Colonoscopy Time


Recently I went for a colonoscopy. This is by far the worst time of the year for me. Every year during President’s week in February I go in for a couple of hours to have my GI dr. look at my insides. This in itself is nothing for me. I am put to sleep and don’t feel a thing. It is the day and night before that really kills me. colonoscopy

Before you can get scoped, you have to be cleaned out. That means you have to take powerful laxatives that keep you in the bathroom all night. Growing up, I used to have to drink this nasty liquid from a gallon jug. Of course, I could never get the stuff down. It was by far the worst tasting stuff ever. Over the years they improved things…a little. Now there are choices. You can do this small bottle of phosphate soda which to me is also nasty. There are pills that are the size of horse tranquilizers that you can take. They are also nasty as they are very salty. The easiest form for most people and I think is probably the most popular one now is Miralax mixed with water, soda, Gatorade or any other liquid. However, I can’t get that down my throat either.
prep_meds_new
The prep is very stressful on my body and I get the worst nausea ever. I am sure a lot of it is mental but it is still there. So, my prep is very easy…as far as consuming goes. I take 3 pills of Dulcolax followed by another 3 about 4 hours later. Now I must stress…this is not a normal prep so please don’t do it unless you talk it over with your GI dr. Luckily, I don’t have many issues with my gut. I have no strictures and have had no surgeries. So, this prep method cleans me out fine enough. It does however kill my guts. It gives me the worst cramps and eventually the nausea is so bad that whatever liquid I drank that day comes back out. Once I am cleaned out, the dry heaves start. I get really bad and I feel like I am dying. I do know that it will pass and that thought alone gets me through it.

The other down side to the day before is that you can’t eat anything. You have to be on a clear liquid diet. That means Jello, broth, tea and lots of water. This year, I spent my prep day watching a lot of television. Of course what do I see every 2 seconds…but something advertising food. I watched tons of episodes of Breaking Bad and they were either eating or at a restaurant or having something to do with food. UGH!!!toilet

As you can see, I survived my ordeal. For me, this is a fairly simple procedure. However, I know for many people this isn’t easy. I feel for those people because I know I have it easy and yet it doesn’t feel simple. I have actually seen someone get a number of these scopes within a year. I can’t imagine doing this multiple times within a year. My heart really went out to this person.

My only advice I can give to anyone that has this procedure done is to keep your chin up. The day of prep is just that…a day. It is for one day only. As bad as it seems, it will be over soon. In fact, the prep is worse than the scope itself. So when you are sitting on the throne, doubled over in pain, just remember. Tomorrow, you will get some great meds and a nice deep sleep. And then you can wake up to some juice and crackers, go home and have the best tasting low fiber food around because after not eating for a day, everything taste delicious.

I Have A Dream


MLK I Have a Dream

Today, January 20th, it is Martin Luther King Jr Day in the USA.  For anyone that doesn’t know who he is, MLK was  an American pastor, activist, humanitarian, and leader in the Civil Rights Movement.  One speech he is well-known for is his “I Have A Dream” speech.    Part of his speech was, “I have a dream that one day this nation will rise up and live out the true meaning of its creed: “We hold these truths to be self-evident, that all men are created equal.”  Also, “With this faith, we will be able to hew out of the mountain of despair a stone of hope. With this faith, we will be able to transform the jangling discords of our nation into a beautiful symphony of brotherhood. With this faith, we will be able to work together, to pray together, to struggle together, to go to jail together, to stand up for freedom together, knowing that we will be free one day.

Now of course, MLK was talking about racism and how one day everyone will be judged as equal and not be looked at for the color of their skin.  This speech was given on August 28th, 1963.  Times were definitely different back then.  Looking at our times now, a lot has changed.  To start, we have a black president of the USA.  Segregation is illegal.  In most places, you aren’t judged by the color of your skin.

But, when you do look closely at the times, some things haven’t changed.  Back in 1963 the president was John F Kennedy.  As many people now know, he suffered from many illnesses, which back then were kept secret.  One of those illnesses that he is thought to have had was IBD.  Not much was known about it then and there weren’t a lot of treatment options.

Fast forward 50 years and a lot more is known about IBD.  We have many treatment options to us, both medicinally and surgical.  However none of these treatment options are cures.  Anyone with IBD has it for life.  Sadly, a lot of us won’t even be able to experience some of these treatments because once again we have inequality.

Instead of race being an issue, this time it is wealth.  Crohn’s Disease and Ulcerative Colitis can occur within anyone.  It is said that about 1.4 million Americans suffer from IBD.  The disease doesn’t care if you are white, black, asian, or hispanic.  However, where the inequality comes in, is in the treatments.  Many of the drugs are expensive.  If you don’t have the money, you can’t have the drugs.  There are some exceptions and the drug companies do help some people.   Sadly though, there are many people out there suffering every day because they aren’t being treated.  They are ignored because they don’t have health insurance.  They are out of work and don’t have the thousands of dollars needed for a month’s supply of medicine.  These people are pushed aside and told that they can’t have something because of their status in life.

MLK had a dream.  His dream was that African-Americans would be treated as equals.    For the most part, his dream has come true.  Now, I have a dream.  I have a dream where one day people will be allowed to be given medicine regardless of the amount of money they have.  I have a dream where one day people will be treated for their illnesses because they are sick and not because they can pay a bill.  I have a dream that one day IBD will be looked at as life ending diseases and a cure will be researched and found.  I look forward to when IBD will be given the respect it is deserved.  And I will end this with the final words of MLK’s speech:

And when this happens, and when we allow freedom ring, when we let it ring from every village and every hamlet, from every state and every city, we will be able to speed up that day when all of God’s children, black men and white men, Jews and Gentiles, Protestants and Catholics, will be able to join hands and sing in the words of the old Negro spiritual:

                Free at last! Free at last!

                Thank God Almighty, we are free at last”

“I No Longer Have Crohn’s, This So-Called Incurable Disease”


Now that I got your attention…no I did not cure my Crohn’s.  This is a quote from a writer/blogger that claims she cured her Crohn’s from practicing Buddhism.

As you can guess, I am about to go on a rant because this infuriates me.  I have said it before, and will say it again.  IBD is incurable.  My last post was a repost from a friend who explains how even by removing the disease portion of your intestines with UC you are not cured.  It helped open my eyes because I was one of those that used to say that if you remove UC, then you are cured.  I know I was wrong in that thinking now.  Now, we have this person that says if you just think your disease away you can cure yourself.

Before I go any further, please go read the article, which was put out by a news agency.  https://open.abc.net.au/posts/my-freedom-from-bowel-disease-75ut3na

That’s right…a news agency.  The same people who should be reporting facts are now reporting opinions. 

Now, I don’t want to dismiss the whole mind/body connection.  I do believe in it.  For years I felt I controlled my disease by my thoughts.  But I only controlled it.  I would never say I cured myself, even though I had no symptoms and was off all meds.  I was in remission.  It is possible to use your mind to help control the body.  I think her becoming a Buddhist helped her to clear and focus her mind.  Meditation is good for the body.  I won’t argue any of that.  Also, I won’t argue that stress plays a big factor in our disease and by removing it you get better.  Removing stress from the body at any time will help it heal against any disease.

“What became abundantly clear to me was that how we ‘think’ creates chemical reactions in the body. This in turn affects and can damage the cells within us. With no stress, the immune system works extremely well. By practicing acceptance, which prevents all stress, I got through breast cancer, skin cancer, and both my brothers dying of cancer. With each of these tests, the so-called incurable Crohn’s disease never returned.”

This was probably one of the few things I was able to agree with in the article.  I am happy that this author was able to tackle Cancer and still remain in remission.  I think it would take a very focused mind and it seems like she has one.  I applaud her for that. 

The one quote that worries me though was this.. “In my understanding I no longer have Crohn’s, this so-called incurable disease. Some doctors still find this hard to believe and often just say to me “So you are managing your Crohn’s disease well!” I manage nothing but my mind.”  It worries me because she isn’t managing her Crohn’s.  She is treating this like she is cured, and even the doctors don’t say she is.  I think when she gets a flare she is going to spiral downwards real quick and probably suffer from some bad depression.

I sort of hope that Kit Campbell reads this and comes to the realization that she isn’t cured.  I hope that she eventually sees what we all see, and that she needs to be treated.  But I know reality and the truth is my job as an activists just got harder because of people like her telling stories that are best kept for the campfires.

It’s Survey Time


So as some of you know I am a fan of WEGO Health and what they have to offer the medical community.  Well, starting today they are holding a survey on the online Crohn’s and Ulcerative Colitis communities.  They have asked me to share the survey to make sure that they get as many patients and caregivers involved as possible.   The survey will take about 10 minutes.  Please take the time and come here to take it..

https://www.surveymonkey.com/s/G8S8FTY.

As a thank you for the survey, WEGO Health will be making a donation to a charity of my choice.

 

Thank you for helping out.

World IBD Day 2013


HAPPY WORLD IBD DAY!!!!!!

The time has come once again for us to celebrate our disease and spread awareness.  This year I was inspired by CCFA’s poor attempt at marketing IBD.  As you know from previous posts that I was not for their Escape The Stall campaign.  I felt their campaign didn’t show just what our disease is or can do.

So, to keep this brief, I made my own video to show just what this disease is to us.  I hope you enjoy it.

 

Crohn’s Disease and Depression (Repost)


Since this is Mental Health Awareness Month I thought I would repost my thoughts on depression.  This was one of my first post I wrote when I was still using Tumblr.  I then reposted it here last year so in a sense, this is the 3rd time, but for many of you this might be the first time you see it.  I just want to add that I always say with IBD you are never alone…and that really goes with depression also.  If you are feeling depressed, please talk it out with someone.

 

It is coming up on the year mark on when I started to embrace that I have Crohn’s Disease and with it comes depression.  Depression is a big part of the disease and not something that is regularly talked about.  I never had a doctor tell me that this would be one of the side effects of Crohn’s.  It was something I have had to find out for myself and learn to deal with on my own.

Everyone diagnosed with either Crohn’s Disease or Colitis will go through some sort of depression at least once in their life time.  Anyone with the disease will probably back me up on this and can easily recall their first time experiencing it.  For most of us, it is when the doctor comes into the room and informs us of his diagnosis.  If anyone is like me, our first reaction is …”What?  What the H*LL is Crohn’s Disease (or Ulcerative Colitis)”.  After we are given the breakdown of what it is and find out it is incurable, that is when that sad feeling usually will hit.  Then we are told how we will be on meds all our lives and if it goes like when I got diagnosed, you will be told that you will have at least one surgery within our lifetime due to the disease.  That rumbling cloud that was closing in, is now over your head and pouring.  Depression will now sink in.

Now I am not saying that you will experience a curl up into a ball, never talk to anyone again, I just want to die depression.  It could just be a “Why me?” experience that last a couple of minutes.  But, it is there and truthfully, it will never really go away.

I was never one to open up to anyone with my feelings.  I have always kept them inside and dealt with things as they came.  As a kid with CD, I went to a shrink per my doctors orders and I still couldn’t open up.  I felt, no one feels the way I do, so why bitch about it.  Certainly a shrink won’t understand what I am going through..so no way will I open up to him.  I was 15 at the time and didn’t know better.

When I was in college, my first real bout of depression set in.  I went to school in Upstate New York in the Adirondack mountains.  I remember sitting in my suite, looking out the window at the snow-capped mountains in the distance.  It was such a beautiful sight and I felt so alone.  I felt like there was this gloom hanging over me.  Here I was in the prime of my life, having fun and I felt so depressed.  Eventually it would pass and I didn’t dwell on it.  I did take notice on how I felt and vowed that if it came on again I would get help.  Of course I would ignore myself.

Over the years, depression would come and go.  Last year I would experience not one but two bouts of it and it would change my life.  A day after my birthday in May 2011, my father in law, who had Colitis passed away.  He had been having problems (from what I was told) brought on from his ostomy bag.  I would learn later on after his death that it was from his internal pouch that caused his problems.  My father in law was a strong person and never let his condition get to him.  I saw him battle with IBD for years and it gave me some sort of inner strength.  We never discussed IBD which I now regret. 

His death hit me hard, but I had to be strong for my wife and mother in law.  I couldn’t let myself break down so I never really got to grieve.  For the rest of the year I would think about him and my own struggle with CD.  Then in December I got sick.  I was taking antibiotics and Metformin (for my blood sugar).  I was in bad shape from the two.  By January I was getting worse.  I would be going to the bathroom 30 times a day and in pain.  Depression again sank in.  I was at the point that I didn’t know what to do.  Med were not helping me at all.  No one knew what to do.  I was convinced my guts had finally gave up and that they were going to have to come out.  My father in law kept coming to my mind and his struggle and I fell so deep into depression.  I am 38 and have my whole life still ahead of me.  I didn’t want to end it with more problems. 

Finally, a switch clicked in my head.  It finally hit me that I have CD.  For 23 years I never really accepted it or dealt with it.  I didn’t even know what a truly had.  So I went onto the internet.  I did a lot of research.  I looked at pictures of what an ostomy bag was (first time I ever did that).  In my research, I stumbled upon some great strong women on YouTube that gave me strength.  I found a number of social websites where I found I wasn’t alone.  I finally realized just what my purpose is and what I had to do.  I was going to advocate and educate.  I wanted to help the millions of people out there with IBD.

So, here it is May 2012.  The one year anniversary of my father in laws death in upon me.  And this time, I won’t get a deep depression.  I will get strength from it.  I know he would be proud of me for what I am doing. 

I now know that depression is normal with IBD.  We all feel it.  The trick to it, is to not let it run our lives.  We must acknowledge it and get strength from it.   Sometimes, we need to seek some professional help and that is ok.  I now know that.  Sometimes, we need to take meds for the depression, and again that is ok.  It just means you are aware that you have it, and you can grow from it.

Do let depression run your life.  If you get it, acknowledge it and seek out help.  It can be professional help. It can be the help from a friend.  It can be from online…but get help.  It is normal to feel it.  Just remember you are not alone.

The Health Activist’s Writers Month Challenge – Day 25 Learning


Share something you learned from another Health Activist (that everyone should know).

First I think you need to read this post from Amanda http://stopthinkingstartwriting.blogspot.com/2013/04/we-know-our-bodies-best.html

I am using this post as a good example.  I have known Amanda from online only.  We were introduced through another activist.  When we were introduced, Amanda had been sick for some time and couldn’t seem to find a diagnosis.  She presented with symptoms of IBD but no GI could seem to find anything.

Throughout time, she would have her good days and her bad days.  But through it all Amanda would not give in.  Even when doctors would tell her nothing is wrong she would fight and look for another doctor.  Eventually some diagnoses would come it but they wouldn’t be the big one she was needing.

Now, she finally has the diagnoses she was waiting for and reason everyone should know this.  She has Mast Cell Hyperplasia (consistent with Mastocytic Enterocolitis).  Now most of you, and I was one of them, probably have never heard of these terms..but Mastocytic Enterocolitis is a form of IBD.

Many people think IBD is only Crohn’s Disease and Ulcerative Colitis.  Those are the 2 main diseases but there are others.  ME is one of those others.  I have often only talked about the former two.  Now I have another disease to learn about and possibly talk about.

I look forward to learning another form of IBD and I look forward to our newest IBD Warrior and her challenges to now beat this disease and heal up.

——————————————————————————————————————————————————–

 

This is being added after this post was already posted.

I have done some research…and was shocked to read what I did.  Turns out Mastocytic Enterocolitis (ME) isn’t IBD.  It is similar to IBS.  ME isn’t chronic and is very treatable.  Here is one link that is reputable:

http://rarediseases.info.nih.gov/gard/10176/mastocytic-enterocolitis/case/24223/case-questions

Amanda, I don’t know if maybe you were led astray by a doctor.  Just know that I and many others still care and hope you do get better.  From the looks of it, you will and real fast.  The treatment is a simple one and I wish all disease were easily treated like ME.

I am sorry if I offended anyone that took offense for me saying it was IBD.  I didn’t do the research ahead of time and just got excited that Amanda had a diagnoses.

The Health Activist’s Writers Month Challenge – Day 9 Caregiving


Patients, what advice or tips do you have for caregivers out there – professional or otherwise!

This is a good topic.  It is so good that it is a repeat of one I did last year.  So, I will pretty much repeat what I said in that post.  Also, keep in mind that I am focusing on caregiving to someone with IBD.

First, and this is one of the most important things a caregiver needs to remember, is that the person they are taking care of has the disease, not the caregiver.  The patient is most likely scared because they have an incurable illness.  What they need most of all is love, affection and some sympathy.  They are probably in constant pain and they might not ever feel “normal” again.  It is your job to help them get back to normal as best as THEY can.

Second, listen to your patient.  Don’t ever assume you know what they are going through or what they are feeling.  If they say they have pain, believe them.  Sometimes they may seem alright, but mos of the time there is pain within their gut.  Think about how you feel when you have a sunburn.  Well, Crohn’s is like a sunburn on the inside of the intestines and it is constantly being touched.

Next, don’t try to force feed them.  An appetite is a tricky thing for someone with IBD.  One day they can be nauseous and not want to eat.  Other days, they will want to pig out.  Some of this is caused by the disease, some of it caused by the meds.  Also, they are going to find that there are a bunch of foods that don’t agree with them.  If they want to try a specific diet, let them.  If they say they can’t eat a certain food….believe them.  Don’t try to make them eat something because it is healthy.  Not everything healthy is good for someone with IBD.

Your patient is not going to like the medications that they are on.  If they are taking Prednisone, there is a good chance that they will get some depression.  You should know right now, they will gain weight.  Their face will swell up and this is called a “Moon Face”.  Just let them know that it is normal, they are still beautiful and handsome, and that it is temporary.  One day they will come off the steroid and their weight will come down.  Now, sometimes if they are in a flare, they might lose weight.  Try to give them some supplemental foods like Ensure to help maintain their weight.  Don’t ever mention how skinny  they look.  They know they are losing weight and don’t want to be reminded of it.

My last advice I can give is never ever ever say they are sick.  They have a chronic illness that will be with them their whole life.  They know how they feel and they want to try to look and act normal.  To them, it is something that is now part of their life.  To them, being sick is like catching a cold or a flu.  Having IBD doesn’t mean your life ends…so why should they think they are sick.  Treat them as you would treat anyone else.  Play with them.  Talk with them.  Give them hugs and kisses.  Let them know that their life will move along and that they have nothing to be ashamed of.

And if ever you have a question, don’t be afraid to ask.  Ask a doctor.  Ask the person you are giving care to.  You can ask me.  There is also a huge community or people with their condition online.  Turn on your computer and look for them.  They will accept you and your patient into their family with no questions asked.

You are now about to embark on a great journey.  Enjoy the ride.

The Health Activist’s Writers Month Challenge – Day 7 Sensationalize!


 Share a ludicrous headline or cure. Do a news search and choose a ridiculous headline or proposed cure about your condition and write what you think about it. Can’t find one? Write your own.

 

Bone-marrow transplant cures girl’s inflammatory bowel disease – http://www.theglobeandmail.com/life/health-and-fitness/health/bone-marrow-transplant-cures-girls-inflammatory-bowel-disease/article6177105/

 

This article I found online from The Globe and Mail which is a site based in Toronto Canada.  To quickly sum up the article, a 4-year-old girl was suffering from numerous health issues, with IBD symptoms being one of the problem.  Doctors say she had some form of IBD, but didn’t respond to any treatment.  After doing some test they found that she had a rare mutation of her interleukin 10 receptor which is the body’s off switch for inflammation.  The way to cure this problem was to do a bone marrow transplant.  When they did this, they found that she was cured of her IBD problem.

 

Now, I don’t say this isn’t a true story.  I am sure this little girl is real, was suffering, and is now a lot healthier.  I am happy for that.  But there are things about this article that I have to hold at length.  First, the doctors say she had some sort of IBD but it seems like they don’t know what she had.  My question is why not.  I know we often get misdiagnosed, but the problem is usually a UC diagnosis that changes to CD.  This girl didn’t even get that.  So, I question did she really have a IBD problem or was it more of a body inflammation problem.

My second concern is that only 20 patients have had this procedure done.  For me, that is to little of a group to start saying that this is a cure.  For all we know, this little girl could just be in remission.  But again, if the doctors don’t know what she has, how can they say she is cured.

Now I know there are more sensational articles and blogs out there.  I chose this one because even though I question some of it…I think that there may be some truth to this and possible a real cure there.  I guess I want to believe that there is real hope for a cure for IBD.  Bone marrow transplants have become pretty common and I can only hope that one day we get it as a treatment and cure for IBD.  The future right now looks a little brighter.

Crohn’s Disease Warrior Patrol: A Charity Is Born


This is a repost from http://www.healthline.com/health-news/crohns-warrior-patrol-charity-sponsors-hospital-visits-031313  The article was written by Jaime Weinstein, a fellow online health activist

 

Crohn's Charity

No matter where you turn these days you see commercials and print ads featuring #Hashtags, links to Facebook and Twitter pages, and QR codes for corporate contests. However, social media isn’t just for advertisers; it’s for patients too.

Social networks are a means for patients living with IBD who are located across the globe to reach out to and communicate with one another. It was also the catalyst for Michael A. Weiss to create the Crohn’s Disease Warrior Patrol (CDWP).

A Beautiful Idea

In the late fall of 2012, Weiss, a lawyer, author, and long-time Crohn’s disease survivor, blogged about the need for patient support from others who understand things that only other IBD patients can. A few weeks later, Weiss was contacted via social media about meeting with a young patient named Damon, his mothers, and his older brother.

Ivy Lindsay of Comfort Ostomy Covers by Ivy was originally contacted by one of Damon’s moms to create personalized ostomy covers for Damon, who was having a hard time coping with not one but two stomas (ports in the abdomen that are used to remove waste from the body). One of Weiss’ blog readers and Facebook friends who also happens to be an IBD advocate, Jeffrey LeVine, told Lindsay to speak with Weiss about her young client.

They talked at length about the young patient and his needs, but something was still missing: another IBD patient with an ostomy whom Damon could relate to. In came Marisa Troy. LeVine introduced Troy into the fold, and few phone calls later, arrangements were made for the trio to embark on their mission to meet Damon and raise his spirits.

“Marisa was amazing with Damon and I was impressed with her ability to make him feel at ease while she was also being so candid about her own experiences,” Weiss said of Troy. You can read more about the CDWP’s inaugural visit with Damon here.

This was the kind of interaction Weiss envisioned when he blogged, “Patients helping patients is the best medicine.”

The Birth of a Non-Profit

After meeting with Damon, Weiss embarked on a quest to expand the CDWP. He wanted to create an organization to connect Crohn’s “warriors” and advocates with hospitalized IDB patients to offer them comfort and a friendly, in-person visit.

Several of Weiss’ social media contacts referred him to Alex Fair, CEO of Medstartr.com, a website that utilizes crowd funding for healthcare start-ups. With the help of Fair, a few lawyer friends, Wall Street financiers, and Foundation executives, Weiss crafted a multi-phase business plan for the CDWP and will file for Tax Exempt Status from the IRS as a Charitable Foundation under section 501(c) 3 within the next few weeks.

The CDWP: Not Just for Crohn’s Patients

The CDWP is not just for Crohn’s patients, it’s for all IBD “warriors.” And through the Medstartr initiative, Weiss is hopeful that CDWP will be embraced by IBD medical practices, psychological practitioners, hospitals, and pharmaceutical companies.

If you would like to become an IBD “warrior” helping other patients in your area, you can sign up at: http://crohnsdiseasewarriorpatrol.org/.

 

I was happy to be involved in this meeting with Damon.  I felt like my part wasn’t that big and I was just doing what needed to be done.  My original post about this can be found here http://aguywithcrohns.com/2012/12/31/goodbye-2012-hello-2013/.