5 Year Humira Anniversary Still in Remission

Well I have more than passed the 5 year mark for taking Humira for my Crohn's disease. My first injection was back in June 6, 2012 which honestly at the time I thought Humira would help somewhat with the stabbing pain I was feeling in my stomach. After taking 4 original doses for the starter pack I noticed a noticeable difference within the first couple of weeks. Back in May 2012 I was feeling awful and had this shooting pain in my stomach. I remember helping my parents move to a new home and just moving simple things felt like a struggle. It got worse when I would be up late at night throwing up and thinking how is this happening. My GI then put me on Humira after using prednisone as a backstop. I started blogging about my experience with Humira after 3 months on it here.  When I got c difficle back in 2013 which I believed caused a flare up my GI increased my dosage from every other week to once a week temporary and I was back on track. Back in June 2014 I blogged about my 2 year anniversary on Humira. My most recent post on Humira was why I don't rotate my shots.

In 5 years I never missed a Humira shot either (this coming from a guy who only missed 1 day of school from kindergarten to senior year of high school). Generally I take my shot on Saturday evening. I have a couple of times taken it on Sunday or at the latest Monday. There were times I did have some leakage in the shot which is frustrating but honestly I couldn't tell any drastic differences in my health for that. My advice would be make sure you take your Humira shot! Yes we are human and forget things but you if you have to add a reminder to not only take take your shot but also reorder it. Up until age 26 I was on my parent's health insurance plan because it offered great coverage and my employer didn't have a plan. A few years ago the company I worked for added a health insurance plan. The old plan I use to have made it less of a pain in ordering Humira (they would give you 4  shots of Humira. My current orders only allow me 2 shots at a time (which means I have to call every couple of weeks).

If someone had told me 5 years ago that I could take a drug that would leave me with little to no stomach pain I would have thought they were crazy. I am glad my GI identified taking this drug early on in my Crohn's diagnosis. I have been to CCFA meetings where patients try all different types of things (Prednisone, Remicade, and others) and nothing seems to work. I feel truly lucky and amazed at how well Humira has worked for me. I know in the future my health may have ups and downs but I believe more progress will be made in future regarding the treatment of Crohn's disease. 

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! 

Current Update: 5 Bowel Movements in One Day (Solid), Waking Up At Night, Humira Leaking

So the past few days have be somewhat odd health wise. Let me start with Saturday. So Saturday night I took my Humira shot and there was more leakage than normal. It is somewhat hard to inject on the stomach (even though I do have some fat). I held the pen in for a while and didn't pull away (the key is pulling it out once the color changes to yellow). Speaking of which I switched insurance companies and my GI has to pre-authorize my Humira so tomorrow I have to get him to call the company that delivers it to refill my prescription. I always get a little sad when I don't get my full Humira injection since I know the Humira is blocking the pain. Anyways most of Saturday I was pretty tired and a little irritated (I usually am this way when I don't get my sleep). Also I worked out over the weekend trying to shed some pounds. Right now I am about 169 pounds (I would prefer to be closer to 165).

Since I was tired Saturday I got some high quality sleep on Saturday night. I went to bed around midnight and woke up around 10 A.M. All I can say after this is wow what a difference! My body felt relaxed and in the zone the whole day and I really felt good.

This bring us to today. So at about 3 A.M. I woke up for no apparent reason and was wide awake. I first tried having a snack and that didn't work. After the snack I tried watching T.V. and that oddly enough did work (even though they tell you  not to watch to TV or look at your iPad before bed). Anyways I watched T.V. for about an hour and then passed out and woke up at around 8 A.M. thinking wow that sleep was way too short. It was odd though because when I woke up I strangely felt I had enough energy to last me throughout the day. While at work today I noticed the urge of having to pass gas and also having many bowel movements. Usually I track how many I have but I haven't done that in a while since I usually only have about 1-2 per day. Well today I would estimate I had about 5 bowel movements. What is interesting though is that they were all solid and seemed to be in shorts spurts. After the end of the day I felt a little light headed (I guess from all the dehydration). I felt I had lost a few pounds in the bathroom but when I weighted myself tonight it was basically no change.

My theory is that the Humira does work when I take it properly. Also sleep seems to play a role in my Crohn's as well. When I get 9+ hours (which is rare) my stomach is great but when I don't get a great rest it feels as if someone is very gently attacking it. If my symptoms continue I may go to my GI. Usually these things (especially if there is no diarrhea) come and go.

In other health news my parents think I need to get my lymp nodes checked out around my neck-I keep playing with them.

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). 

Humira 2 Year Anniversary: Still Going Strong

So I started Humira June 6, 2012 and really haven't looked back ever since. My first post on Humira was about 3 months after taking it here. I still remember feeling much better a week or so after. The worst probably time in my Crohn's timeline was in May of 2012 (my initial visit to the hospital wasn't too bad considering I had someone always monitoring me). I actually can still remember being up to 2 A.M. in the bathroom and actually vomiting. My GI had put me on Asacol  when I was first diagnosed and Prednisone. However, the Prednisone was always a spare tire (and I think made my hair a little flatter even to this day). In retrospect I wish I would have started Humira earlier in my treatment plan.

The only thing that derailed my Humira treatment was my c diff which sucked (and I had to go to my internist to actually get fluids) and ended up getting a fecal transplant which luckily cured it. The only side effect I have noticed from the fecal transplant is that I am a little heavier than I usually am-and my thighs are a tad bigger. The one thing I learned about Humira is to make sure you hold in the Humira pen long enough to make sure you get the medication. If there is any fluid leaking then you are not holding it long enough and not getting 100% of your medicine!

If someone had told me I would have gone two years with very little pain I would have thought they were crazy. When I was first diagnosed with Crohn's I thought I would have a pain for the rest of my life. When I was initially diagnosed with Crohn's I did have some what I would call light depression (of dealing with a new disease). This study from 2013 showed that patients can go 4 years and more on Humira. This Japanese study showed that Humira was effective for long term use in patients with moderate to severe Crohn's. These days I am more positive given how much has changed (even since I was diagnosed) and new drugs continue to get developed. People always seem to come up with ideas and products that we haven't even thought of or could never imagined. Hopefully, the future will be bright with new discoveries and eventually a cure to a disease that impacts so many people and families. 

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.

Going Back To Humira Every Other Week!

This year has been an interesting journey. At the very beginning of the year I caught c difficile (my internist doctor doesn't believe so since I didn't have symptoms of fever) which lead me to try Dificid many times and went up to Mayo twice (first to confirm c diff and the second for the fecal transplant). I then was still having issues and my Humira was increased on June 14, 2013 and I discussed in this blog post only to have a solid bowel movement by August 25, 2013 (I can still remember it). At any rate I am feeling pretty good these days with only very very minor pain (probably .25 on a scale of 1-10)

My GI called right before lunch today and told my blood test with great results and we were going to decrease the dosage of Humira from every week to every other week. When I met with him in person (we met for about 10 minutes) I asked him since I was use to the dosage every week would my body build up a tolerance. His response was it shouldn't and I should be okay even if we scaled back. Hopefully this turns out to be correct. The c diff could have caused a minor flare up which made things worse for a while but it honestly didn't feel like a flare up (I was going to the bathroom at night which didn't even happen when I as hospitalized in 2011). At any rate this is great news and that would be truly amazing if I could get off Humira completely (I might need some more of those cold pool swims!)

Weekend Mini-Flare Up?

So for some strange reason sometimes on the weekend I can tend to flare up and then things to back to normal. Last night I had a cookie sundae (which was very good) but after a while I had a mixed bowel movement. I had a mixed bowel movement the other day but then the next day it was a solid movement. It was really strange because last week at work I was working more hours than usual but I was very focused and seemed to be "in the zone" (even more so than before I had Crohn's). Sleep seems to have a largest impact on my symptoms. I really have not noticed much pain and I am trying to go light on my foods (I am going to try this week at work to cut out chocolate and see how I feel). My weight is above 160 pounds (highest it has ever been but I don't feel bloated). Last night I went to bed around 3:30 A.M. (I guess I should say this morning). I was wondering about what would happen if I am in the middle of a flare. Would I go on Remicade? Would I need surgery? Is there some other treatment I could try.The other thing I noticed was that my skin did break out a little bit while I felt very minor pain in my stomach. Perhaps this has something to do with inflammation (when I was younger I had acne on and off for years) and my understanding is acne is just inflammation of the skin just like Crohn's is inflammation of the digestive system attacking itself.

As I mentioned in my last post my anal fissure (or whatever I had) seems to be going away. I really feel back to normal in that area. I am curious to find out what it actually was and what caused it. I see my internist this week so I will get his thoughts on it.

Defecation Syncope with Crohn's, Dicyolmine Stopped, and Possible Humira Dosage Cutback

So on Monday September 23 I was on the toilet around 10:30 A.M. and noticed a cramp in my stomach and all of the sudden passed out while on the toilet (I didn't fall off or hit anything). However, I remember getting a flush feeling spacing out and then gradually coming back to my senses. I was probably out for a minute or two at most. It was a very odd experience. When I had a bowel movement tonight I was worried I would pass out but I was fine.

It was nice because later in the same day I went to a GI who said it was defecation syncope. He said it can actually happen to patients while coughing or urinating. Although, he said it was pretty rare which worried me a little bit. I did some research and it can happen although isn't life threatening even though I read you can die from it within 2 years due to underlying conditions (the underlying conditions are life threatening themselves).

My GI told me to stop dicylomine yesterday (I believe this might have caused the defecation syncope). Dicylomine just treats the cramping. Also I have been feeling very good (100% in fact) and asked if we could scale back the Humira from every week to every 10 days or every other week. My GI mentioned that he wanted to see me on a Thursday (I usually do my Humira shot on a Friday night) to do a blood test and see how much Humira is in my blood.  Depending on the blood test my Humira might be cut back.

Today I saw my regular doctor to follow up with the defecation synscope and a blood test was done along with an EKG (just to make sure there are no heart issues. My doctor mentioned that since I am on such odd drugs it wouldn't hurt to do such tests. I seem to be more proactive with my health these days because it seems like you get one thing and realize it lead to something else or be something else (initially a resident believed I had celieac disease, while my father after much research thought it was c difficile, while my doctor said he wouldn't be surprised if it wasn't an infection (meaning c difficle). What was interesting is my doctor use to work with a GI who saw plenty of Crohn's patients (300 actually). What this doctor noticed was that after everything was tried sometimes Flagyl would help patients. However, no one knew why this worked. This came from experience and couldn't be explained by any evidence at the time. These days more researchers are studying why this actually works.

First Solid Bowel Movement in Over 7 Months! Humira is Working!

So today something pretty wonderful happened. Not only did I get 10 hours of sleep (I felt quite amazing today as a result), but I had my first solid bowel movement around 4 P.M. (I only had to go once today as well)! I was so happy since I haven’t had one since January 6 of this year! Although, it is good, I hope this continues into the near distant future. I have notice for the past week my bowel movements looked a little more solid. I have noticed I have gained weight and now weight about 152 lbs which is pretty good (I was about 142 a few months ago).

One theory might be that the c difficile I had previously is now out of my system my colon has actually been healing for the past week months. Also my dosage of Humira has increased (it actually more than double since for a few weeks I was injecting it incorrectly as some of the liquid was leaking because I wasn’t holding the injection in long enough). Hopefully this is the start of more things to come!!

Reaching a Crohn's Plateau: Humira Every Week Still Having Diarrhea

So today (August 1, 2013) I went to see my gastroenterologist who was following up increasing my dosage of Humira. My health has been decent however not the same I was when I originally started taking Humira. I am still having diarrhea about 4-5 times per day. My pain level is decent. Most of the day I go without pain.

My GI said the goals for managing Crohn’s are making sure patients are eating well, not tired, no fever, and decent energy levels. My parents were not aware of this and they were thinking I would go without diarrhea. I mean it is sad in a way for now I will continue to have diarrhea. However, I know that as medicines progress could really improve not only my quality of life but the over 1.4 million people with inflammatory bowel disease (IBD). One good thing is that today if you have Crohn’s or ulcerative colitis you have more options. If you had Crohn’s or ulcerative colitis in the 1980’s or even early 1990’s you really only had a the option of Asacol or Prednisone. Now there are biologics, 6-MP, methotrexate, Asacol, Prednisone, and surgery. The surgery that can be done now is much minimal with surgeons taking out less of the colon and intestines and less scaring which is positive.

My doctor told me in the next year or so interlukin’s could be the next big thing for IBD. I believe STELARA is one of these since it targets interleukin- 12 and interlukin-13 which targets inflammation for Crohn’s. I covered STELARA here and the results from a trial.

The plan my GI laid out was to do a C-reactive protein test and to consider giving me anti-diarrhea/anti spasm medicines. Recently, I have been having IBS like symptoms. The idea is that this should do some good. I e-mailed the doctor I saw at Mayo and to get his thoughts and he suggested to a c-reactive protein test, in addition to a CBC (complete blood count), and c difficile test (since I did have c diff for so long). However, his recommendation would be to include 6-MP or methotrexate with the Humira to give it a boost. My GI today said that white males who are young have an increased risk of developing lymphoma (however the increased risk is on a percentage basis). I did some research and the risk was about .1% which is about 1 in 1000 (however it is still there).

I have been thinking about what I eat and last Sunday I ate a brownie sundae with ice cream and some Mexican food for dinner and really felt it. I think food has a role, however I think some people might overstate its impact. With this said my internist recommended a nutritionist who I have thought about seeing. The most I could lose is actually eating a well rounded diet. It would be nice if I could figure out if I have trigger foods. In general I think chocolate might make me worse and anything greasy. However, I still have pain if I have chicken noodle soup so. 

Feeling Better and Worse (1 Month After Humira Dosage Increase To Every Week)

So I have been quite busy/haven’t had internet for almost a week (via Comcast). At any rate my Crohn’s health is both good and bad at the same time. So it seems as if I still have diarrhea (about 4-5 times per day). Although, the other day I did notice that I only had about 3 bowel movements when I ate a little bit lighter. When I ate some rich chocolate cake I had some diarrhea and some pain after. My weight is pretty good and I am at 145 lbs (with hardly anything on). I had a cheese omelet and felt pretty good. It seemed as if the other day when I ate lighter I didn’t have any pain at night (which felt nice). The only other symptom I have notice is very minor joint pain in my wrists (this comes and goes though).

Next week I see my GI and plan to tell him how I feel. I really think diarrhea for nearly 7 months is a bit much. Although my Humira was changed from every other week to every week I feel a tad better but not to where I need to be. Mentally I don’t want to change to a different drug because it would mean I am losing my war with Crohn’s. However, I want to feel better. I feel bad knowing that this flare up may have been caused by just taking an antibiotic which led to c diff which lead to the flare up.

I know my options are possibly Cimzia, Remicade, or another biologic. After that maybe 6MP. After that I would be open to try low dose naltrexone (LDN) which has been very effective and I have no clue why the FDA hasn’t approved it for Crohn’s. If this doesn’t work then I might require surgery. I hope I can get back on the right track and get back into remission. It is time for me to get my life back. 

Feeling Better But Not Great (Taking Humira Every Week)

My dosage on Humira increased from every other week to every week on June 14, 2013. So really it has only been a few weeks since I took Humira. After the fecal transplant I have overall felt better (more energy, not dehydrated, and I seem to have gained a few pounds which is good). My own personal theory is since I have had diarrhea since January 6, 2013 my colon and body has been through a lot. So I would expect it to take some time given how much I have been through. I really hope the Humira works. In my mind I wonder what the next step is if Humira doesn't work. I would think my GI would want to try a small dose of Prednisone and if that didn't work Remicade. I have also heard about 6MP which seems to work well in the long-run. I plan to call my GI tomorrow and let him know how things are going.

I honestly don't feel as bad as when I had my flare up last year. I did some research via my GI Buddy App on my IPhone. My pain level was about 4 times as worse as it currently is however my bowel movements were only around 2-3 per day and they were solid. Also last year I was also vomiting which was pretty bad and had a constant pain in my stomach.

2013 might be the year of the flare up. I know Crohn's is something I will live with for the rest of my life. Hopefully through this blog I can spread knowledge and awareness and hopefully in the future uses more of my time and resources to help find a cure for this horrible disease.

Humira Every Week Now

So this past Friday I started my increased dosage of Humira (from every other week to every week). It takes Humira a while to get into the bloodstream and my GI said to call him back within a few weeks to see how I was doing. Last night when I injected my shot I noticed that again nothing leaked out (just like the last time I administered the shot). I had talked to my GI to see if I was administering it properly and actually someone from a at home nursing company can come to the house to make sure you are doing it properly. I also learned that Remicade can also be administered in the home setting as well (hope I won’t need this for a couple of more years). I would think increasing the dosage of Humira and administering it properly will get more Humira into my system.

On a Humira related note a nurse had told me I should look into a program Humira has that can offer discounts on the medication if you qualify. The program is known as the patience assistance program and to my knowledge there really is no financial testing they actually do. Right now I pay $200 for a 2 month supply of Humira which is shipped through Accredo (speciality pharmacy of Medco). When I spoke with Humira they had said they could look at what I pay now and see what I would pay under this program. People can pay anywhere between $5 and $500 depending on their insurance. I will find out more about this on Monday.

My symptoms are the usual (diarrhea, some pain, and tired). On Friday night I did notice some arthritis in my hands and arms somewhat (although I was laying down for a few hours). I have had signs of this in the past little but last night it seemed to show up more. Usually it goes away pretty quickly though and I never notice it during the day.

Today (Sunday) I felt pretty well and had a little less pain than usual. I did consume a large sundae last night and had a few bowel movements after it with some pain. Perhaps me correctly injecting myself is starting to work somewhat. The true test will be once my diarrhea stops though. 

One Week Post-Fecal Transplant, 1 Year Anniversary on Humira, and Getting A Little Better

So it has been just about a week after the fecal transplant. I have noticed some improvement in my condition (less tired, no more blood in stool, less cramping and pain, and the there seems to be less coming out of my bowel movements). Tomorrow I do a c difficle test that will be sent to the Mayo Clinic. However, with this said I am still having 4 watery bowel movements every day. I still am fairly hungry. My weight is around 145 right now (which is what I was at pre-Crohn’s however my weight is normally 152 or so). My mood depends on the amount of sleep I get. If I get a good night’s sleep I feel like I have less pain and cramping and feel more ready for the day. When I get less sleep I feel a little strain in my throat (however I have been using salt and warm water to make it go away). I started feeling better around Wednesday/Thursday and today drove for the first time in a couple weeks. Next week I plan to go back to work and have been off work for almost a month (I am eager to back). I still feel a little tired but not nearly as much when I was pumped with 3 liters of fluids.

My GI did a test to measure how much Humira (Promethus test which is a brand new test) was getting into my blood and he said it was on the low end. Over the past few months I have noticed when I injected Humira a bunch of liquid comes out. Perhaps I am not holding it in as long as I should have. This might be able to explain why I have a low level of Humira in my blood which might be why I have a current flare up. The problem is Humira can take a while to get into the blood system so I wouldn’t really know if my hypothesis is right until a few more weeks. Last night when I injected it I noticed no leakage whatsoever. Speaking of Humira it has been exactly a year since I started Humira. I think Humira has worked wonderfully so far. Perhaps the c difficile and possibly not injecting all of the medicine has derailed me from the right path.  My GI wants to increase my Humira dosage to every week instead of every other week. I asked about using Prednisone and he said we always have that in our back pocket. The long term use of Prednisone can have diasterous effects on the joints and muscles and even put people into wheelchairs. Also my GI mentioned the burdensome task of going to electronic records and had to take a 12 hour training course in order to learn for one hospital. He is no longer going to see patients at the hospital I was treated at originally in 2011 (he would have to learn two different electronic medical records systems and he said it isn’t work the time to learn).

On Monday if I am still having diarrhea I plan on sending a stool sample to Mayo to check to make sure I am still c difficile negative. If I am the Mayo doctors might want to talk about treating this Crohn’s flare up. No question this has to end. As my GI said I see us getting closer to the light at the end of the tunnel. An increase dosage of Humira might do the trick (along with doing it properly. 

C Difficle, Crohn's, IBS, or None of The Above

Today, I went to visit my GI. My symptoms are somewhat bizarre. On one hand I am pain free 80%-90% of the day, have a good appetite (yesterday I felt like I was back in my Prednisone days looking up food), while on the other hand I have had diarrhea since early January 2013 (over 3 and ½ months). I have had minor cramping in my stomach as well. Sometimes I have to get up in the middle of the night to go. My energy level is lower than usual as well.  Speaking of sleep the one thing I have been craving is more sleep. On Saturday night I slept for 10 hours and still filled a little tired on Sunday (although this could be due to not getting much sleep the past week from being up in the middle of the night). For some reason I think more sleep has a positive impact on reducing symptoms since when I wake up it feels like my body has restarted in a way. A few times I have gone in my own bed and my mother washed the sheets. This brings me back to my hospital days when that did actually happen a few times.

My GI said he thinks it could be c.difficle, Crohn’s, or IBS. It was believed that I had IBS right before Crohn’s however my GI said it might have been something else. My internist said someone similar too. I can remember the IBS days of sitting in class getting cramps but also getting a bubble in my side (the kind you use to get in P.E. class).

 I did some blood work today and also did a stool test today that I will bring into Quest Diagnostics tomorrow. Actually, when I was doing the stool test I noticed some blood in my bowel movement which I have rarely seen. Personally, some entrepreneur could get rich making an at home stool test or a test that could be done on the toilet. I may have to go for a CT scan (the barium drinking game) but my GI wants to run the blood and stool test first before he does that.

This year has been somewhat of a struggle. I went on Dificid (which worked for about a week or so), then went back on it (only to learn it failed), then went on Questran (which worked for a while, then stopped working, then worked again, only to stop working eventually).  I guess I am tired of not knowing what is wrong with me which can be frustrating. My GI hopes its c.difficle (I do as well because if it is I will be doing a fecal transplant).

My parents and I talked about seeking out a second opinion. I live in Texas which has a decent Houston medical center however does not specialize in gastroenterology. The Mayo Clinic looks like it has a top notch program and I found Dr. Edward Loftus who seems to have extensive knowledge in Crohn’s and inflammatory bowel disease. As I write this he has over 174 publications in peer reviewed journals. There are of course pluses and minuses to doing this. The first is most likely spending a week or so in Minnesota and getting tests done so they can figure out what is wrong and then giving me a diagnosis.

Hopefully, doctors will figure out what I have so I can get better. I wish science had more answers when it came to Crohn’s. Although, I do know that each day we learn more about Crohn’s: what works, what doesn’t work, which will eventually lead to more treatments and hopefully a cure. 

C.Difficle and Dificid To the Rescue (Humira Working 8 Months and Counting!)

Apologies for not blogging in a while. I have been working and studying for a board exam which has been stressing me out (however not my stomach). What is strange is that while I did a post on c difficile I actually had it and didn’t even know it! The only real changes that have taken place was all the diarrhea I mentioned in my previous post was caused my c difficle. At first I wasn’t too surprised because I didn’t have any pain in my stomach and it felt like I had some type of bug however couldn’t put my finger on it. I took Dificid which was just released in 2011 and seems to have a high cure rate and ran its course on me. Dificid was $115 for 10 days (20 pills). My insurance company actually saved me over $3,000. Of course this is because the FDA allows so few drugs on the market because they require drug companies to spend a decade and hundreds of billions of dollars developing a drug that may or may not get approved. I am all for patients experimenting with drugs that the FDA deems safe and let patients decide if the drugs are effective.

In other news I went to Walgreens to because I thought I was paying a bunch for vitamin D and wanted to get my medicine through Medco because it would be cheaper. At any rate, I asked for my prescription history and actually now have all the medicines I took since I had Crohn’s in 2011. It would be interesting to gather all the prescriptions of Crohn’s patients to see if there are any similarities.

Lately I have also been wondering about diet and Crohn’s. I went to the doctor today to get some blood work (for vitamin D and a booster shot) and was up to 156 which is high for me. Last week I was in training course for 8 hours a day and was eating well at a local diner with grilled cheese, brownie sundae, and an cheddar omelet. Also I haven’t been working out because I have been so busy studying and working. Look forward to working out more.

Humira still seems to be working! I forgot it has now been over 8 months since I started that drug and it has continued to make me well. Every day I seem to worry about the future. I personally would like to see more creative destruction in the Crohn’s research field. A no brainer is to collect data on willing patients with GI Monitor and see if that tells any patterns.  I also have no idea why the FDA bans naltrexone which could be another tool for doctors to use. Fecal transplants I believe could be a game changer for ulcerative colitis. As I mentioned in this post it seemed to put people in remission for over a decade which I would deem a cure. People that suffer with Crohn’s have to take one day at a time wondering what the next day, week, month, even years will be like. We should get people not from just medicine but from engineering, business, and other fields to see if we can improve what we know about Crohn’s in order to take away the pain.

Crohn’s Colonscopy, Humira Still Working, and Health Update

So the past few weeks of my health has been both good and bad at the same time. The bad is I have been having diarrhea. Around 2 Mondays ago I actually had to go to the bathroom 7 times in one day! On that day I took a warm bath and actually felted cured (for about a day). The other side effect was I had a pain in my backside which has happened before but made worse by the fact that I was always having to go to the bathroom. The only other recent symptom I have noticed is when I lay down sometimes my upper chest hurts a little (however I think this too has past. My gastroenterologist did some blood work and a stool analysis and noticed my white blood cell count made him “nervous”. He scheduled a colonoscopy which I happily did today. The prep is always the worst part. At 5:30 PM I started by prep and by 8:30 P.M. I finished 6 glasses of Gatorade + Miralax + the 4 pills. Honestly the first one seemed like twice as many liquids.  I did my first one on November 30, 2011 and this one was done today (January 29, 2013) so a little over a year since they have been done. Personally I would not mind doing them every couple of years just to check and see how things are going. Today was somewhat of a blur since I got up at 6:00 A.M. my parents drove me over to the medical center. I remember looking at a clock that said 8:03 A.M. and then saw my GI in a cold room where they gave me some sleepy medicine and I was out and woke back up again (the procedure only took about 20 minutes). 

The discharge from today had some findings on it. Finds were “Normal mucosa in the rectum” “Inflammation was found from the sigmoid colon to the cecum. The findings are improved compared to previous examinations. This was biopsied”. “The examined portion of the ileum was normal”. “Biopsies were taken with a cold forceps for evaluation of microscopic colitis”. My GI said there was still evidence when he looked inside that there was still Crohn's however the inflammation really seems to have gone down.

It looks like Humira is still working despite the diarrhea. My GI talked to my parents while I was in the twilight and said my diarrhea could be controlled with some Imodium which I had been taking for a while. The worst case was moving Humira up to once a week which I don’t mind either. My GI is suppose to call me with the results in a week or so.  Will have to wait and see.

It is somewhat strange I had diarrhea however no pain. To me it seems more bacterial than a Crohn’s problem. Hopefully this will only be temporary and I can get out of this little funk I am in. Living with Crohn’s does always make life interesting. 

Diarrhea, No Pain, No Vomiting, Gaining Weight = Anti-Crohn's

Getting Crohn’s is always an interesting journey. So the past week hasn’t been the best. I have had what I would call small diarrhea (try to go number 2 and only bits and pieces come out). This has been going on for the past week or so. I did eat a Nestle Toll House brownie sundae and all this started after this however could be a coincidence. Today at work it was really bad. I went to the bathroom between 9-12 4 times or so and felt really bad for missing work. My body was crazy. Last night I was a little blue as I sat and wondered why on earth I would be given such a dreadful disease. I however, thought of the future possibilities of drugs and treatments that might be available and that gave me hope.

What is really odd though is that I haven’t had much pain, vomiting, nausea, and have been actually gaining weight which I told my GI is anti-Crohn’s. He laughed and said it was strange. I did some blood work at the hospital he was affiliated with and was given stool samples.  My GI said not to jump to any conclusions and we had to wait until we had some data which I am all for. There could be something else going on. I know in the test work he asked for c diff to be tested.  What is interesting was when I was in the hospital (before anyone knew what I had) my dad was 110% sure it was c diff until my GI said it wasn’t.

Speaking of this afternoon on the way home from the GI I felt like I had to go every 10 minutes or so. My bum was really sore. I thought the first thing I will do when I get home is to take a warm bath. I got home and took a warm bath and felt pretty amazing after. I felt like I had cured some diseases by doing that. I noticed after the bath I didn’t have to go as much. I took the bath around 3:30 pm and didn’t feel the urgency to go until around 7 or 8. The bowel movements have been much more liquid which is an improvement. I took a bath right before bed (around midnight). It helped but wasn’t the same as the first. I probably will do at least one bath a day to relieve some of the muscles since they really have been worn on being on the toilet.  One thing that was somewhat scary was I was curious to see how inflamed my butt was and when I got out of the tub I dried off and saw a red mark on near the anus which was somewhat scary. I know it has been through a lot and hopefully soon it will stop. I had a bowel movement right before the tub (some of it looked like it had blood in it but I couldn’t really tell).

I am also going to try to watch what I eat. This afternoon I had a three egg omelet with cheddar cheese (ate the whole thing too) which was quite amazing. The meal came with fries and I had a couple. For dinner I had chicken noodle soup. My goal this week is to reduce sugars. Next week I will work on grains, bread, and starches. Although, there is no good evidence on diet I figure what the heck and should at least attempt it. I will monitor my progress and see how I do and be sure to blog about it.

These days the small things in life make me happy. Just feeling normal seems to be perfect.  I guess if I knew I would get Crohn’s at 25 on December 14, 2011 I might have lived my life differently. Never in 100,000 years would I have thought I would get a disease like this. For all my life I was perfectly healthy and never had a health issue besides asthma when I was younger. Perhaps as someone with a chronic disease I will go the rest of my life wondering what would of happen if I didn’t have Crohn’s. I have been on Humira for over 7 months and wonder if it is still working or if something else is going on. One thing is for sure though. I will keep fighting this disease until I stop breathing.