Saturday, February 14, 2015
So a few weeks ago I went to my GI and was having some issues with my bottom and I thought it was a hemorrhoid. However, after an examination it seems as if I had an anal fistula which is what I was a little worried about. I never really felt bad during the whole process however my rear did hurt some when I tried to lay down to sleep. On a Monday while I work I had to go to the bathroom and felt some type of foreign substance seems to pass in my stool which turned out to be puss from the fistula. According to my GI (puss must pass). My backside was feeling a little weird but after that I was feeling pretty good (there was some blood as well). After I saw my GI had to call him within 48 hours and let him know how I was doing. I have a follow up with him this week.
After my GI told me I had a fistula I asked what the plan was. I had been taking hot baths which probably seem to help the most out of anything. He told me to continue taking hot baths and he prescribed two antibiotics (I quickly pointed out my history of c diff and he said to take a probiotic-in order to reduce the chances of c diff). I still remember my meeting at the Mayo Clinic on the fecal transplants where they said they really didn't have anyone catch c diff who took a probiotic before they took an antibiotic. My doctor prescribed Flagyl and Levaquin (just a note Levaquin was one of the antibiotics I took right before I was diagnosed with Crohn's) . The only side effects I have noticed was feeling somewhat dizzy and a little tired. My backside feels great and I really don't even feel anything is wrong with me. Everything I have read seems to indicate the surgery may be required (I have been looking up colon and rectal surgeons online and have a few that I will ask my doctor about).
Saturday, January 31, 2015
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).
So yesterday I went to an orthopedic doctor (actually his specialty was in hand surgery) to look at a bump on my wrist. I actually have known for a while what this bump is (known as a ganglion cyst). I can still remember around 2008 going to a baseball game on a date and the girl asked me what it was (like it was some alien-form). This event made me a little self-conscious about it however I really have cared less over time. The past week or so the ganglion cyst did hurt some on and off with radiating pain but really not too bad. When I first came in the nurse said the we would have to take an x-ray (I thought this was a little odd since I knew what caused it). On a separate note when I filled out the paperwork they asked multiple times if this was work related or from worker's compensation (I am pretty sure the they way they bill this is very different from the regular people like me). So I went to get the x-ray taken and the technicians asked me my age and I told them 28 and they thought I was 20. I told them I get that all the time :-) (maybe Crohn's isn't so bad after all). Anyways, the x-ray was done very quickly and then I went back to the office and the doctor had the results right then and there. So the doctor explained to me I had three options. The first was to just wait and see, the second was to aspirate it with a needle, and the third was to cut it out. We both agreed that aspirating it with a needle would be fine. He told me if it comes back in another 5 years he could aspirate it again. He put some rubbing alcohol on it and then put some freezing chemicals on it (I really didn't feel much). Then the doctor stuck the needle in my cyst and some jelly like substance came out (if you YouTube ganglion cyst you will see some fools trying to do this themselves). The feeling was kinda neat because I could see everything coming out. The only issue is I wish he would have taken more out. After all this the doctor put a band-aid on my hand and wrapped up my hand and told me not to lift anything heavy for 10 days (I have been careful every since). This morning it looks like my cyst is a lot smaller but there may seem to be a little more left (I can wait some time for this).
In other health news I continue to have minor eye issues (my left eye today had some redness even though I haven't worn my contacts for over a week). I am not sure if it is the lack of moisture of what. The eye doctor told me I should change my contacts to daily, however I am not sure how that would fix the issue if I am still having some redness if even after I take my contacts on.
My Crohn's seems to be under control. It seems as if I have more health issue with non-related Crohn's things than Crohn's related things. I actually didn't believe I would still be taking Humira (I thought I would have to lost a response to it by now). I take every day with as a gift and am grateful that I have my health and always in the back of my mind remember those dark days when I was in the hospital with feeling pretty lousy. I still remember my GI telling me when I got out of the hospital that on a scale of 1-10 (10 being bad) that my intestines were a 10! I wonder what grade he would give my intestines these days.
Monday, January 5, 2015
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.
Saturday, November 1, 2014
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.
Saturday, October 4, 2014
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.
Sunday, September 21, 2014
So over this past week I went on vacation (actually a family vacation-we rented a house on Long Island). The trip was very relaxing and it was nice not to have to work (even though I do like working and making a difference). I remember reading this article that traveling could lead to a Crohn's flare. It was nice that I was able to rest and take a break. Resting did seem to help my symptoms (although even though I am currently in remission). To me stress can make Crohn's worse. Stress, sleep, and eating (dark rich chocolate and anything really really greasy) for me seem to be slight triggers. My weight is still pretty good. Currently I am about 167 pounds (I ate a bunch while on vacation but also did a bunch of walking so I guess it balanced out). My game plan is to start eating a tad better (more salads and fruits and less junk food). For a while I was eating pretty healthy and felt better than usual. I know the studies have shown that diet doesn't really show an effect. However for me it does make a minor difference. Well I am heading to bed now after traveling all day. It will be nice for once to finally wake up in my own bed.
Over the weekend I felt a little tired. We got back home on Friday and I was up until about 3 A.M. and I woke up around 9 A.M. Saturday morning (I was pretty tired but no stomach pain). So on Saturday night I went to bed around 11:30 P.M. and woke up around 9:30 A.M. on Sunday morning. I felt pretty good after all that sleep but I think my body might have a slight sleep deficit. Also on Saturday night I had a bowel movement that was solid however did have some minor blood in it. I think I might be slightly anemic since small amounts of blood might be in the stool which is making me tired. I probably will get a good night rest tonight as well.