10 Year Anniversary of Crohn's: My Journey and What I Have Learned

Time really does seem to fly by. On December 7, 2011 I was diagnosed with Crohn's disease. I remember being in the office of my gastroentologist (GI) with my parents and him telling me my diagnosis. During Thanksgiving 2011 I was hospitalized and my weight had declined to 125 lbs. Normally during this period I was around 150-170 lbs. Before I had Crohn's I was diagnosed with IBS and had this pain in my side (the kind of pain when you are running laps in P.E.) and took some medication to keep the IBS at bay. At first when I was diagnosed I was unaware of what Crohn's disease was. I can still remember when my GI told me when he my very first colonoscopy he said my colon was rotten and on a scale of 1-10 in terms of severity my colon was an 11. In hindsight I am lucky I didn't need an operation at the time. What I remember most from that period of time was taking large amounts of Prednisone. At one point I was up to 80 mg of Prednisone per day which made me feel like I was bouncing off walls, irritable, have a moon face, and constantly hungry. There were times I remember eating 5 times a day! The other thought I had was some initial depression since now knowing you had a chronic disease and knowing I would always and forever have it. My GI and I agreed to stick with Prednisone until I graduated from grad school. I graduated in May 2012 and then moved back home to live my parents for a while. At that time I was really crashing and can remember waking up really sick going to the bathroom quite a bit. At this time my parents had moved into a new house and remember waking early going to the bathroom watching T.V. for a little bit before drifting off to sleep. In June 2012 I started Humira and that has been the best thing I have ever taken and has dramatically changed my life. I would say 95% of my days now I honestly don't know I have Crohn's. These days I rarely have a loose bowel movement and every now and then have a stomach cramp but generally in overall good shape. 

Back in 2013 I was diagnosed with c difficile after taking an antibiotic. I had tried Dificid which worked for a while and then stopped working and at the time it was difficult to find a provider that would perform fecal transplants. Back at that time very few providers were actually performing fecal transplants. These days doctors at large hospitals and institutions all over the country and around the world are providing for them. Back in May 2013 I was patient number 44 for a fecal transplant at the Mayo Clinic in Rochester, Minnesota. Since I was able to see the magic of having a fecal transplant change my life I have been interested in learning its application not only for Crohn's and inflammatory bowel disease but also Alzheimer's. I blogged back last October how an 82 year old man had c difficile and Alzheimer's and was given a fecal transplant. Six months post fecal transplant his mental state greatly improved going from mild dementia to a maximum Mental Mini Score Exam of 30. To add fuel to this fecal transplant fire in October of this year again I learned there was a case report of a 90 year old who greatly improved after a fecal transplant. I truly home fecal transplants are studied much more in depth to see if they can be applied to people with Alzheimer's and people with Crohn's disease. 

We truly live in a golden age for drug development for Crohn's. The FDA has approved many new drugs for Crohn's even since I was diagnosed. The biggest drugs approved have been STELARA, Envtivyo, and Tremfya which recently has shown great results (65% of clinical remission in Phase II trials for Crohn's were published this past week) Even more recently as I write this Rinvoq has shown positive results in Phase III trials for Crohn's as well. Almost 40% of patients who took Rinqoq were in clinical remission after taking it. The other big improvement I have noticed is the bowel preparation for Crohn's/colonoscopy. When I was first diagnosed I remember having to drink all this Miraxlax and Gataorade. I actually remember the night before the colonoscopy falling down and I somehow ended up with a little white mark on the left side of my nose even thought it has been 10 years! Recently when I went for my last colonoscopy in August 2021 I was able to take Sutab (which just got approved by the FDA in November 2020) and I reviewed it here and all in all thought it was easier to use than the Miralax and Gatorade. Although Crohn's is very unfortunate if you had to have it now would be the best time in history given the therapy treatment available. 

To me one of the amazing things is how many people actually read this blog. As I write this this blog has been read over 140,000 times! Not only do people in the United States read this blog but everyone around the world! My initial goal was just to have a repository for my own journey with Crohn's. These days my hope is someone will read it and be able to use the information to improve their Crohn's or inflammatory bowel disease situation. I am really amazed that I have published over 225 posts. When I started I probably thought ya it would be nice to start but had no idea I would be blogging for 10 years! One of my popular posts was back in October 2012 reporting some positive data on a drug called Stelera. At the time the drug had shown positive results but it wasn't approved by the FDA until September 16, 2016 (almost 4 years after I first blogged about it-hopefully the FDA read my post). 

The most important things I have learned since being diagnosed with Crohn's is most importantly to be grateful for every day and to have compassion for other people who may be going through something difficult. Given before I had Crohn's I honestly never had any medical issues. Growing up I remember having donuts on Saturday morning and on Sunday sometimes we would have Cinnabon's and having to have bowel movements a few hours after. Living with Crohn's has taught me yes there will be good and bad days but to really cherish the good days. The only thing that I have noticed (which honestly was probably true before I had Crohn's) is I tend to get a stomach ache if I eat something very rich (chocolate dessert/something greasy). My general view of my stomach is thinking of it has a brown paper bag and if the food you eat will leave a grease stain then it probably will cause some pain or cramping. The other thing that really has helped me is getting a good amount of sleep (this can be a game changer from my own experience), taking hot baths, and using cold packs on my stomach. The first time I took a hot bath I remember feeling as if it changed my world. The cold packs help manage the pain even though I know it doesn't technically "help". 

I am truly grateful for the medical care I have been provided and honestly never would have though (especially during my dark days early on) that I would have achieved remission for this long. To me I have been incredibly lucky that I haven't needed surgery to removal my bowel/overall have been in good health and when I compare myself to the average person and even people my age I don't feel as if I have had major differences in my health. Everyday I am able to work at a job I enjoy, work out, travel, and really don't have any restrictions. I truly am a lucky guy. 

Eating Right, Relaxation, and Crohn's Remission

 Recently I took the past Thursday and Friday off from work. This comes after passing the Enrolled Agent exam (3 exams) last month and I really haven't taken much vacation from work this year. Friday I felt the best I had in quite a while. The nice thing about not going to work is you don't have the stress of worrying about what you need to do/have to do when you are off. However, I do still have a tendency to check my e-mails even when I am off (you know to make sure things don't blow up). Related to this I have been listening to an audio book called "A World Without E-Mail" by Cal Newport which essentially attempts to get you to check your e-mail less frequently given it tends to cause burn out (which I would agree with). Especially these days everyone is always "on"-nights, weekends, holidays and stresses everyone out. I tried for a day or so to check e-mail only once or twice a day and it felt nice. Unfortunately, this only lasted a few days since I guess we are all creatures of habit. I have notice stress does contribute to flare ups for my Crohn's. The main triggers for me are sleep, stress, and what I eat. Out of all those factors I would say sleep is the most important. Poor sleep leads to the more stress and making poor food choices. Taking Thursday and Friday off allowed me to get plenty of rest, eat light but yummy food, work out, and really just enjoy the day. 

In addition to this Friday evening I got a massage (at Massage Heights) and was amazed at how I earlier in the day had some light cramping but after the massage went away completely! A couple of months ago I saw a chiropractor off and on which does seem to help but I haven't made an appointment in a while. Saturday and Sunday (today) were somewhat of a lull. I woke up late on both days (super late today) and notice that if I look at my phone before bed too much is when I have issues. If I read before bed I am usually almost always better off. To try to help me sleep I have white noise videos from YouTube of the ocean, winter storm, or something else to relax me. One thing I have looked at is the Oura Ring which currently is about $300 and they just came out with their 3rd edition (however it looks like they will charge a monthly fee after 6 free months). I am curious at possibly looking at this for myself. Given sleep is pretty important and affects your productivity, mood, and ultimately life it may be worth the small investment. 

The key component is the good sleep because that essentially sets everything else. So many times I have either had major cramping or gained weight because I didn't sleep well and then would just be grabbing whatever. These small steps have made a difference in staying in remission with Crohn's. 

Rhino Virus and Current Health

Recently the past couple of days I have felt quite stuffed up with a runny nose and lots of congestion. At first I thought it was allergies (and even when I took an allergy pill it helped) however today I woke up pretty tired and was concerned I may have some type of infection and didn't want to go into work and possibly infect other co-workers. Last night as I drove home from work I was my nose was just dripping with gross stuff. 

This morning I called my doctor's office to schedule an appointment (since it is a Friday) and it would stink to not be able to have any relief before the weekend. The doctor's office required me to get a COVID test first (I have received 3 Moderna vaccines and given I was only congested and stuffed up the odds of this were pretty remote). At any rate I took the swab test this afternoon and it was negative (shocker). I then saw my doctor who said I could have a rhino virus or some type of sinus infection. When my doctor looked inside my nose she said it was quite inflamed and swollen. In terms of what I would take to help me she wrote a prescription for doxycycline which I am going to take for 5 days. Also she recommended that I take a probiotic given my compromised immune system which I agreed with. She had said I could take Claritin D if needed (I went ahead and got that) and also to get Flonase which I actually haven't taken in many years. I took all my medications with some light food before. Speaking of food I noticed this morning I had an odd taste in my mouth when eating which was bizarre but may be related to the fact that I am sick. 

The nice thing about this weekend is it is Daylight Savings Time so that means hopefully I will be able to rest and get an extra hour of sleep (hopefully). I slept pretty good last night but was still tired this morning but I think gradually I will feel better. Currently as I write this I am on the couch and a little sleepy but sure I will gain my second wind later on tonight. I feel overall pretty good and don't have any symptoms of being stuffed up or a runny nose even though I took my medications roughly an hour ago.

A few years ago in November 2019 (around Thanksgiving time) I was battling a upper respiratory infection. It seems as if around this time every year I come down with either allergies, some type of virus, or cold. Also I received my flu shot last weekend too! I thought I was all set for the holiday season but apparently not. All and all thought I can't really complain about my current health as I am in remission and have a slight set back with this virus or whatever the heck it is. I will be hydrating this weekend, resting, and just relaxing. 

Sutab Review For Crohn's Patient and Colonoscopy Update

This past week (August 25th, 2021) I had a colonoscopy to monitor my Crohn's. My last colonoscopy was back in August 2018 and my gastroenterologist wants me to go in every 3 years for an update which I covered here. 

One thing that was different this time around was the type of bowel prep I took. The last time I had my colonscopy I had Suprep Bowel Prep Kit (which includes a very gross tasting bowel prep-12 ounces to be exact). My thinking when I had this bowel prep was "hopefully I don't have to do this for another 7-8 years). This time around I was prescribed Sutab. Given I saw Sutab was approved by the FDA for bowel prep I thought I would try this given I am not a fan of the Mirlax and Gatorade. Honestly, I can say I still have that yucky taste in my mouth even though I last had it 3 years ago! 

The nice thing about Sutab is it is just pills and water (that's it!). Having to do bowel preps before I thought this would be an improvement over the previous method. My gastroenterologist allowed me to take Zofran (his prescription was for 3 pills) and I decided to take one pill before each prep (I took the first one an hour before my first Sutab pills). The way Subtab works is you take it twice (the evening before your procedure and then early in the morning of the day of the procedure). 

I started taking the Sutab pills a little after 6 P.M. and then around 9 P.M. there felt like there was a storm in my stomach. It wasn't until around 10 P.M. that I had my first bowel movement. After that I would say I was in and out the bathroom a few hours then able to sleep until 2 A.M. when I took the next dosage of Sutab. With each Sutab you take 12 pills (these pills are easy to digest too) and then drink 32 ounces of water. I found that I was actually drinking more water even after taking the pills because I was thirsty. Even though I was in the bathroom a dozen times during the night I felt as if it was easier than the previous bowel prep. I also did not feel nauseated as some people online have reported (I credit the Zofran) with helping that). 

Around 2 A.M. I woke up (and watched Frasier on T.V. to pass the time) and popped in one Zofran pill 10 minutes before I started my second batch of Subtab pills. I dumped the pills out on the table (the closest I will ever be to becoming a drug addict!) and took them one by one. For the second round I probably consumed all the pills over 20-30 minutes (as compared to the hour and half for the first found). 

I would say this time around my rear didn't feel as raw as it did the last time I had a colonoscopy. The morning of the coloscopy I took a hot shower which did provide some relief to the pain I was feeling in my rear. One thing that really did help me as it did 3 years ago was having adult diapers. I ordered Depends years ago and rarely have used them since I don't have any flare ups from Crohn's. I did notice the night before the colonoscopy I had involuntary bowel movements. To me the adult diaper is somewhat like wearing a bulletproof vest for your rear in a sense. Since I am fairly conservative I used two adult diapers for protection. One thing I did different during the day is I had Pedialyte which I think didn't make me feel as dehydrated. 

I weighed myself after I took all the bowel prep and weighed 170 lbs and this morning weighed 166 lbs (after I was all cleaned out). After the procedure me and my mother stopped by a local diner placed and I had a CLT (cheese lettuce tomato sandwich, French fries, and hash browns with some pecan fudge pie and ice cream). The last time I had ate was around Monday night at 10 P.M. 

Compared to the last colonoscopy I was more sleepy and dazed post the colonoscopy even though last time I stayed up from 4 A.M.-8 A.M. to watch TV. My colonoscopy was schedule for 10 A.M. this time around but you typically check in, go back and get comfy on a bed and a nurse will ask you questions, and then they finally wheel you back. My glasses were on but I was taken back to the doctor around 10:20 A.M. and then put to sleep and I woke up groggy and had some food went home and took a nap.

In the days after the colonoscopy I probably felt more tired then usual (however I think my body was just trying to catch up on the sleep). In the report prepared I noticed on the report that I had a anal stricture which concerns me a little bit if there is anything I need to do to fix. However, it looks like the rest of the colon was okay (inflamed a little bit from the Crohn's as expected). My gastroenterologist told me this was nothing to worry about since it was just caused from the previous inflammation from the Crohn's and nothing new. Also honestly I don't feel any pain near my rear and just have felt a little constipated. 

All in all I am glad I took the Sutab bowel prep and would do it again. The only thing I would change would be maybe starting the prep at 3 P.M. and the second round at 10 P.M. to allow for better sleep the night before. Given the pills take 3-4 hours to get through your GI track I would haven't to been worried staying up thinking when I will have a bowel movement. I am just happy that I am still in remission and don't have issues and had a clean bill of health. 

Current Status and Upcoming Colonoscopy

Well it actually has been almost one year since my last post! I really can't believe I haven't blogged in that period of time. The main reason for not blogging is I haven't felt a need to (which is a good thing given I have been in good overall health). My game plan is within the next year to blog more often and focus more on research (new treatments available for Crohn's disease). 

Overall my health has been very good in the past year. I still rarely have any type of loose bowel movements and rarely in pain. Every now and then I might have some cramping that comes and goes for a couple of days but hey if that is all I have I would say I am winning the battle with Crohn's. As usual the biggest factors seem to be stress, sleep, and what I eat. There have been times were I feel some cramping and then I sleep for 9 hours and feel like a million bucks the day after. 

Recently I have been stressed because I took the second part of the Enrolled Agent exam (for non tax people it covers business income taxes). I had been studying months for the exam but within the past couple of weeks really tried to work hard. Every morning I would wake up and study around 7 A.M. until around 8 A.M. and then use that time to get ready for work. During lunch I would close my office door and get in about an hour, and then after work study for a few more hours. The pressure of both studying and working I could feel the burden. The last few weeks I have felt more of a cramp in my lower intestine. What is interesting is after the exam my cramping went away completely! 

My colonoscopy is scheduled for this coming Wednesday (August 25, 2021). On Monday I have to go in to get a COVID test (I got my 3rd booster vaccine at a local Walgreens by me last week). The only main side effect was a slight sore arm. I was able to get the third vaccine since I take an anti-TNF drug (Humira) and I had to sign a self attestation form that my immune system was compromised. My view was given the minimal side effects of the vaccine and given I have already had two vaccines it is somewhat like  My last colonoscopy which I blogged about here was in July 2018. The big difference from this time is I will be take Sutab prep pills (they were approved in late 2020 by the FDA)  instead of taking the usual Gatorade and Miralax combination. Actually the last time I had my colonoscopy was better than the previous colonoscopy but I can still have the after taste in my mouth. I read some reviews online of Sutab and some people complained that they had to vomit. Well one way around this is I had my GI prescribe Zofran to get around this. I will probably write a follow up on my experience after the procedure. I am curious to see how the procedure goes and move importantly to make sure I am still okay in terms. 

Fecal Transplant Greatly Improving Alzheimer's and Other Diseases and Illnesses?

As many of you who read this blog know I back in 2013 suffered from c difficile and ended up going through many rounds of different drugs without anything working. Luckily back then I was doing research and had discovered (on my own) that fecal transplants starting to gain acceptance and being performed around the country. At the time the success rate of fecal transplants for c difificle was 90%. To be honest since I had the fecal transplant I really haven't had any issues in terms of major flare ups (the only time I was in the hospital for Crohn's was when I was initially diagnosed.

Other uses for fecal transplant may include autism, alcoholism, obesity, multiple sclerosis, Parkinson's, rheumatoid arthritis, acne, insomnia, major depression, diabetes, cancer, peanut allergies, chronic fatigue syndrome and even anorexia, 

A recent case study showed that a 82 year old man who had c difficile and Alzheimer's was treated with a fecal transplant (he received from his wife). Just 2 months after the fecal transplant there were improvements that were noticed for Alzheimer's. First the patient had a sharpened state of mental acuity and mood improved. Between 4-6 months there were further improvements to memory and mood. Initially the Mental Mini Score Exam (a metric used to determine dementia) was only 20 (which indicates mild dementia). Only two months after the fecal transplant the number increased to 26. At 6 months the score increased to 29 (the maximum score is 30). The author who published the case study is now running a double blind placebo controlled clinical trial to see if having a fecal transplant (orally) would have any effect on Alzheimer's patients. Although, this is only one reported case it would be interesting if fecal transplants could help individuals with Alzheimer's and dementia. Also given that there really aren't any drugs on the market that reverse the underlying condition of Alzheimer's (my understanding from when my grandmother had dementia was the drugs keep things stable but over time the disease takes over). Roughly over 44 million people around the world have Alzheimer's. If a fecal transplant or a fecal transplant was required once a year and it could truly improve the symptoms of the disease it would be a game changer for not only patients but their caregivers and most likely save the healthcare system worldwide tens of billions of dollars a year.

Within the next few years there will be more researchers and doctors studying fecal transplants to see how effective they are at treating various illness and diseases. The hard part too is that often times researchers stumble into these findings like with the Alzheimer's case study (since the patient had both c difficle and Alzheimer's). My view is that even if fecal transplants could help 10%-20% of people with all these illnesses and diseases (inflammatory bowel disease, cancer, Alzheimer's, etc.) fecal transplant would be something of a wonder drug that would greatly improve the quality of life of tens of millions of people around the world, improve their well being, happiness, and also make them more productive, and they are their families wouldn't be faced with the same psychological and financial burdens. The psychological aspect for Alzheimer's can be burdensome to caretakers (who are usually family members) and often times family members will take turns with other siblings to look after loved ones. 

Some questions will have to be answered in terms of what method is most effective to deliver the fecal transplant: by colonoscopy, enema, pills, naso tube, etc. the frequency of the treatment and the dosage. These questions would take time and clinical trials to figure out. Also and most important is the safety of the procedure. Generally fecal transplants are fairly safe however with COVID going on there will have to be safety protocols in place to ensure COVID isn't transmitted to patients. The other thing too is that fecal transplants are extremely safe (yes one person did die (the patient also had a rare blood condition too) but that was because the transplant was contaminated-it had been stored in a freezer for several months and developed e-coli). Remember Dr. Thomas Borody and his clinic in Australia have performed over 30,000 fecal transplants for over 25 years and to my knowledge haven't had many adverse effects. 

Crohn's and Coronavirus: What I Am Doing

With the coronavirus recently coming to the United States and infecting many different people the question is what are Crohn's patients to do. I contact my regular doctor and GI and both had similar advice in terms of avoiding large places/crowds, washing hands, and the usual common sense advice. Although I am not a medical professional I thought I would share what my game plane is to perhaps help other individuals.

The first thing I did last early last week was to stock up on water, toilet paper, and antibacterial soap. My views is that I could possibly be self quarantine for some period of time so I want to make sure I have the essentials. I have been washing my hands multiple times a day and avoid touching any public surface, I use the end of my key to press elevator buttons and use the end of the key to hit the automatic door opener just to reduce the risk. Also I have been avoiding going out as much as possible to also reduce my risk. However, at some point I will have to go out again to get groceries/get gas/etc.

Work wise I want to try to work from home later this week. I have a laptop that I can do work things but currently only have access to e-mail. Our company has a VPN (virtual private network) that I have used before but currently my VPN hasn't been working so I need to have that fixed before I can work from home. Honestly, I would be okay working from home considering I could do the same type of work from home. In some ways it would be a little less stressful (many times people will come in and ask for something).

My view is that my behavior of self isolating and self quarantining this week should reduce my risk of catching coronavirus. Also I have been on the lookout for anyone who might be coughing. I went out to dinner last night with my parents and noticed a woman sitting roughly 20 feet away from me and she had a dry cough but she only coughed a few times in a 20 minute period (so it may have been something else).

I currently take Humira which does lower my immune system however as I write this there is only 1 documented case of inflammatory bowel disease in the United States and there really isn't good data regarding what the outcomes are. Once the data is actually out there I would be curious to see if Crohn's patients would get sicker than just regular individuals. Also I would say other than Crohn's I am relatively healthy 33 year old male, who doesn't smoke, who doesn't have any cardiovascular issues, no diabetes, no cancer, no heart issues, and real other health issues.

My advice to other Crohn's patients is make sure you have enough supplies to last you a while, avoid going out as much as possible, wash your hands on a regular basis, if you do go out stay at least 6 feet away from other people, and just remember that this will eventually pass (even though it doesn't feel like it now) I know this too shall pass.