What Is Wrong With Me??

Oct2

Have you ever asked yourself this question? You can be sitting there, just trying to think of a word that has slipped your mind and you think what is wrong with me. Or you can be seriously ill, can’t get diagnosed by a competent doctor and again, you ask the question.

These past couple of months have been very busy. I am sorry I haven’t kept up with this blog. When I last left off, I was in the process of changing GI doctors. Since then, I have seen the new GI, been in a bad flare, and have had knee pains from arthritis every day. My body feels like it is falling apart and I have started to ask, what is wrong with me? I used to be able to do so much.

So much is happening in my life and I don’t even know where to start. For my Crohn’s, around February or March (can’t remember when) I went off the gluten free diet. Since then I have slowly felt sick again, entering into a flare. When I saw the new GI, he wanted to try some other meds, including Prednisone. I kind of talked him out of it as I don’t react well to it. He allowed me to just take Immodium. Hopes were that this would slow the diarrhea, help hydrate me, and ultimately help me heal. After a week of that, I failed at it. It’s been about a month and I am doing better, but still flaring. I see him again in November and I worry what the results of the meeting will be. I am thinking of going off LDN and trying a new biologic. What is really comes down to is that I think ultimately I will have to keep a gluten free lifestyle for the rest of my life…and that doesn’t make me happy.

One good thing that has happened lately, is that I participated in a research study from 23 and Me (https://www.23andme.com/ibd/). From this research I found out so much about my DNA. First, I found a second cousin which has led me to find out so much about a part of my family I didn’t know existed. So Cool!! Also, from this, I was able to have my DNA analyzed (www.promethese.com). I found out from there that I am more prone to get Crohn’s Disease (really??) and that I have a higher chance of being a celiac. Gluten Free is really sounding like it is the way to go.

The third major part of my life is my knee. I have developed arthritis in my knee. Physical therapy didn’t help one bit. Every day I am in pain. I hate it and now I have to decide what is the best course of action. Do I get injections for years which only helps temporarily? Or do I insist on a knee replacement, which means surgery. It means hospital stays, rehab, and missing work for who knows how long.

When did I get old? When did my body start to betray me? What is wrong with me? I wish I had answers to my health. I know many of you with IBD wish you had answers for your issues. So now I want to know…how do you feel? What is wrong with you and what are you doing to fix the situation? Do you have any suggestions for me?

Goodbye To My Old Life

Jul8

This happens to many people every year. Many of them deal with it and move on. For us with incurable diseases, it is a major issue. I now have to deal with it and I am scared. I am talking about changing doctors.

For years I didn’t have a General Practitioner (GP) and I was fine with that. I have been jumping around from doctor to doctor and that really hasn’t bothered me. I always had my GI I could talk to and help me work out any problems. With my insurance, I can see any specialist without a referral so I felt like I didn’t need a GP. My GI doctor is a whole other story. I have been seeing this one for about 6-7 years now and have built up a great relationship with him. If you read my blog you know some of the issues I have had and how caring my GI has been to them.

Yesterday I came home and saw a letter from Mt Sinai. I thought it was junk mail and wasn’t going to open it. Something made me though and I am glad I did. It was a letter saying my GI was leaving. I felt so scared all of a sudden. I don’t worry so much about finding a new one because there are a couple of GI’s with Mt Sinai I know of that are really good. What scares me is that I have to start over. I have to share my entire history. I have to work with a new thought pattern from the doctor. Worst of all, I have to hope the new GI will approve the LDN I am taking. That is what scares me the most.

I know in the long run, things will be fine. I know I really shouldn’t worry as much as I am, but I can’t help it. Going into something new like this always worries me. It is just who I am. Luckily, I have had some good support online from some great people. They are helping to reduce my stress.

What I would like to know, is how many of you have had to deal with this and how did it turn out? Did everything go smoothly? What are your thoughts on changing GI’s when you have a great one?

I do have to say, I will miss my GI a lot. Luckily he is actually moving closer to me. I just can’t get there and get to work in the same day. He won’t have weekend hours so I don’t think I will be able to see him anymore, hence I have to look for a new GI.

Lyfebulb Social Club

Jun22

This past week I was lucky to have been invited to Lyfebulb’s Social Club. It was a cocktail party in Rockefeller Center and brought together guests to connect and learn about emerging and personalized therapies in IBD.

For anyone that doesn’t know what Lyfebulb is, they are an organization dedicated to helping people achieve their optimal lifestyle by addressing general and chronic health concerns. The founder of the company, Dr. Karin Hehenberger was there and started this company to help connect people with chronic illnesses. Their main focus had been on diabetes, but now they are moving on to include people with IBD.

The night featured Dr. Neville Bamji, board-certified gastroenterologist and Clinical Instructor of Medicine at The Mount Sinai Hospital, who shared insights to what could be coming in new therapies to help manage the diseases. Michael Fenterstock spoke to the crowd as the patient representative for the night, discussing his personal account of living with IBD, including the struggles and the successes.

The event is a part of Lyfebulb’s Social Club series, a monthly cocktail parties focused on various chronic diseases. The offline extension to Lyfebulb’s online platform, the Social Club brings together thought leaders, patients, experts and renowned professional, in an informative and relaxed environment.

Lyfebulb is fairly new to the scene and this was their third get together. They have many more things planned for the future including a radio station where people can call up to talk about their disease.

Many of you might be thinking that this sounds fun and exciting and how do you sign up for this. For starters, you can check out their website here. Right now they are based in NYC and I believe only holding events there. For me, I got lucky to have found this group…or I should say they found me. I had gotten an email from someone from a PR firm that works with them inviting me to this party. When I asked how she found me I was told that she found my blog online. I was so happy to know that my blog was very easy to find.

I think Lyfebulb has some great ideas. I met Dr. Hehenberger at the party and she really is an amazing woman. She has so many great ideas on how to bring together the chronic disease community. I know many of us in the IBD community tend to just talk with others in it, but as you know, we usually suffer from more than just one disease. A company like this will bring many of the communities together as one so there is so much more opportunities to share your stories and hear others. As well, we will all be able to find out new treatments that we might not know exists which benefit everyone.

I really want to thank Lyfebulb to letting me join their community and I look forward to going to more events with them. Hopefully, down the road, I will have more information on treatments and different ways to help everyone.

Follow up to “Crohn’s Disease in Teens Jumps 300% in 10 Years Fulled by Junk Food”

Jun20

All our complaints over Dr Mitton’s comments made a difference. Below is a statement she put out today.

20th June 2014

First and foremost I would like to apologise for the distress that I have caused by what was shown on the BBC to all Crohn’s disease and ulcerative colitis patients. I was unable to respond more quickly to the reactions to this report due to very heavy clinical commitments. I feel that what I said and the subsequent coverage has been misinterpreted and I would like to clarify this now.

I said that Crohn’s disease occurs in those who are genetically susceptible and that the unexplained recent increase in numbers diagnosed amongst young people in the UK is likely to be related to life style. I did mention pre diagnosis diet and multiple courses of antibiotics as possible factors preceding the development of overt disease in some cases. I did not say that junk food or frequent courses of antibiotics CAUSE Crohn’s disease. I am very aware there are many patients with IBD who eat a very healthy and nutritious diet and have always done so before their diagnosis.

However, since the initial report on 18th of June there have been subsequent newspaper and television reports that focus on the assumption that Crohn’s Disease seems to be “caused” by junk food and multiple antibiotics. This is not my belief and is a distortion.

I did not mean to imply any element of self-infliction and I am appalled to think this could set back public perception of IBD or that sufferers might be blamed for their own pain and misfortune.

I would like to sincerely apologise again for the distress that my comments have caused.

Dr Sally Mitton
Consultant Paediatric Gastroenterologist

Crohn’s Disease in Teens Jumps 300% in 10 Years Fulled by Junk Food

Jun18

Now that I have your attention…the above headline came out today all over the internet. It was from The Telegraph, a British paper. The article can be found here – http://www.telegraph.co.uk/science/science-news/10908884/Crohns-disease-in-teens-jumps-300-per-cent-in-10-years-fuelled-by-junk-food.html.

What I wish, is that people would really think before they speak…or type. First, the claim is that antibiotics used early in life is causing the IBD. Coupled with that is the intake of “junk food”. My favorite quote comes from a Dr. Sally Mitton. She says, “Definitely, if you have a lot of junk food before your diagnosis it actually makes it more likely that you will develop Crohn’s Disease”. Really? REALLY? This is by far one of the worst statements I have heard yet on Crohn’s. If I eat bad right before a diagnosis then that was the cause. So by her reasoning, if you are petting a dog and suddenly have a heart attack, then the petting of the dog caused the heart attack.

I really don’t know how someone is allowed to put this in writing without any sort of empirical data to back it up. So let’s look at my life. Before diagnosis I hadn’t really had any antibiotics so that isn’t what killed my gut. As far as junk food, I did eat junk food but I also ate healthy food. And what about all the people who had IBD before mass-produced sugar products? What is the reason they got IBD.

Oh wait, it’s coming back to me know. IBD is genetic and hereditary. It is something that gets passed down and is in our DNA. I guess that well-educated doctor didn’t read those articles.

Dr Sally Mitton goes on to say that people can manage their disease by altering their diet. Um…again not true. Yes, food can play a role for many people. But what about people who can’t touch food at all and have to go on TPN? As we know, there is no one diet for IBD. Everyone is different.

I swear, every time I think we are making progress with these diseases, something comes out to push us back. How many people are going to read this article and believe it. Now we are going to have to hear people say.. “Stop eating junk food and you will cure yourself”. Ugh. Ignorance. I can’t stand it.

As far as the antibiotics go, does she realize that antibiotics are also a treatment for CD? Hmmm. It can cause it and then cure it. Amazing.

Honestly I don’t know what is worse. A doctor that believes all this, a reporter that will write the article or a paper that will print it.

The Inspirational Blogger Award

May12

The Inspirational Blogger Award!

Here are the rules:

Thank and link the amazing person who nominated you
List the rules and display the award
Share seven facts about yourself
Nominate fifteen other amazing blogs and remember to comment on their blogs to let them know you’ve nominated them. (provide a link to your post)
This rule is optional you can proudly display the award logo anywhere on your blog e.g. on your sidebar and also follow the blogger that nominated you.

So first, a very big thank you to Meranda Roben O’Hara whose blog can be found here. It is nice to be recognized by the community. It even nicer to know that my blog is helping someone. Meranda, I love your blog and find you just as inspirational. Keep up the great work you are doing.

Seven Facts About Me:

I was afraid of dogs before I got my little Sable. She was only 4 lbs when we got her. She was very scared of us and wouldn’t interact much in the beginning. When she finally warmed up to us, she got in play stance and barked at me. I got scared cause I thought she was angry and wanted to attack me. 4 1/2 years later, she is my little baby and I have no fears of her. She has taught me many things about enjoying life.
I had Crohn’s Disease for about 25 years before I really understood what I had and opened up to others. I went through life pretty ignorant of what I had and just dealt with it. It wasn’t until I went into my worst flare that I decided to go online and do research.
I am very big into Star Trek. I wouldn’t call myself a Trekkie or Trekker, but I know quite a bit about the franchise. I have seen every TV episode and movie, more than once.
I am gluten free. 2 years ago, I went gluten free to help with a flare and have never looked back. It is now part of my life and has become another lifestyle that I preach. You can check out recipes I am posting on my other blog, The Gluten Free Gluttonous Chef.
I have been very lucky to meet some famous IBDers. Sadly, they aren’t celebrities like Mike McCreedy, but are still big within our community. I have gotten to meet Megan of TGBM, Sara from Inflammed and Untammed, Brian from Intense Intestines Foundation , and Frank Garufi Jr of The Crohn’s Colitis Effect, just to name a few.
I am a trained chef. I originally went to school to cook professionally and I have the degree to back it all up. However, I couldn’t take the heat (literally) so I left the kitchen. I do cook at home though and have tons of fun doing it.
I have worked in almost every aspect of the hospitality industry. I have worked in airports, hospitals, nursing homes, restaurants, quick service coffee shops, and hotels. I have been both front of the house (dealing with customers direct) and back of the house (behind the scenes).

My Nominations

My first nominations (and I think she doesn’t like these kind of awards) is Marisa from http://keepingthingsinsideisbadformyhealth.wordpress.com/. Marisa, you are so inspiring to so many people. Even though your advocacy is still young, you have gotten many people to not only listen to your story but open up about their own. I know you still struggle, but that is all part of what makes you inspirational. You speak from the heart and show us not only the good but the bad.
Next is Jacquie from http://gutwrenchingtruthaboutcrohns.wordpress.com/. Her blog is about her adventures with IBD. She talks about the side effects which at some point we all experience but sometimes don’t want to talk about.
Third is Amanda from http://warriorchick32.wordpress.com/. I have gotten to know Amanda a little from our chats on Twitter. Recently she was on a reality show on TLC called America’s Worst Tattoos. Not only does she talk about her life with IBD, but also post’s recipes which always look so delicious.
Fourth is Michelle from http://digestingmythoughts.com/. Michelle talks about what it is like for a young adult to go through this horrible disease of IBD.
Can’t forget my IBD brothers. Fifth is Josh from http://jrobinjrob.wordpress.com/. Reading an IBD blog from a guys point of view is rare. It is always nice to hear it. Josh is always trying to help educate others and I love that.
Next, and I can’t forget her, is Sharon from http://www.ibdjourneys.com. Sharon has been dealing with the negative parts of IBD for way to long. Her site is a place where everyone can come together to talk about their IBD journey.
Another wonderful person is Stacey from http://staceydearest.wordpress.com/. She is another young adult and is from the heart of America. She talks about her life with IBD.
Shari from http://ihaveulcerativecolitis.wordpress.com/ is yet another inspirational person. Her blog is about her life with UC and her stoma Fred.
Another IBD brother I like is Rasheed from http://rasheedclarke.com/ Not only does he show how UC doesn’t have to stop you from doing things but he has also written a book of short stories.
Of course, no list would be complete without mentioning Ryan of http://www.crohnsguy.com/. This guy swam Lake Erie to raise awareness for IBD. Lake Erie….one of the Great Lakes. Just shows you that IBD won’t stop some people.
Next, Mary Claire from http://www.resiliencyspace.com/. Not only has she come along way in dealing with her disease, but she shows just how strong you can be with it (literally).

The last set of nominations were listed in my seven facts about me.

The “R” Word

Apr16

According to Ali G it is Respek. According to another IBD blogger, Mary Claire, it would be Resiliency. For me it is bigger then both of those words put together. This week, I heard the “R” word officially for the first time since getting Crohn’s Disease…Remission. My colonoscopy was back in February and I knew I was healed more than the previous year. Sadly the pictures didn’t save so I couldn’t actually see the results. This week was my first appointment with my GI since then. After a little chit-chat and a quick exam, he went on his computer, pulled up the scope results, and mentioned how there was no Crohn’s activity and that I was in remission.

Needless to say I was a little shocked. I knew I was doing well. I don’t show many symptoms these days. I didn’t know I was completely in remission though. I was so happy. But like all things, the moment has now passed. Of course, I am still happy, but just because the Crohn’s is in remission, doesn’t mean I still don’t get symptoms. Because this is such a nasty disease, even if my intestines are healed, I can still show signs of the damn disease.

The first sign is my joint pains. Both my knees and my knuckles get bad arthritic pain at times. Then there are the mouth sores that come on at any given time. Next are the skin problems like rashes and pimples. The list can go on and on.

But what does remission mean..to me. Well, it actually means a lot to me. For the first time in a long time, my medicine is working. After years of throwing poisonous medicine into my body without any results, I switched over to a non-conventional drug. 2 years after starting the med, I am in remission. I would say it is working perfectly and scientist really need to start studying the role Naltrexone can play in IBD. Another great thing in all this is that my doctor is also convinced that LDN works and might start giving it to other patients. I was his first and his guinea pig. I would say the test has been successful.

Another thing this means to me is that diet does in fact play a role in IBD. For years I ate what I wanted and never healed up. Along with the change in meds, I also went gluten-free. It has been a bumpy road in my gluten-free journey and I really have to fight some cravings every now and then. But ultimately it really has helped in my healing process.

Now, please just know, I am not saying that if everyone took LDN and went GF that they would achieve remission. Everyone is different. What works for one person not might work for someone else. My results may not be typical. I don’t know since there are no studies showing a correlation. So please, don’t stop your current therapies to try mine just because I got results. Whatever you are doing might give you the results you need. If you are not there yet, be patient.

So for now I will sit back and enjoy what this word means to me because I know like so many others know…that this feeling can go away at any minute.

IBD Support

Mar19

In a previous post I had said I was working on some projects and I would let you know what they were when I could. The first was the IBD prom which sadly, had to be rescheduled to 2015.

The second project I am happy to announce now is a support/meetup group. I have been working with The Intense Intestines Foundation to organize a support group for the Northern New Jersey area. Today we have finalized the details. On May 28th we will hold our first meet up.

Over the years I have found that CCFA has been losing touch with people with IBD. I personally asked for a support group to be formed by them in the Northern NJ area but they denied it. So, when Brian from IIF heard I wanted to start up a group, he asked me to join on to help IIF in bringing groups to the NY, NJ and CT area. This will be the first of many new groups.

If you actually live in the area and want to come please let me know or email the IIF at Info@IntenseIntestines.org

Colonoscopy Time

Feb28

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.

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.

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!!!

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.

IBD Prom

Feb10

So, as promised, here is one of the things I have been working on. For a number of months now, I have been working with Sarah and The Crohn’s Journey Foundation. They are based in California and are now wanting to break out on the East Coast. As their introduction, they are holding a Prom style dance.

So I want to officially invite everyone to the IBD Prom ~~at The Peninsula New York hotel on April 11th~~. ~~Tickets can be purchased here http://thecrohnsjourneyfoundation.org/products-page/events/ibd-prom/ Please RSVP by March 25th, but the sooner the better as space is limited.~~ There will be a DJ for music, delicious food and drinks, a photo both and a silent auction with great items.

I have been helping to organize this and have been having such fun doing it. I have been speaking with so many great people to get this together and even connected with a famous person in the music industry that also has IBD (name will be withheld…for now). I am hoping to get a donation from this person for the auction.

In case you are wondering, no you don’t have to have IBD to attend. It is for anyone that has IBD, knows someone with IBD, anyone that wants to support people with IBD, or anyone that wants to party like it’s 1999.

If you have any questions, please feel free to ask me. If I don’t have the answer, I can get it. So I hope to see many of you there. And if you do come, please don’t hesitate to come up to me and say hi.

UPDATE: Sadly, the prom had to be rescheduled. There is no new date, but the target will be April of 2015. As soon as I have more information I will let everyone know.