Crohn's

Monday, February 8, 2010

Being diagnosed with Crohns

For few years during my early twenties I began experiencing unusual symptoms. Even though I knew this wasn't normal, I kept putting off what I should have done right away - see a specialist. It took a lot of joint, stomach and physiological pain to make the move. Once I found out what I had, even though there wasn't a cure for it, I was the happiest person alive. At least I knew what I had and it was treatable and first time in years I had hope.

I remember sitting in the waiting room having my blood work done before knowing my diagnosis. I kept asking God for it not be anything serious. At this point I wasn't sure wheather my body was fighting cancer or what it was. Once we've determined that my symptoms were in a large part related to my digestive system, I was sent to see a gastroenterologist. I had no idea what to expect but I knew that I would probably need to have a colenoscopy. I was right, colenoscopy isn't so bad if it wasn't for the preparation part where you need to drink about a gallon of this nasty fluid which makes you go to the bathroom about 100 times that same night. That stuff really cleans you out. You end up not sleeping the night before your procedure due to the constant bathroom trips. When I woke up in he morning, my body was dehydrated and very weak.

The procedure was painless as I was put under anesthesia and I couldn't remember a thing about the procedure or any discomfort associated with it. I remember waking up disoriented not knowing that it was all over. Later on I was told that I had Crohn's. Doctor prescribed me asacol and entocort and told me to see him in a year.

Asacol and Entocort didn't work at all, I continued experiencing bloody stools, painful fistulas and joint pain. I even went to see an acupuncturist. I don't remember how much money I've spent on him but it must have been thousands. He charged 50 for each session and 25 each visit for natural Chinese medications. I kept seeing him three times a week for few months. Once I've given up on him, I decided to do more research and look for a doctor who specialized in Ulcerative colitis and Crohn's disease. This brought me to Dr. Greenberg who to this day is my doctor. He took another look at me by scheduling another colenoscopy. That time I found a lot more about my disease than I did from anyone else before. Later on he introduced me to prednisone and HUMIRA (adalimumab)injections.

Right after starting prednisone, during the first month I've regained 20lbs of the 50 that I've lost. This helped me regain confidence and boosted my self esteem. I knew that this was a short term drug and needed to be discontinued do to bad side effects so my doctor gave me another option. He told me all about this new drug called Humira. Feeling skeptical at first I gave it a shot (literally). After about a month of injections I started feeling better first time in a long time.

After three years of being on it, I've regained all my weight back, weighing a healthy 180lbs and overall I feel very good. I work out, ride my bike a lot and enjoy life. I even got married last year and plan on having kids soon.

My goal is to educate people diagnosed with this condition and let them know about other options out there for them. Having Crohn's for about 10 years made me realize how important life is and I think it even kept me grounded and keeps me from doing things I would be doing otherwise. I've learned what works best for my body from what I should eat to my lifestyle changes. Life with Crohn's doesn't have to be a death sentence. I'm here to help.

JUNE 12th 2010
Its been a while since my last post. Still have Crohn's disease ;-) can't get rid of it that easy I guess although at times I feel like its not there. I have to admit that Humira does wonders if you have Crohn's. Being in remission for this long is unheard of. Sometimes you think of possible side effects but its well worth it if you're symptom free.
Couple of months ago I overheard someone talk about another person with Crohn's disease and what he's going through. It reminded me of everything I've been through few years ago, right away I felt obligated to do something about it. I talked to his parents and explained everything there was to know about Humira and gave them my booklets that come with the injections. Before I knew it I heard back from them that he's symptom free and never felt better. What a feeling, let me tell you. Too bad these shots are so damn expensive. Without insurance I believe they're like 6 or 7 hundred bucks a shot which is insane if you ask me.

NOVEMBER 2nd, 2010
Its almost winter and weather's getting colder by the day.  This is truly the worst time for Crohn's when you're on any immunosuppressants and surrounded by people on daily basis.  Its one thing to isolate yourself from populated areas but one has to work, go to church, attend social gatherings ect.  Normally I don't get sick (cold, flu, respiratory infections) but during this time I do and more frequently than others.  Although your immune system isn't supressed that much, its enough to catch an occasional flu.
Hygiene needs to be your highest concern, washing hands and using hand sanitizers goes without saying.  Once I do get sick, it brings along all kinds of Crohn's symptoms that I normally don't have.  This is why winters are hardest because of an increased chance of getting sick since everyone one else around your is sick.

On a more positive note, even those minor inflamations when I have a cold or a flu don't compare to ones that  I used to get before on Humira.  One thing that I've also noticed is that the more stressed out/anxious or depressed I get the higher chance of Crohn's symptoms.  I've been trying to control my mood and emotions since they play a big role in controlling my disease.

For few years during my early twenties I began experiencing unusual symptoms. Even though I knew this wasn't normal, I kept putting off what I should have done right away - see a specialist. It took a lot of joint, stomach and physiological pain to make the move. Once I found out what I had, even though there wasn't a cure for it, I was the happiest person alive. At least I knew what I had and it was treatable and first time in years I had hope.

I remember sitting in the waiting room having my blood work done before knowing my diagnosis. I kept asking God for it not be anything serious. At this point I wasn't sure wheather my body was fighting cancer or what it was. Once we've determined that my symptoms were in a large part related to my digestive system, I was sent to see a gastroenterologist. I had no idea what to expect but I knew that I would probably need to have a colenoscopy. I was right, colenoscopy isn't so bad if it wasn't for the preparation part where you need to drink about a gallon of this nasty fluid which makes you go to the bathroom about 100 times that same night. That stuff really cleans you out. You end up not sleeping the night before your procedure due to the constant bathroom trips. When I woke up in he morning, my body was dehydrated and very weak.

The procedure was painless as I was put under anesthesia and I couldn't remember a thing about the procedure or any discomfort associated with it. I remember waking up disoriented not knowing that it was all over. Later on I was told that I had Crohn's. Doctor prescribed me asacol and entocort and told me to see him in a year.

Asacol and Entocort didn't work at all, I continued experiencing bloody stools, painful fistulas and joint pain. I even went to see an acupuncturist. I don't remember how much money I've spent on him but it must have been thousands. He charged 50 for each session and 25 each visit for natural Chinese medications. I kept seeing him three times a week for few months. Once I've given up on him, I decided to do more research and look for a doctor who specialized in Ulcerative colitis and Crohn's disease. This brought me to Dr. Greenberg who to this day is my doctor. He took another look at me by scheduling another colenoscopy. That time I found a lot more about my disease than I did from anyone else before. Later on he introduced me to prednisone and HUMIRA (adalimumab)injections.

Right after starting prednisone, during the first month I've regained 20lbs of the 50 that I've lost. This helped me regain confidence and boosted my self esteem. I knew that this was a short term drug and needed to be discontinued do to bad side effects so my doctor gave me another option. He told me all about this new drug called Humira. Feeling skeptical at first I gave it a shot (literally). After about a month of injections I started feeling better first time in a long time.

After three years of being on it, I've regained all my weight back, weighing a healthy 180lbs and overall I feel very good. I work out, ride my bike a lot and enjoy life. I even got married last year and plan on having kids soon.

My goal is to educate people diagnosed with this condition and let them know about other options out there for them. Having Crohn's for about 10 years made me realize how important life is and I think it even kept me grounded and keeps me from doing things I would be doing otherwise. I've learned what works best for my body from what I should eat to my lifestyle changes. Life with Crohn's doesn't have to be a death sentence. I'm here to help.

JUNE 12th 2010
Its been a while since my last post. Still have Crohn's disease ;-) can't get rid of it that easy I guess although at times I feel like its not there. I have to admit that Humira does wonders if you have Crohn's. Being in remission for this long is unheard of. Sometimes you think of possible side effects but its well worth it if you're symptom free.
Couple of months ago I overheard someone talk about another person with Crohn's disease and what he's going through. It reminded me of everything I've been through few years ago, right away I felt obligated to do something about it. I talked to his parents and explained everything there was to know about Humira and gave them my booklets that come with the injections. Before I knew it I heard back from them that he's symptom free and never felt better. What a feeling, let me tell you. Too bad these shots are so damn expensive. Without insurance I believe they're like 6 or 7 hundred bucks a shot which is insane if you ask me.

MAY 23RD, 2011

Since my last post I've been doing alright.  I can't say that my condition had improved since there wasn't anything to improve really.  Currently the only concern I have about my health is elevated blood pressure.  I partially blame it on genetics since my dad has hereditary high blood pressure, in my case there is another factor that is responsible in part for the hbp.  I've gained about 40lbs since starting on humira and gained all that weight in about a year.  Even though I now weight about 185 at 5'10" and feel very comfortable with the way I look, gaining this much weight over a short period of time has some side effects and high blood pressure is one of them.  I need to try working out more, but if that doesn't help I am going on high blood pressure medication.  I'm glad that summer is here and I plan on being a lot more active in the next months.  

5 comments:

  1. Hi I like your blog. My gastro has applied for Humira with our Health Dept. As I live in New Zealand the health system is not up to the standard of first world countries. If aproved I should start prior to xmas. Im hoping for the same results as you. At the momment im on Pentasa sup x 1/day. Methatrexate 25mg/week.
    but that is just holding me stable.

    Regards Glenn Newman
    glenn.n@xtra.co.nz

    ReplyDelete
  2. Hi Glenn, I'm glad that you're doing alright. Once you start your humira treatment, it will be like night and day. At times you will forget that you've ever had this disease. I promise.

    ReplyDelete
  3. Hey Cronict, I'm studying in a Medical Anthropology class and comparing diagnosis from an MD side to the Illness Narrative side...I'd love to hear how your summer went and how you are doing now. I've always been intrigued about Crohn's seeing as everybody seems to handle it differently - dated a guy for almost 3 years with it as well. Hope all is well!

    ReplyDelete
  4. I must say that all is well and I've been in remission for years now since Humira. I absorb nutritions well and gained another 10-15 lb, up to 200. I would say that is little high for 5 10
    I've talked to others on Humira and generally the drug is very helpful with no side effects. I get tested few times a year for changes in blood, heart, lungs, things like that which is kind of pricey even with insurance and high deductible but oh well at least I fee great. Just had my first baby girl born on 11/16/11 which made things even better. Stay positive and avoid stress.

    ReplyDelete
  5. Hi, i have read your blog and wanted to ask what your symptoms were before you were diagnosed. I have had really bad abdominal cramps on and off for over a year now and just a few months ago they were really bad and there was blood in my stool. I have seen a GI specialist and they did a colonoscopy but it was clean. I have looked up all the symptoms and how they diagnose but wanted to ask someone who has the disease what the experienced prior to diagnosis. Thanks.

    ReplyDelete