel in good shape and may have loss a little of muscle mass but am quite happy with it. My weight is around 160 lbs (within the past few days it had reached 163). Feeling fit is always nice in terms of being able to fit into clothes and knowing every once in a while you can have a little extra to eat.
Overall, my health is quite well and I am always in awe of how successful my remission has been with Crohn's and how much of a miracle drug Humira has been. I am scheduled to see my gastro doc in May for a checkup (he books up months in advance!). The only thing I don't like is my gastro doc had his practice purchased my a large hospital. Before it was easier to schedule an appointment and I could talk to the nurse. These days I have go through someone else to do that. Also according to my internist my GI has more of a 9-5 job now that he works for a hospital and if he has a patient after hours someone else will admit the patient to the hospital. My internist is in a group practice and they have a younger GI that looks promising (however I wouldn't switch/also my GI is getting up in age and I could see him retiring within the next 10 years). All in all he has done a great job with me and I am grateful for where he has gotten me to.
Saturday, February 23, 2019
Well it has been a while since I have written a post (this is mainly because I have felt pretty well). Last evening, I had some loose bowel movements (this has been rare for me and I honestly can't remember the last time I had one). I wasn't alarmed at all as this from time to time. Honestly, if I ever have a non solid bowel movement it is the week before I take the Humira between a Thursday-Saturday.
Overall, though I don't feel too bad. Within the past 2 weeks I have felt more tired and somewhat fatigued. Some nights this past week I was in bed by 8:30 P.M. Also I have been doing my combination of hot showers and a cold pad on my stomach before bed. Before these past 2 weeks I had been working out quite a bit-with 2 hour workouts not being uncommon and probably felt the best I ever have felt in my life in terms of energy and fit. The other thing that has seemed to help my energy level is taking potassium chloride on a regular basis. Before I was taking it on and off and it really wasn't doing anything. When I switched to taking it on a regular I could definitely see a difference in my mood and energy levels.
My weight has declined steadily. Typically I am in the 163-165 pound range but recently dropped to 158 and currently hoovering around 160 pounds. Overall though I do like it as I look more trim and fit. When I lost weight I would add more and initially wasn't gaining weight but then eventually the weight came back all at once!
Concerned about the weight loss I went to my primary doctor and he said he couldn't really point to anything but said it could be a temporary virus or something that could pass. Usually I am pretty proactive if I am not feeling well. This weekend I plan to get some good sleep and just relax. Work has been fairly busy but I am not stressed as I have been at times before.
Hopefully, this cramping is a temporary thing. I have seen this many times before and honestly lucky and happy I have been in remission for so long (since June 2012). If there are any other developments that come from this I will be sure to post them on my blog.
Wednesday, December 26, 2018
For a while I had heard of Squatty Potty. Honestly I was a little skeptical about this device. There were thoughts in my head like 1) why hadn't a gastroenterologist invented this already? 2) How effective could it really be? 3) Is this just a fad? To be perfectly honest even though I had Crohn's I had not realized that constipation was such a common problem.
Well December 3, 2018 was interesting day for my bowels. At work in the early afternoon I had tried to pass a bowel movement but was unable to do so. It felt as if I had two large bricks in my backside and I pushed and pushed but nothing happen. I left work early and went to a Target near my apartment to see if they had Squatty Potty (someone who worked at the store looked at me without trying to laugh). Unfortunately, Target was out so I went and purchased some stool softeners. As I was walking to the car my backside felt like it had a tremendous amount of pressure inside. I went home and was able to pass the bowel movement (honestly it was one of the largest I had ever passed) and I felt like I had lost a few pounds in a matter of minutes. So I ended up not using the stool softeners and got them just in case. I had been having constipation issues for the previous couple of weeks so I went ahead and went onto Amazon and ordered one through Amazon Prime.
When my Squatty Potty arrived I still was skeptical thinking is this really going to work? Luckily the day it came I had some constipation and had tried to test try the Squatty Potty out first. It is pretty easy to use and really helps you squat to do your business. The first time I tried it honestly it did help make it easier. I did a test run too to try a bowel movement with and without the Squatty Potty. I did notice the Squatty Potty did help ease passing the bowel movement. The best way I can describe it is the Squatty Potty seems to keep everything in line (as opposed to just sitting on the toilet). Overall, I am quite happy with the Squatty Potty and have noticed an improvement in passing bowel movements and reduced strain.
Sometimes regular people and Crohn' patients have constipation. The constipation seems to have gone away as I have been working out much more (I am off on vacation for 2 weeks) and therefore drinking plenty of water to stay hydrated. I would recommend the Squatty Potty for anyone that is looking to help pass their bowel movements and honestly don't see any harm in using it (even for Crohn's patients). Although, I am not a doctor I would think the Squatty Potty would help since you aren't having to strain as much which over time could cause issues.
Full disclosure: I purchased Squatty Potty on my own and don't receive any financial support from the maker of Squatty Potty
Saturday, August 11, 2018
Recently Redhill announced results in July 2018 for a Phase III trial for their drug RHB-104. RHB-104 is an oral pill (no infusions or shots) that uses a combination of antibiotics to treat Crohn's disease. The thinking behind the drug is that Crohn's is a bacterial infection caused by mycobacterium avium subspecies paraturberculosis (known as MAP for short) which is an infection often found in animals. This infection is believed to contribute or cause Crohn's disease. The theory if you have a medication of anti-MAP it can get rid of the infection and put the Crohn's into remission.
I documented in this post of a woman named Julie Doyle who had surgeries and had tried Humira, Remicade, and every other therapy for Crohn's and then finally tried the anti-MAP therapy (similar RHB-104) and within 6 weeks Julie added 10 pounds and within one year she had a colonoscopy that showed the Crohn's was in remission. This presentation shows patients that have taken RHB-104 with the before and after photos of the colonoscopy. This article discusses a man in Australia who took 45 minutes to get out of bed from his Crohn's and unable to function until he took an anti-MAP therapy and has been off medications for over a decade and has an "unrestricted life". This presentation discusses a man named David who has been in remission for anti-MAP therapy since 1996. Although, these are only anecdotal stories it is important to know that this therapy has literally changed the lives of individuals and families.
The results of the most recent RHB 104 study showed that after 26 weeks the percentage of patients that had remission was 37% vs 23% for the placebo group. The percentage of people achieving remission from weeks 16 to week 52 taking the medication was 18% vs a 9% for the placebo. If someone who had been flaring for years had almost a 1/5 chance of finally being in remission I would ask my doctor how to get that medication. At the 1 year mark 27% of individuals were in remission vs 20% (this result was not statistically significant)
Studies on anti-MAP therapy have been occurring since 1997. Even before this most recent trial occurred over 400 patients had been in clinical trials. The most recent trial for RHB-104 had 331 patients involved which would put the total number of patients over 700. Also it important to note that there hasn't been serious side effects reported with anti-MAP treatment as opposed to the placebo.
Redhill will be meeting with the FDA to discuss a potential approval. I honestly hope the FDA approves this drug as many people suffer from Crohn's: are in misery, have no alternatives, and are open to try this drug. It is important to note that this drug has a pretty good safety profile. The drug has been used in clinical trials and on patients for over 20 years. How much longer do patients suffering have to wait? Another drug to treat Crohn's should always be welcomed as another tool in the tool belt for doctors and patients.
My view as someone who has suffered with Crohn's I have had times when I didn't know when a flare would go away and before I took Humira I can still remember the shooting pain in my stomach that felt like a blunt object stabbing away and having to run to the bathroom urgently. The data shows that RHB-104 and anti-MAP therapy can offer remission to some patients who have tried other medications that have failed. Also given these studies have occurred since 1997 provides years of patient data and to my knowledge there haven't been serious side effects over the years the drug should be approved for patients to see if it can help them. Life is short and we deserve to live the best life possible.