Grandma Passing, Stress, and Minor Cramping

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.

Recent Weight Gain/Loss

I apologize for not writing in quite some type. Work has been very busy and I have also been studying for a board exam as well. Also I have felt remission free as well so nothing really to blog about. One thing that has changed recently is my weight. No I haven't been losing weight but gaining weight. Most of my life I was always on the lean side maybe 150-165 pounds mostly and I am 5'11. When I was maybe in middle school I was heavier but then when I was about 16 I started working out. I really do love to work out. After working out I always like feeling that burn either from going on the elliptical or using weights. Unfortunately I have been so busy that I barely had time to work out. Also add in the fact that a couple of weeks ago it was my birthday which made it dessert galore (which I almost can never pass up). 

My weight peaked out at 180 pounds which actually puts me in the near overweight category from a BMI metric. I honestly hadn't been paying attention to my weight. The only thing I noticed was it was harder to fit into my pants. I can't believe when I was in the hospital I weighed 125 pounds. When I last blogged about my weight gain was back in 2012 when I was only pushing 162 pounds (even my father made a comment about my weight gain). Something is different about then and now. When I look at myself in the mirror these days I actually look in good shape since I have been working out. Also over time I have spend more time toning my muscles which gives me a more defined physique making me looked more filled out compared to thin frame. 

I have been working out recently to bring down my weight from the 180 pounds to roughly now 176 pounds which isn't a lot but I want to still continue down the path of good health. Also I have been practicing eating healthier and have been buying grapes as a snack food to eat instead of my usual chips and cookies. I think in the long run paying attention to my health will make life easier down the road. Hopefully these small steps now will pay off in the long run. 

Update: Feeling Better No Flare/Took Humira

So in my previous post and I talked about my mini flare that I had in the prior week. I have been doing better ever since. I had felt some cramping and had a few loose bowel movements but it tended to get better towards the end of the week. My sleep has been pretty good. What is really strange is that this morning I went to sleep at around 4 A.M. and woke up around 9 A.M. and felt a little tired but not as much as I usually do (or the abdominal cramping I have when I typically don't get my sleep. 

It looks like my mini-flare was thankfully was short lived. I haven't woken up in the middle of the night for any bowel movements. Tonight I took my Humira shot and thankfully nothing leaked. I would estimate that pretty rarely do my shots leak. Thankfully I am feeling good and intend to keep this up! 

Feeling Pretty Good Lately

So this weekend was a little interesting. On Friday I was feeling pretty good (I actually had a date that night but had to drive over an hour an half away). I took my vitamin D on Thursday so it really gave me some energy on Friday. However, before I took the vitamin D I was having some minor cramping and blunt pains in my stomach. Anyways, Friday night I was feeling good and stayed out pretty late and had a minor amount of alcohol. I got home pretty late and was really tired. I think I went to bed around 1 A.M. and woke up 6 A.M. on Saturday morning so I was really tired. I slept a little around 8 or 9 but was still tired. I actually didn't feel too bad early in the morning but after lunch it was pretty tough.

On Saturday I went to bed around 9 P.M. and was really really tired. I woke up Sunday and probably got 9 or 10 hours of sleep (however still a sleep deficit since I only got maybe 5 the night before). Sunday I felt pretty good and felt like I had good energy. My father at dinner made the comment that I looked tired though. This evening as I write this I feel pretty good but feel a little tired around 9:30 P.M. and plan to go to bed a little earlier tonight. 

I am glad I am still in remission and every day am thankful that I am not on the toilet or throwing up. I started Humira 3 years ago this month and haven't really looked back ever since. Hopefully this will continue for years to come. 

2015 Getting Off To A Good Start!

You probably thought I got hit by a bus due to the lack of posting on my blog. I am perfectly okay and doing well however have been so darn busy with work and a designation I am trying to get. Anyways, my health is still very good. The only slight annoyance is that I have blepharitis (which is an irritation of the eyelids). An ophthalmologist I saw gave me some antibiotic drops and some scrubs which seems to have helped. Today was the first day in a while I actually wore my contact lenses for the full day and really didn't seem to have any issues. Usually it takes a few days or so before my eyes get all red again. Anyways, that seems to be somewhat under control.

My Crohn's is really under control. A few weeks ago I took my Humira shot and didn't inject it properly I think because some liquid came out (more so than normal). My stomach had cramps for the next couple of days after but slowly went back to normal. The biggest thing I have noticed is that when get 8+ hours of sleep I feel amazing. Today while I was getting my car washed I read a Time magazine article about the important of sleep (not using an iPad, iPhone, or anything else that lights up before bed was mentioned). I do have a tendency to watch T.V. right before bed and sometimes look at my iPad (on top of the fact that I also work out around 7 P.M. which is a big no no. Anyways, sleep seems to still be beneficial. 

I have my regular update with my GI in April this year and as usual I will type out my list of questions and symptoms (to try to make his job a little easier). I really have no complaints. I switched over beginning January 1, 2015 to a new insurance (my father had a group plan policy from the company he retired with and due to COBRA rules I was able to stay on until this year). The policy seems to be okay so far. The Humira I order is still covered and they are still able to ship the produce from a specialty pharmacy to me. 

So I have stopped posting updates to new therapies in Crohn's because they now seem to happen all the time!! Every day it seems as if there is a new study, new drug in trial, or new insight that was not known before. The goal of this blog has always been to inform and educate people about current and new information related to Crohn's. I think down the road as I get more time I will post more Weekend Links of some good articles (sometimes those take a while to collect). It truly is amazing how the treatment for Crohn's continues to improve and the knowledge is rapidly expanding. Hopefully, one day we will find a cure and help people and families end the pain and suffering due to Crohn's disease (and ulcerative colitis). 

Halloween Trick or Treat Mini Flare: Helped by Sleep

So last night was Halloween and to my surprise I didn't eat really any candy however that same day I stopped by Dunkin Donuts for a chocolate glazed donut (quite amazing) and for lunch had a chicken and cheese quesadilla followed by Dominos Pizza for dinner. We tried to order Papa John's however they had a wait of 2 1/2 hours. You don't have to be a nutritionist to know that this was not very healthy. When I was younger I use to remember on Halloween walking up and down the streets of the neighborhood trying to accumulate as much candy as possible and then returning home and trading my sister (one year we mixed up the candy piles and both got into trouble).

Anyways so although I did not have any candy however didn't probably eat the best things I did feel some cramping around 9 o'clock and was over at my parents handing out candy. When I came back to my place I had about 3 bowel movements in probably an hour or so that were all loose (however I did feel better after it was over). I took a hot bath after and felt really good (no heating pad needed). Also I feel asleep around 11:30 P.M. got up an hour later and had a chicken and cheese sandwich since I was hungry and went back to sleep and probably got a good 8-9 hours of sleep. This morning I woke up with no pain and felt back to normal. For some odd reason if I do have a loose bowel it is the week before I take my Humira shot.  I should point out that Friday morning I woke up around 6:30 AM and was up for a while before going back to sleep and getting up for work. I had a cramp most of the day (I think due to lack of sleep). However, I also think it may have been a hunger pain since after I had lunch it went away.

The moral of the story is sleep seems to have an important factor for me. I don't know if the fact that the immune/body is resting and therefore has a healing aspect to it. It would be interesting to measure inflammation rates in IBD patients who get more and less sleep. No doubt though sleep really does have a great benefit.

Latest GI Checkup: Doing Well

So this past Thursday (October 2, 2014) I had an appointment with my gastroentrologist. I usually type out a summary of the drugs I am taking, my symptoms, and any questions I may have. Also I gave my doctor a copy of my Crohn's history with any major events that I made myself. I feel it is always worthwhile to keep good records (not only for medical history but also because I think it is nice to have some type of archive of your own life). What is funny is he was telling me how patients can come in with binders showing how many times they go to the bathroom, pass gas, and what they eat. My doctor said he tells patients to just throw out all the binders about what they eat and other data. He had a really good line which I have thought about some. He was pointing out that in managing chronic conditions the goal is to make them so they don't feel chronic. The point being that if you are recording your every breathe, what you eat, what you do, essentially you are worrying so much about your condition that worrying becomes part of the chronic condition. At the end of the day if you don't feel well you will go to the doctor and they will try to fix you.

Anyways my doctor in my visit asked if I was OCD when I gave him full history of my Crohn's disease. I laughed because I actually am not OCD and told him I just like to keep detailed notes. It was interesting that from the last time I saw him (back in April).  From the last time I saw my doctor I lost about 1 pound which is interesting since I would have thought I gained a couple of pounds. In another month or so I go for my annual physical so I will see how I am doing overall. Anyways one of my questions was if my doctor has started using Entivyo which was approved earlier this year for Crohn's. My doctor mentioned that he to date hasn't had any experience yet however he wants to wait until the drug has been out a while (I guess to see potential side effects and see if it can work). Also I asked about the Cologuard test that also came out earlier this year. His comment was that the test is good for finding polyps, however not very good at finding cancerous polys (his observation was that this was almost a backwards way of doing it). My believe is that as time goes on the technology will continue to improve and get better at not only finding regular polyps but also cancer polyps as well. My last question was when my doctor thought I needed a colonoscopy. His response that since Crohn's patients have an increased risk of colon cancer usually around 7 years after diagnosed is when a colonoscopy is done. Of course if there is an issue it will be done sooner.

Well I am happy I am in remission and have been for quite some time. Truly I am lucky and grateful that Humira is still helping.

Humira and Weight Gain

So recently I have noticed that my weight seems to stay the same (despite the fact that I work out almost everyday). Usually I spend around 30-40 minutes on the elliptical and burn 300-400 calories. When I was in graduate school I was able to work out everyday and burn about 500-600 calories per day and worked out every single day. Also I was walking a mile or two every day to class so that was also working wonders probably. To me it feels like my metabolism is slowing down. For instance, if I work out and cut back what I eat it may take a couple of days for my body to adjust (similar to if I eat a bunch of stuff it takes a while for me to put on the weight). Right now I am about 168 pounds. I would like to get down to around 162 pounds or so. I think I was too skinny before I had Crohn's and enjoy being a little filled out but also like to be comfortable in my clothes. Also I am getting older as well. I turn 28 a couple of weeks ago and maybe getting older is your metabolism slowing down. My internist mentioned that he would prefer I have some extra weight in order to buffer against a flare up. Apparently I am not the only one who has gained weight while taking Humira (an anti-TNF drug) I found this article with others who have gained

Humira is obviously suppose to stop the inflammation due to Crohn's and make me want to eat which is good (at the same time it is nice to feel slim in my work pants). I can still remember when I initially had Crohn's I was down to 125 lbs and came out of the hospital all my pants were too big for me! Most of my adult life I have been probably around 148 pounds-158 pounds. I still remember when I was working out in graduate school up until a few weeks before I went to the hospital and remember getting on the scale and thinking "gee maybe this scale is broke!". Little did I know the scale was actually correct.

Update: So I was working on this blog post the past week and actually started losing a few pounds. As of September 6, 2014 I weigh about 164 pounds (down about 4 pounds or so). I really have been eating well (I feel a little better too). Mainly I have ate salads for lunch and apples after I get home from work.

P.S.-In the picture of have posted for this blog post I think Crohn's looks like the first guy and currently I looked like the second guy (even though mentally I feel like the third guy). 

Update: Car Accident, Sleep, Cramping, and Easter

So this week has been a crazy week. On tax day (April 15th, 2014) I got into a car accident. Luckily I wasn't serious hurt. My back felt a little bit sore afterwards, however that seems to be going away. Dealing with the stress of getting the car towed, talking to the insurance company, working, and studying, does get stressful. I also moved in to a new apartment so I have been pretty busy trying to knock things out and take care of things.

I have been cramping a little bit. I honestly think it is due to lack of sleep. My apartment has a window that lets a lot of light into it. In my old bedroom I had plantation shutters that could block that out (which I like). Usually my alarm on my iPhone wakes me up. Anyways, some cramping and feeling tired from this. I have been okay otherwise. Last weekend I had some fast food since I was moving in and didn't have very much in my apartment. I can honestly say I felt pretty good even after eating it. At night I still sometimes use ice packs. This weekend I will try to get more sleep and not feel as tired. This morning (Sunday) I woke up and was a little tired (even after 9 hours of sleep) however sometimes your body has to get going in the day to wake up.

On Monday I see my GI. I have some questions for him in terms of how useful Asacol is. There is a rebate program that allows you to save $200 on Asacol, however it is a pain to deal with and I had to get multiple cards from my GI and resubmit them to Asacol in order to get the drug. I hear Asacol is going generic so I will have to ask him about that. When I see my GI I usually type out my list of questions because sometimes I forget what to ask and I only am allowed probably 10 minutes with him.

All and all things are pretty good. I would like to improve the cramping some. Not sure what my weight is these days since I don't have a scale (update I have a scale and now am 168 pounds by Saturday this was down to 164 as I worked out for the week).  I have been working out in the apartment gym which is pretty nice. Today is Easter and I will be having dinner with my parents at their home. Most likely we will just be having Mexican food takeout.

I can't complain too much. Crohn's is a lifelong disease and chronic. Feeling 90% is a great feeling. I often am grateful there are medications like Humira and Asacol now and glad I didn't get this disease in the 1980's or early 1990's. Hopefully the future will bring even a better understanding of Crohn's and how to treat it to improve the quality of life of so many people.

Weekend Health Update: Less Cramping, Dry Nose (Still), and Sleep

So this week my stomach was a tad better. The beginning of the week brought some cramping but cleared out toward the end of the week. The ice pack at ice seems to help out. I tend to have cramping after I take Asacol. My nose continues to be crusty and dried out. However, I am thinking in the next few weeks we should get more humidity and help out. The thing that bothers me is sleeping. My whole life I have been a late night person and usually on weekends I fall asleep around 2 a.m. but my mind keeps going for a while. I sometimes wish I could start work at 11 a.m. (I could probably work more hours and be more productive). Today I felt like I got a pretty good rest however my body is trying to make up from the lost sleep from the beginning of the week so. I was worried I wouldn't be feeling well since some of the Humira injection came out 2 Friday nights ago when I injected it.

Next week I move into an apartment (I have been living at home a while-saving money) and working). I get a little nervous that I might get a flare up, however I am pretty sure I have a flare up it won't be as long as when I was initially diagnosed. I just saw a study that showed that about 21% of Crohn's patients missed >25% of work in the previous week.

I am just glad I am feeling good these days and a far cry from last year when I went many months with c difficile!

Humira Dosage Didn't Hold In Long Enough, Sleep, and Feeling Pretty Good

So my health has been doing pretty good. This past week I have been eating salads at work for lunch to try to be a tad healthier but always find myself hungry. This evening around 10 PM I had a semi-loose stool. However I forgot to take my Asacol this morning (I had to go into work for a few hours this afternoon). Also a few weeks ago on my Humira shot I didn't hold it in long enough and some of the medicine leaked out which is never good and sometimes take a while before you notice the results. The only other thing I have noticed is I probably need a little more sleep. At night I do have a little bit of cramping and get use a cold-pad from Walgreens that seems to help out but it doesn't seem cold enough and just cover the sides of my stomach. When I get a bag of ice and place it over my stomach it feels pretty good however you can't leave it on too long or else you end up with a  Last night I got a decent amount of sleep (8.5 hours most likely) and my mind seemed pretty active. Normally I get to bed around midnight (after watching Fresh Prince of Bel-Air) and wake up around 8. For some reason my body isn't always asleep. I remember the one time I slept for about 10 hours and felt like I was cured of anything I ever had. My work schedule has been busy with projects (more stress than usual). In order to relive this stress I plan to take a road trip in a couple of weeks for the weekend which usually does wonders in terms of relaxation and stress. I plan to see my GI doctor in April for a usual checkup (it is actually good when I don't have to see him since it means I am in remission).

I am glad I am not where I was last year with c difficile and a fecal transplant. I am always happy and grateful to be in remission but as even I know Crohn's is a lifelong illness that will be with me for the rest of my life (unless there is a cure). The only thing to do is take it one day at a time and live everyday to the best I can.

Stress and Crohn's: December Update

So recently I have feeling a little odd. My schedule at work is super busy (I literally am busy from 9-5:30 with no lunch break). Not to mentioned I am a little stressed out with an upcoming exam on Saturday. I have been having solid bowel movements but some cramping at night. My bottom feels a little odd (hard to explain). At night I have been putting ice packs on my stomach. I usually feel best in the morning with no pain and seem to have it more as the day wears on. I have been stressing out over a bunch of things. A couple of things could be happening. The Humira could be losing its effect after one month or the stress could causing me to have a mini flare up.

So today (December 20, 2013) I have been feeling better than yesterday. My bowel movement was solid today. The odd pain in my rear is gone. I did feel a little light headed today today. I took off work today for much needed vacation. Maybe my gut knows I am not at work and decide to relax as well. Tonight I injected my Humira and a little leaked. I might feel more pain in a few weeks. I just remember this was happening for a while (many months) before I realized I knew I was doing it incorrectly. I have an exam tomorrow afternoon and will get a goodnight's rest for it. This evening as I get ready for bed I don't really have much pain. I look forward to next week catching up on some sleep.

Crohn's and Dental Health

Today, I went to a periodontist (gum dentist) who said my gums were inflamed and it wasn't due to gingivitis. In the back of my mind I knew Crohn’s might have something to do with it as it can cause gums to be inflamed along with intestines.  This special dentist said that I needed to get a deep cleaning of my gums and they would have to do a biopsy of the gum to see what the cause was. It is odd though because my bottom gums are healthy pink just my top gums are causing trouble. I was a little nervous when the dentist said I might have to go on a steroid. This seems interesting because from what I understand drugs like medicine can cause bones to be weaker. Also I am weighing around 156 (with clothes off) these days and really don’t want to add any more weight when I use to be 140-150 lbs.

I did some research and found a forum were people discussing this similar issue.  In doing more research I found that Crohn’s patients perceive their oral health to be worse than people who don’t have Crohn’s.

This study from 1989 showed that Crohn’s patients have a higher risk and need more preventive care. Although these studies link certain things I would be more curious to find out why gums can become inflamed. My own theory is that autoimmune diseases have to deal with the good bacteria attacking the body which is what causes the inflammation which could be happening in the mouth. Although, the mouth and stomach are far apart I am reminded that the definition of Crohn’s is pain from anus to mouth which includes the gums. 

Humira and Fewer Heart Attacks?

Good news just came out for those who are taking Humira (well for at least psoriasis anyways). In this news report it appears that treating psoriasis with drugs that inhibit TNF (tumor necrosis factor) could possibly reduce the risk of myocardial incident when compared to other possible treatments. The way I understand psoriasis is that it is an autoimmune disease like Crohn’s however leaves people with patchy and itchy red marks all over their body which doesn’t seem very pleasant.

 In the study Dr. Jashin Wu looked at treatment information and new diagnosis for 9,000 people with psoriasis. In the study which looked at people over 4 years after treatment there were 3.05 myocardial incidents per 1,000 patient years as compared to 3.85 myocardial incidents per 1,000 patients years. This was also lower than the 6.73 rate for patients who took topical drugs. TNF inhibitors may have a 21% lower myocardial risk when compared to other drugs. TNF drugs are drugs like Remicade, Enbrel, and Humira. Hopefully in the future we will have more of these types of drugs to increase competition.

The question of the hour however would be does this study translate into meaning a lower chance of myocardial incidents for Crohn’s patients? My guess is maybe but since Crohn’s is a gastrointestinal disorder maybe not. What probably should be studied is how anti TNF drugs like Humira, Remidade, and Enbrel lower the chances of having a myocardial incident.