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.
Saturday, July 28, 2018
Well I turn 32 years old in a few weeks and there is nothing like a colonoscopy as an early birthday present! When I visited my GI last he had recommended a colonoscopy to monitor for colon cancer. The last colonoscopy I received was in 2011. I did have a fecal transplant in 2013 where I had it performed via a colonoscopy at the Mayo Clinic.
My colonoscopy was schedule for Friday morning (July 27th) at 10:30 A.M. The last night I could anything good was Wednesday so I treated myself to a cheeseburger, fries, and brownie sundae. Obviously, I was in a food coma after this and had to pace myself for Friday. For logistical reasons I stayed with my parents since one of them would have to take me home after the procedure. On Thursday I really didn't drink or each much. My GI prescribed the Suprep Bowel Prep Kit and I had two little bottles of 6 oz of bowel prep and then had to mix that with water (so in total with the water you have 2 16 ounce drinks-32 total ounces). As I was drinking the bowel prep I thought to myself "hopefully I don't have to do this for another 7-8 years (and maybe then the process will be improved. The only thing I really had was broth for dinner which I alternated between drinking water and bowel prep. I started the bowel prep a little after 6 P.M. on Thursday night and finished it by 9:30 P.M. At the beginning I was taking small sips and saw myself making progress but then towards the end I just started chugging it. After I had ingested all the bowel prep I was running to the bathroom frequently (I honestly went roughly a whole roll of toilet in the night and morning!). Also I was having involuntary bowel movements (mind you I recently haven't had any bowel movements. When this happened I got out some adult diapers I had when I initially was diagnosed with Crohn's years ago and they worked quite well. I had on the adult diapers, underwear, and multiple pairs of night shorts that kept me dry. Being in the bathroom I got bored so I turned on the T.V. and watched for a little bit then went back to bed and then probably around 4 A.M. woke up for no reason and watch T.V. and then just stayed up since I knew I had to leave by 8 A.M. to make it to the doctor's office. I took a hot shower which really helped as my backside felt like it had been through some pain. Your backside will feel quite raw going through this process. At the beginning the liquid following through you will be brownish and then transform to more of a clear liquid. By the end I felt water was going in my mouth and coming out the other side.
Once I got to the doctor's office it was pretty quick-sign in, fill out paperwork, undress and put on a gown and they give you hot towels which is nice and comfortable. My GI was running a little late but by 10:40 A.M. I was in the procedure room with the anesthesiologist, the GI, a tech, and a nurse. I was given Propofol (which burns for a few seconds) and then you are literally unconscious seconds later. When I woke up from the colonoscopy I was pretty sleepy but was able to leave within 15 minutes. I was told during the day of the procedure not to drive anywhere, work out, and to eat as if I had just had a hangover. My father had come with me for the procedure and was my ride. After the colonoscopy we headed to a nearby diner and I was starving so I ordered a cheese omelette, hash browns, and a slice of fudge pecan pie and it was amazing! I was feeling tired when I got home so I slept for a few hours and then woke up in the afternoon.
I found out later that the GI had told my father everything looked good on my colonoscopy. My GI found see some pseudopolyps in my sigmoid colon, in the descending colon, at the splenic flexure, in the transverse colon, at the heptic flexure, and in the ascending colon. My understanding is this was all from the initial damage done when I initially was diagnosed with Crohn's.
To be honest the colonoscopy this time around wasn't too bad. The whole experience was interesting and I am glad I knocked it out. Also this would say that the Humira I am taking has done an amazing job as I started it back in June 2012. Hopefully Humira can keep this up for the next colonoscopy!
Tuesday, July 3, 2018
So Fourth of July is tomorrow (I somewhat wish this holiday was on a Friday or Monday instead of a random Wednesday). For some reason I seem to have cramping almost every year around 4th of July and near Halloween time (not sure why this is). At any rate I have been having some cramping. Last weekend was somewhat up and down. Last Friday I felt pretty tired, Saturday I felt very good (almost no cramping) as I got plenty of sleep and took my Foltx and potassium chloride, and Sunday overall I had some minor cramping. This past week I felt a little tired and cramping.
My diet has been that great either. I probably have been eating things I shouldn't have. My weight has fluctuated a little bit. Within the past couple of weeks my range has been 165-169. Currently, I am hitting near that 169 mark. However, I plan to work out and watch what I eat (last night I had a grilled chicken sandwich with fries and a fudge pecan pie with ice cream-yes it was amazing too). Also over the weekend I had pizza, a burger, a brownie sundae and little workout. Usually I don't have any issue bringing down the weight . Honestly, if I weighed between 160-165 I would be happy (I always like to leave a little room for a dessert now and then-also I like to fit comfortably in my clothes as well).
I recently saw my GI and he said I looked like I was in great shape, however it had been a while since he had done a colonoscopy. Honestly, the last colonoscopy I had was at the end of 2011 (so a little less than 7 years ago). I am hoping the cramping will go away so I can see what my colon should look like when it is healthy and good! The bowel prep is always the worst thing but if I only have to do every 7 years that is a positive thing.
Overall, I don't really have too many complaints. Yes, I have some cramping, gained weight, and a little tired, however these issues can be resolved with hot baths/cold packs, watching what I eat, and some great sleep. Luckily due to the holiday I will sleep in tomorrow and this weekend as well. Hope everyone in the states has a good and safe 4th of July! Be kind to your bowels this holiday.
Friday, May 18, 2018
So this week has been interesting from a medical perspective. Last week I was feeling quite dizzy and my head felt as if it was moving up and down. Honestly I wasn't able to concentrate that well and had issues just remembering things. My internist recommended I see an ENT. Luckily I called the ENT office this past Monday and was able to get an appointment for Tuesday afternoon. My appointment was for 2:30 P.M. and I didn't get out of his office until 5:30 P.M. When I was describing my symptoms to the doctor: I told him I felt dizzy and it seemed to get worse if I moved my head side to side and up and down. He examined my ear and removed excess wax in my left ear. After I had the waxed removed I had a series of hearing tests performed (this was over an hour) and I had to repeat words, say if I heard certain beeps, and determine which side I was hearing the noise from. I probably spent more time on this hearing test than all of my other hearing tests combined. The ENT looked at the results and noticed that my hearing on my left ear was lower than normal and I explained to him that historically that has been the case. The doctor believed I could possibly have nerve damage although unlikely and wanted to order an MRI. He also diagnosed me with BPPV which is a form of vertigo (I had never had this before in my life. I went home and looked at some vertigo exercises on YouTube and think they seem to work. For this I would go to physical therapy. I went to physical therapy on Thursday and that was pretty good. The physical therapist checked me for BPPV and said I didn't show any signs of it but that I could feel some spinning and dizziness as an after effect of the BPPV.
Today I went for the MRI (after spending $658 for it-and honestly I am not sure it was necessary but it is better to be safe than sorry). The procedure wasn't too bad. I had an IV in place and they ran the MRI with and without contrast. You just sit in this small space and this machine that makes extraordinary loud noises spins around. The technician provided a blanket and headphones with alternative music-I wasn't a fan of that part. At first I did notice my heart start to race but then settle down. After about 30 minutes I was done and they told me to drink plenty of fluids too when I got home. I did notice after the MRI some minor pain in my stomach that I didn't have before (not sure if this was from the contrast or the MRI itself). I felt fine when I returned home and was able to work out this evening.
Earlier this week I also went to my GI for an update visit. Typically I visit him once a year. He told me I looked super but the last time I had a colonoscopy was in 2011 and I was due for one this year. I told him I had been watching videos on YouTube of competitive eaters and his comment was "Well if you are going to be good at something you might as well get paid for it". This honestly doesn't bother me as I am curious to see what my colon looks like as a normal case in remission and not in a severe flare or have c difficle.
All in all this has been an interesting week medically speaking. With all the doctor appointments and medical visits I had this week kept me pretty busy. It is good to know now I am back to normal and feel well. Over time I have come to expect minor issues like this. However, I always know it is best to push through and know that it will always get better as it usually does.
On a more personal level I am moving next week after living in the same apartment for over 4 years. This welcomed change should be nice as I am moving to a highrise condo. Life is interesting and we have to make the most of it since we only get one shot in this world.
Friday, May 11, 2018
Well I haven't blogged in a while (since I have been feeling good). However, this past week around Tuesday morning I woke up at 3 A.M. went to the refrigerator and was stumbling to get back in bed since I was dizzy and could feel my head spinning. My initial impression was I had vertigo based on everything I read. I never had felt anything like this before. I called my doctor's office and let them know and was able to see my doctor the next day. I went into the office and had mentioned I felt lightheaded and just tired. My doctor looked into my ear and noticed I had a bunch of wax in there. He said I was exhibiting signs of vertigo but there are different causes of it. I had my ears flushed in December 2017 (my first ever) when I was noticing pressure difference and popping in my years). After my ears were flushed I noticed the issue went away. So my doctor called in the nurse and she flushed my ears. After my ears were flushed I noticed an improvement. The day after I didn't feel as dizzy and today I don't really feel much dizziness at all. I felt as if my right ear is better but my left ear still isn't 100%
Today I went to work but felt out of it mentally. It is one of those situations were you are there physically but not mentally. It has been also harder to concentrate as well. The past few nights I have been falling asleep pretty early too and don't have my usual normal energy. It feels as if my mind is cloudy. At times I do have moments of energy but still not what it was before. I might try to work out later as it has been a while and maybe that will help things. It really is never fun felling tired.
Hopefully this is a short term set back. I plan to relax this weekend and won't do a whole lot and just rest as I feel pretty tired. Also I feel a little down since I am not 100%. Over time I have learned though that most of these things come and go. I might call my doctor Monday if I am still feeling this way though.
Friday, March 16, 2018
So for the past week I have some mild cramping in my stomach (no loose bowel movements). Earlier in the week the pain was pretty bad as I was taking a full pill of potassium chloride. I then backed off the full pill and cut back to half a pill (by cutting the pill into two with a pill cutter). Last Sunday night the pain was so bad I took a hot bath and put an ice pack on my stomach. This did help some but Monday morning when I woke up the pain was gone after getting a good night rest and I did have minor cramping later in the day but nothing compared to Sunday night. As I right this I have a very very minor bit of cramping but have been able to work out as usual (when I have time after work).
The whole reason I took potassium chloride was to provide more energy. When I took the first couple pills I did feel as if I had more energy but recently when I have taken them I haven't felt the same boost. My internist kept prescribing a generic even though the first time around I told him that I was getting cramping from taking it. Honestly, since recently it hasn't had much benefit and has created so much cramping I just won't take it until I can get the non generic version.
Feeling cramped I also feel bloated and although have been trying to loose a couple pounds (as I write this I am between 168 and 171 pounds-moving closer to the 168 recently). I honestly do like feeling fit and lean. Also I am a big fan of eating desserts every now and then and wouldn't mind having some spare capacity.
All and all though I really can't complain about my Crohn's. I plan to take my Humira shot this weekend and besides the cramping haven't had any real medical issues which I am always grateful for.
Saturday, February 10, 2018
Well last evening (Friday night) or this morning depending on how you want to look at it was quite busy for my bowels. For dinner I had some pasta with garlic cheesy bread which was quite tasty and then around 10:30 P.M. I got a craving for some desserts since: I had been tired from the previous week at work, hadn't had dessert in a while, and had worked out earlier in the evening. Typically I have some dessert places I go to but I went to Buccee's last night for an assortment of different goodies (the best way to describe the place is if you mixed a Wal-Mart supercenter with a convenience store. I checked out some desserts and settled on a mini pecan pie, a chocolate chip cookie, and some walnut fudge. I ate the chocolate chip cookie and the walnut fudge and was in dessert heaven feeling quite a high (yes they were that good). Heading into bed I feel this extreme pressure in my stomach that I knew wasn't good (there wasn't much pain more of cramping). Then a few hours later I was in bathroom having multiple bowel movements. At first they started off solid and about an hour or so later they were pretty loose. In my mind I kept wondering when it would end. Well around 2:00 A.M. my bowels were finally empty and I felt amazing with no pain or cramping and was able to go to sleep.
Now the question is what caused this? Honestly it has been many months since I have had a single episode of diarrhea (which I view as quite a significant accomplishment). If I do ever get diarrhea it typically is the week before I take Humira (which this was). This past week at work has been quite busy and I honestly can't remember having as many meetings as I did as this past week. The last item that I believe may have caused the issue was beginning to take potassium chloride. In my last physical my internist mentioned my potassium levels were low and that I either could eat more potassium foods to increase this. However, I tried that and was more open to fill the prescription. Going to my local pharmacy I got my prescription and noticed the prescription for potassium chloride was cheap (it as a generic of course). One thing I did notice was "not to lie down for 30 minutes" on which honestly I thought was interesting since I honestly can't say I have seen that ever written on a prescription. After starting to take the prescription I noticed cramping (which is a side effect that is reported) for many days. On the flip side I was noticing much more energy and felt quite good. I asked my doctor about this (I also had my ears flushed with water to remove wax-it was an all encompassing day) and he mentioned that the generic drug doesn't have as sophisticated delivery system of a time delay release so the medicine will released over time which reduces the burden on the bowels. When I went to refill my prescription for the second time it appears I again got the generic version (this was frustrating). Next week I plan to call my doctor and ask if they can get the name brand or maybe I have to call my insurance company for this.
Today (Saturday) has been pretty relaxing. I had some minor cramping but nothing compared to last night (early this morning). It was surprising today too since I didn't have any bowel movements. The cramping today has been more in the background which isn't too bad. Also I haven't been too hungry either. At any rate it would be good to get the cramp free version of potassium chloride since it does give me more energy than I usually have which can make a big difference.