Crohn's Zone
Crohn's blog providing up to the minute on new developments, treatments, and research related to Crohn's disease.
Friday, April 19, 2024
Allergies and Potential Crohn's Flare
Monday, February 12, 2024
Another Round of Subtab, Zofran, Colonoscopy, and Day of Relaxation
Recently on February 9, 2024 I had my most recent colonoscopy. Overall the report was good and I had a 10 millimeter polyp in my descending colon however all other areas were normal. This makes sense given I rarely have had issues with my Crohn's since my last colonoscopy which I discussed here.
Just like the last time I had my colonoscopy I decided to use Sutab bowel prep. Overall, I have been happy with the Sutab bowel prep given the other bowel preps leave an awful taste in your mouth that you literally never forget!
I started taking the Sutab pills around 4:30 P.M. (even though I was instructed to take them at 6 P.M). Before I took the Subtab pills I took one Zofran pill for any anti nausea possibilities. My view is "hey as long as it gets through the system right?". There are two rounds for Sutab (one the day before) and the other round is the day of the procedure. Each round has 12 pills that you take with 4 16 ounces of water.
Around 8 P.M. is when I started to feel the salt water storm in my stomach and was in the bathroom off and on for about a dozen times between 8:30-10:30 P.M. Since I had the second round early in the morning I decided to wake up at 12:45 A.M. (again recommended time was 2 A.M.) however since my appointment was at 7:30 A.M. I was well within the 8 hour window Sutab recommends. Before I took my second round of Sutab pills I took two Zofran pills which really helped me out and felt good after that. I was up for probably an hour and at that point consuming more water was a little more of a challenge but still fairly easy compared to the alternative. Overnight I probably went through two rolls of toilet paper and for protection had 3 layers of Depends underwear to protect any leakage (it did a fairly good job in protecting me) I actually slept fairly well given all this and woke up around 5 A.M. to get ready, shower, and hop into the car. The interesting thing is at the beginning of the night my rear hurt a little but throughout the night it didn't hurt as much as it had in the past. Taking that hot shower in the morning before the colonoscopy always feels amazing.
My procedure started around 9 A.M. and I was out by 10 A.M. After the colonoscopy I went to a local diner for a CLT (cheese, lettuce, and tomato) sandwich with some fries that had seasoning on them! I opted not to have dessert just given the amount of calories. After lunch I got a flat white coffee and felt pretty decent. Compared to my last procedure I felt as if I wasn't as tired and not sure if that is because I started the process earlier, in better physical shape (since I have been working with a personal trainer), or more accustomed to waking up earlier (since I have some personal training sessions at 7 A.M. during the week (so usually am up 6 A.M.). Also my last colonoscopy was at 10 A.M. so the hunger pains truly set in and messes with the body. I remember after the last colonoscopy I slept for a couple of hours and was still tired and was sleepy for the next couple of days.
This past weekend was pretty relaxing and I didn't do too much. On the night after I had the colonoscopy 7 P.M. felt like midnight! Overall for the weekend I felt I slept really well. On Saturday (one day after my colonoscopy) I was able to work out without any issues. I did notice some lose bowel movements which for me is pretty rare. My weight got down to 168 pounds (mostly due to the bowel prep and just losing water weight). My appetite was in full force and I had a burger on Saturday afternoon and Tex-Mex on Sunday so I am sure I have gained all the water weight back.
Sunday, June 18, 2023
FDA Approves For Rinvoq for Crohn's Disease (My Take As A Patient)
One of the big differences with Rinvoq compared to other drugs is it is a one daily pill (as opposed to an injection or infusion like Humira or Remicade). As a patient I have mixed feelings about a daily pill (given you could easily miss one day as opposed to taking a Humira shot every two weeks). The one positive though is with Humira has to be refrigerator which can become dangerous if there is a power failure or outage and don't have a backup generator to keep the medicine cold. Rinvoq is not approved to be taken with another biologic therapy or other immunosuppressant.
The FDA just last year approved for Skyrizki which I covered on my blog last June. This article here does a great job of showing the drug development pipeline for Crohn's disease. What is interesting is almost every drug that was approved before 2019 was approved for both ulcerative colitis and Crohn's disease. This would make sense given they are pretty similar diseases. Remicade was approved for Crohn's disease in 2003 and then approved for ulcerative colitis in 2006. The biggest delay was Humira which was approved for Crohn's in 2007 but not until 2012 for ulcerative colitis. A five year timeline is a long time for people who are truly suffering to wait. Personally I am more of a fan if the drug was approved for either Crohn's or ulcerative colitis for it to be tried by patients who suffer from both (given some top notch GI's speculated I had signs of ulcerative colitis) and would allow for much for flexibility. If you look at the history of Rinvoq being approved it was first approved for rheumatoid arthritis in August 2019, psoriatic arthritis in December 2021, and ulcerative colitis in March 2022. I think what this would say to the average patient is if an autoimmune drug is approved for one diseases there is a decent chance it may be approved for another disease.
One current issue is access to the drug. The list price for Rinvoq is $6,125/month, however AbbVie the drug maker has co-pay assistance cards that can bring the cost down to $5/month (usually there are financial qualifications for this). As a GI online tried to prescribe the drug on May 23, 2023 (only 5 days after the FDA approved the drug and Blue Cross Blue Shield denied the coverage. There are people who have stories online of their insurance company not approving it or the cost being extremely high. The issue is further worsened by the fact that when individuals switch health insurance plans by either selecting a different health insurance plan, switching employers, or switching health insurance plans through their spouse they are denied access which is a real shame for people who just want to feel better!
I am glad to see the FDA approved Rinvoq as this will give Crohn's patients another drug to try if they have failed a biologic drug. I am also enthusiastic to see the future development of drugs for inflammatory bowel disease and what the next three to four years look like. Although, there are eight drugs currently approved for Crohn's disease by 2026 it appears there may even be more options than are currently available. Also hopefully this will reduce the need for patients to make frequent visits to their doctor (and potentially keep patients out of the hospital) if they are able to maintain remission for long periods of time. The main question though is will patients have access to this drug and more importantly be able to afford it. I am grateful that I live in a time period where there are so many options available if I ever have a severe flare up and need to try a different drug. It really probably is the best time if ever to have Crohn's or inflammatory bowel disease.
Sunday, June 19, 2022
10 Year Anniversary of Humira for Crohn's and Still in Remission!
In the summer of 2012 (around May 2012) I can remember crashing pretty bad with a major flare up with Crohn's. I can still remember waking up in the middle of night (at 2 A.M.) with blunt sharp pain in my stomach, throwing up, and couldn't get out of bed. These days I live a very normal life without any gut pain and rarely have a loose bowel movement.
At first I can remember being anxious and nervous about having to inject something into my body for the rest of my life/the possible pain of injecting medication. If I recall correctly the drug started working within days of me taking it. I recall going on YouTube and looking up videos of other people who had taken Humira and remember this one guy saying that he really wasn't in pain and could finally eat potato chips again without having to worry about pain (I didn't think this would happen to me). The only time my dosage changed for Humira was after I had a flare up of Crohn's (post c difficile and fecal transplant). Other than that though I have stayed at 40 mg injection every other week.
One improvement I have seen within the past few year is the Humira citrus-free version. This new version seems to have resulted in less pain when injecting. Typically I leave my Humira out for 15-20 minutes. In this post I mentioned why I don't rotate my Humira shot (per instructions).
In conclusion Humira has been a miracle drug for me and has worked quite well! Hindsight is always 20/20 and I was initially diagnosed with Crohn's in December 2011 (but I probably had Crohn's beginning in October 2020) I wished I had started Humira earlier! At the time I was in graduate school and my family and doctor agreed to stay on Prednisone and Asacol to get me through. Humira has forever changed my life for the better.
Saturday, June 18, 2022
FDA Finally Approves Skyrizi for Crohn's Disease
Saturday, May 14, 2022
Minor Flare Up, Right Shoulder, and Upcoming Trip
Overall my health has been pretty good the past couple of months. This past week I have felt a little on the tired side even though I have been getting the right amount of sleep. It was strange since I went to the doctor this past Thursday (more on this later) and went for an x-ray and after the x-ray I noticed a minor flare up on Thursday and Friday. During the flare up I actually gained weight to balloon up to 171 pounds (currently back down to 168 pounds). Lately I have had some cramping and just taking it easy with light sandwiches and soups to not have anything too greasy or salty.
I went to my internist on Thursday after I had some minor right shoulder pain for about a month or so. Gradually over time it has seemed to improve. Honestly I don't know how it happened but I think since I use a weighted blanket at night (which can be quite heavy) I may have used my right hand/arm to pull the weight up and somehow strained it. Currently, I just have pain when I move my arm side to side (like putting on a seat-belt or moving my right arm side to side). The pain is very very minor and most of the time I don't notice it as it doesn't radiate. My doctor had prescribed physical therapy, some cream, and to take 500 mg of Tylenol for a couple of days. I haven't taken any Tylenol since I am concerned that taking it may flare up my Crohn's. My physical therapy appointment has already been scheduled for after I get back on vacation.
Next week should be exciting as I plan on taking a vacation (I haven't been on one in a while!) to London to see my twin sister, my new nephew, and brother in law. The trip will be a little over a week but should be relaxing and we will get to see my nephew get baptized. I took my Humira last week but since I will be gone a while I plan to take it tomorrow night.
Although, I have had some minor set backs recently, all in all I feel pretty well. Last night I went to bed around 10 P.M. and was pretty tired and got some amazing sleep. Amazingly my flare pain seems to be nil today!
Saturday, February 12, 2022
Cramping Appears To Have Resolved!
In terms of what I have been doing to help out the pain, I have been making sure I get ample sleep. So last night my Oura ring tracked 8 hours of sleep. You have to remember it does take me a little while to get to sleep so when I get 8 hours I feel pretty good. The previous night before that I only got 7 hours of sleep which made me feel sluggish and tired and also seems to have an impact on my gut health. The other change I have made is I have been trying to eat light (nothing greasy or too heavy). Lastly, I have been making sure I have been taking hot baths to help relieve the pain.
I feel great compared to where I was a couple of weeks ago when I both have constipation and cramping and the constipation seems to have gone away and the cramping has been greatly minimized. Even though things are going well I will try to keep at it with ample sleep, eating light, taking hot baths, and increasing my fiber a little bit.