One Long Night, Weight Loss, and Flare

Last night was probably one of the roughest nights with Crohn's I had had in a long while. I was in and out of the bathroom almost a dozen different times. I actually went through a whole roll of toilet paper in one night. My bowel movements have all been close and I consistently have stomach cramping around my belly button. In the past couple of days if I recall when I last weighed myself on Wednesday I was 172 lbs. and now I am closer to 168 lbs. My appetite is also fairly low as I continue to have cramping in my stomach so I don't have the sensation of feeling hungry at all. Compared to flares I've had before they only last a couple of days and then they resolve themselves. This seems to be is there some type of infection or a major Crohn's flare. Last night my sleep also wasn't that great even though I went to bed around 10:00 PM I woke up at 2:00 AM, 6:00 AM, and then finally at 10:00 AM. I had more stomach pain when I woke up at 6 A.M. vs. 10 A.M. (the power of sleep!). To be proactive I had ordered some adult large Depends because I was worried about having some possible fecal incontinence overnight period look unfortunately they did not arrive yesterday as I had anticipated however they showed up this morning. I was lucky because last night I did not suffer from any type of fecal incontinence however I wore all layers of underwear and some sweat shorts. I don't have a fever poor am I stuffed up. I seriously wonder if this was all started when I had my allergy issues and then somehow that spiked my immune system to create some type of Crohn's flare. The only thing I remember was when I had Sudafed I had some stomach cramping however when I switched out the medication to Claritin and it seemed to do better in terms of my GI system. I haven't taken any antibiotics or other medications in the past couple of days. 

My overall energy levels are pretty low and I constantly feel fatigue and tired. Even getting up I feel a little lightheaded. My game plan for today since it's Saturday is to just rest, relax, and stay hydrated to the best of my ability. Also I will try to eat very light food OK then high stomach is quite upset. Although at the rate I'm going if I lose 1 LB per day in another week that will be underweight compared to where I should be.

I called my internist before even though it was the weekend and she mentioned to take electrolytes and stay hydrated. She will send my GI as message as well. This morning I have sent my GI a message as well to explain my symptoms as well. Hopefully between both of our messages I can see my GI earlier than the following Monday. I feel like I have seen this movie before and don't feel like I am at death's door just not feeling well. 

Allergies and Potential Crohn's Flare

The past week has been interesting health wise. First I had allergies for the past week were I was stuffed up and congested however never had a sore throat or fever at all. Previously three weeks before that I had some allergies as well but it lasted only for a couple of days. Within the past couple of days I am no longer stuffed up however have been really tired with fatigue. Yesterday was probably the worst day in terms of how tired I was (even though I slept 10 hours the night before-however I did wake up multiple times during the night. My last workout was Wednesday morning and I felt as if I was really dragging during the workout. 

Last night I probably slept a little over 9 hours and when I woke up was still tired even though I had a good night's rest. My stomach was also cramping and I had to go to the bathroom maybe half a dozen times and all the bowel movements was liquid, however there wasn't much cramping. Also the past couple of days I haven't been super hungry either. Last night I did have some baked ziti and fried cheese which could have potentially contributed to the mini flare this morning. My stomach seemed a little angry and ever I had my bowel movements seemed relieved. I decided to skip my usual flat white this morning since I was worried the caffeine may accelerate the diarrhea. 

As I write this my cramping seems to have gone away however I am still fatigued and tired (however my energy levels have improved from yesterday). When I get home from work I look forward to resting. My game plan is to take a hot bath, get some good sleep tonight (since tomorrow is Saturday and I don't have to be anywhere), have a light dinner, and stay hydrated (usually with water and Pedialyte). 

On Monday I have an appointment with my doctor who will do some blood work. As a back up plan I have an appointment with my GI the following Monday just in case things don't improve (given his next appointments aren't until June). Personally I feel as if this is a minor setback and backed on history I generally bounce back.  

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.

FDA Approves For Rinvoq for Crohn's Disease (My Take As A Patient)

Recently on May 18th, 2023 approved Rinvoq was finally approved for Crohn's disease. The study was published in the  New England Journal of Medicine and can be found here. In terms of clinical remission in one trial 39% of patients received clinical remission when taking the 45 milligram dosage. In the same trial 35% of patients achieved endoscopic response compared to a placebo response of only 4%. In a another trial 49% of patients received a clinical response and 46% of patients achieved in endoscopic response. For both studies this was the end point measured at week 12. Currently there are 8 drugs approved for Crohn's disease (this includes RINVOQ). 

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.

10 Year Anniversary of Humira for Crohn's and Still in Remission!

Time really does fly by! This month marks 10 years since I first started taking Humira (my first shot was June 6, 2012). I posted about the experience here, a 3 month post here, a 6 months post here, a 1 year anniversary post here, a 2 year anniversary here, a 5 year anniversary here, a review of Humira literature here . 

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.  

FDA Finally Approves Skyrizi for Crohn's Disease

Yesterday the FDA approved Skyrizi for Crohn's disease. As someone who actually lives with Crohn's (but currently in remission) I am always grateful that there are continually more FDA approvals coming for Crohn's disease given how many people/families have to deal with it. 

The FDA has three phases of drug development. The first phase generally looks at whether a drug is safe or not. The second phase looks at safety and if the drug is effective. The last phase looks at how effective the drug is. The two major phase three trials done were the ADVANCE and MOTIVATE studies. Between the two studies over 1400 patients were looked at. The type of patients in the study were patients that were not in great shape with their Crohn's. For example one measure they look at in these studies is the Crohn's Daily Activity Index (CDAI). This is one metric for how well a Crohn's patient is doing not only with their GI issues but also their well-being. For example my score is under 100. The scores can range from 0-600. Patients in the studies for Skyrizi had a CDAI between 220-450. So for example these patients would have had more than 4 soft bowel movements per day. In the ADVANCE study the researchers looked at those who actually failed a previous biologic before taking Skyrizi. This is important since many people with Crohn's will start on one biologic and then have to continually try new biologics until they find that works. 

In results from the ADVANCE trial show that 45% of patients taking the 600 mg treatment were in remission (compared to just 24.6% in the placebo group) after 4 months. What is interesting though is that in the MOTIVATE trial (were patients had not failed a biologic the remission rate was lower at only 42%). 

This result is quite remarkable is quite comparable to other biologics out on the market. According to inflammatory bowel expert from Dr. David Rubin at The University of Chicago patients that start the drug "feel better within a few weeks" as the "drug works fast". 

What is interesting though is that for Crohn's 600 mg is required (and has to be given through an IV infusion for the first dose followed by 360 mg every 2 months afterwards. It is interesting to note that Skyrizki was also approved for psoriasis back in 2019. Usually drugs that are approved for psoriasis have some chance of getting approved for Crohn's given that both diseases are autoimmune diseases. 

Skyrizi falls under a class of drug of IL-23 inhibitors. The inhibitor is just trying to tamp down the immune from overreacting. Currently there are three IL-23 inhibitors currently that have potential for Crohn's. The first being Skyrizi (which was just approved). Another IL-23 inhibitor is Tremfya which had good results in Phase 2 trials. The last IL-23 inhibitor is mirikizumab (which is made by Eli Lilly-as far I can see I don't see a street name for the drug yet). However mirikizumab has shown good results recently and almost half of patients in a clinical trial were in remission for ulcerative colitis (after taking the drug for one year). One recent paper suggests that IL-23 inhibitors may be superior to anti-TNF treatments like 

Personally I am pretty amazed at how many drugs have come on to the market for Crohn's since I was originally diagnosed back in 2011. Although having Crohn's can be awful and not fun it really is a golden time in terms of drug development. If you think about a drug potentially putting 40%-50% of patients into remission ends up being many hundreds of thousands of people feeling better. Also patients in remission allows gastroenterologist more time to work with other patients. 

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!