IBD and Relationships (Repost)

May15

In the spirit of World IBD Month and my busy schedule, I have been reposting my old posts. Today, I will be reposting my post about relationships. Keep in mind that I am a guy so this is from a man’s view. I know women have their own thoughts which may vary.

I have seen a lot of questions and discussions about this topic. Crohn’s Disease is such a private and sometimes gross disease. Many people ask “When in a relationship should I tell my partner that I have Crohn’s?” On top of this, I hear “How do I tell my partner I don’t feel sexy/want to have sex?” For women, in my opinion, this is easier to deal with than men.

First let’s tackle the first question. A lot of people feel ashamed about having IBD. Whether it is Colitis or Crohn’s, a lot of people don’t want to talk about it for feel that people will look at them differently. When it comes to dating, this is a real big issue. I know women don’t want a guy to know because they don’t want to disgust them or turn them off. When you first start dating, for a woman, they want to feel and look sexy. But what about a guy’s view? What does it say to a women when a guy has to go to the bathroom 5 times during a date. The first thought might be, “He’s doing drugs”. Another thought is, “Maybe he doesn’t like me and is calling another woman”. Truth is guys have the same thoughts and feelings as women. We want to look good also. We want to feel strong in a woman’s presence. Most guys want to be able to take control and treat a woman right. We can’t do that if we are in pain or running to the bathroom. We can’t do it if we are constantly feeling sick.

So I say, as far as telling that new person, tell them right away. It is a lot to deal with, but a lot of times IBD will run our love life so let them get used to it. I wouldn’t tell them when I first meet the person, but talk to them on the first date. Let them know that if you have to run to the bathroom..it isn’t their fault. Let the other person know you want to be there to talk to them but you have to leave for a brief moment. If you’re a guy and your want to look strong, then telling the truth is being strong. Opening up to a woman is being strong. Honesty is the best policy. It will help strengthen the relationship.

Now, if the other person gets scared at this and runs..well then it really wasn’t meant to be. You should know if the other person can handle your disease right away. Now I don’t think you have to tell your whole life story with the disease on the first date. Just let your partner know what they can expect. You can go into details another time.

Now, later on in the relationship (or marriage) IBD and sex will come up. There will be times you won’t want to have sex because of the symptoms. Again…be open and honest. If you’re having sex, then you should be in a place in the relationship where your partner knows your disease and can understand it a little. Let your partner know it isn’t their fault that you don’t want to have sex. For a guy this is rough since we are made to look like sex addicts…like we want sex 24/7/365. Truth is, there are plenty of times we don’t want to have sex. There are times our arse hurts and is sore. We might be sick to our stomach. We might have joint pains. None of this is going to make us want sex. And these symptoms can last for days and weeks. That is why I say be open and honest with your partner. If you aren’t having sex for weeks, and you don’t talk about, your partner may wonder what is wrong. They may feel like you aren’t attracted to them anymore or worse…is having an affair. Let your know partner know it isn’t them.

So, overall..be open and honest. Don’t be ashamed of your disease. You are going to have it the rest of your life. Let your partner into your life and let them know that they are in the relationship with both you and your disease. I have found that overall, if the person can’t handle it…they aren’t worth being with anyways.

Crohn’s Disease and Depression (Repost)

May13

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.

A Man With Crohns (Repost)

May12

I originally posted this on May 31 2012. I thought this would make a nice repost. I chose this one to repost because within the past year I have gotten many followers and most are women. When I first started to advocate one of my goals was to get more guys to open up. I have to say, within the past year I have met a lot more men (and boys) with IBD but I almost feel like it is a woman’s club 🙂 So, this was my guys take on IBD.

When I hear the word manly or macho, I tend to think of a guy, muscular, wearing a sports jersey, sitting on a couch surrounded by friends, chips and dip on the coffee table, watching football. I probably got this image thanks to numerous commercials depicting this. Some people may have a different image. Some tend to think of a tall lumberjack in plaid. Some may think of a fireman running through flames or a cop rescuing someone. Still others may think of a soldier in uniform fighting for his country, saving innocent people caught up in a crossfire. My point to this is no one thinks of a guy laying in bed double over in pain who has to jump out of bed to run to the bathroom. Then on his return trip to the bed, picks up a garbage can to vomit.

Sadly, that is what a lot of us go through with Crohn’s Disease. Growing up in the 80’s I was what we would now call a nerd. I was into video games, Dungeons & Dragons, playing with GI Joe figures and spend my Friday nights at Boy Scout meetings. I would watch some sports (Go Yankees). I never liked alcohol. I also was not a ladies man. I was never macho..but I was still a guy and acted as one. When I was 15 I got sick with Crohn’s and it would forever change me.

For about 2 weeks I was so sick I would stay in bed all the time. I lost a lot of weight and eventually ended up in the hospital where I got diagnosed. I was put on Azulfadine and eventually got better. When I was 16, I came down with pneumonia and this caused me to flare. I would not recover and missed my junior and senior year of High School. I was growing up, starting to form the person I would be and this was all taken away from me. I would spend my days in bed watching TV. I also started to learn to cook and do laundry since I was home and had nothing better to do. Let me tell you…this does not make you feel manly or macho.

Flash forward 23 years. I am now a grown adult still battling with Crohn’s. I have found my way in the world. I met the woman of my dreams. I do feel like a man now. I still love my Yankees and try to go to some games every year. I still cook, but that has become a man’s job now (Bobby Flay, Emerel Lagasse, Guy Fiere, Mario Batalli just to name some). I like beer (miss my Sam Adams now that I am gluten-free).

But I still have my pains. I still run to the bathroom. What my point is, as a guy, we can’t worry about image. We don’t have that luxury. Guys…you can feel weak. At times you will get depressed. You will have pain. You will have a fever. For some of us, we will spend time in a hospital unable to control anything. None of this make you less of a man or a person. Do not let social media tell you how you should be. You are a man no matter what. You are strong and can get through anything. If anyone tells you otherwise, then they aren’t worth your time.

It is not week to break down and cry sometimes. It is not weak to have pain and suffer from depression. It is human. We all go through it. You are not alone. You are still a man…no matter what.

The Health Activist’s Writers Month Challenge – Day 30 Recap

Apr30

You made it! 30 posts in 30 days! Today, write a recap of your experience. What was your favorite prompt? Least favorite? What have you learned?

And another writers challenge comes to an end. Somehow this one was a little easier to write for then the last one I did. But, 30 posts in 30 days. Really makes me think of burnout. Not the pit of despair that I talked about on day 20, but writers burn out. It isn’t easy to come up with 30 posts so fast. I was given the topics which help but just trying to think of what to write puts a toll on the mind. After this I need to take another break.

Looking back over the post I see I had some pretty decent ones. I think my favorite one, and it wasn’t the longest or the best written, was Day 5 Aspiration. The more I talk about what I want to do in the future the more excited I become. Just the other night I was talking to some friends about my dream and they really got me excited over it. It feels good to have something to strive for in life.

Now, for my least favorite..well this is a hard one. I think my least favorite was Day 25 Learning. It isn’t that I didn’t like the post. It is my least favorite because it is the first time my post caused a controversy. I got a lot of messages about this one and about what ME is. I kind of jumped the gun when I wrote the post and didn’t do the research first. But, as a writer not everyone will like what you have to say and will let you know that. So I guess that post helped bring me up in status. I feel I am in the Big Leagues now.

As for what have I learned…well I did learn about a new disease (ME). I literally learned from my mistake. I also learned humility and how to accept that I did something wrong and admit to it. After all, I am human and we all make mistakes.

So, as the challenge ends so does this post. Spring is in the air and I will probably be stepping away from the computer for a bit to enjoy the season. But don’t despare. There is a lot going on in my life and I know I will have more to talk about soon. So until then, go out, enjoy the day….and see you soon.

The Health Activist’s Writers Month Challenge – Day 29 – Congratulations

Apr29

We all know Health Activists are awesome. Share three things you love about yourself, things you’re great at, or just want to share. Don’t undercut or signpost!

This is a hard post for me to write. I don’t like to praise myself and tote my achievements. I am a quiet person and keep a lot to myself. But for this, I will try to open up a little more and bring you more into my world.

1. One thing I am great at…or I like to think I am…is cooking. I took culinary arts in college and have a degree in cooking as well as management. I may not be the best but I think I can handle my own in a kitchen. Sometimes I have trouble thinking of dishes to make, but I can definitely take a recipe and make it my own.

2. One thing I love about myself is how I have been able to open up so much. Growing up I kept a lot of things to myself. I was a very closed off person. No one really knew what was going on in my head. This blog has really helped me to open up. What has really opened the flood gates to my emotions is my IBD community. Everyone I have met, whether it is in real life or on the internet, have been non-judgemental and always have an ear for me. This in turn has helped me to do the same for everyone else. I am so happy to have found my community as you have all helped me grow.

3. One thing I want to share is that even though I have grown I still want to be a better person. I want to do more to help. Throughout the years I have always felt something was missing from my life and now I know what it is. Helping others is so rewarding spiritually. One thing I still want to do is start a charity but I need a lot of help with that. The one thing I need before I move forward is a board of directors. Once I get that, I plan on moving on it. I have tons of ideas…just need the help.

The Health Activist’s Writers Month Challenge – Day 28 Must Follow!

Apr28

Create a must follow list for your community on a single social network. Share your top 5-10 tweeters, blogs, or Facebook pages.

I look at this topic and think…I have done this numerous times already. In fact, we have done this already during this month. So instead I am going to deviate a little.

Last week, I was awarded the “I am a Part of the Family” award from the wonderful women at Below the radar. The post can be found here http://belowtheradar002.com/2013/04/23/bursting-hearts/.

I actually talk about Amanda from BTR in a previous post. She was always in my mind because she has been suffering so long and no doctors could figure out what was wrong. To know that she thinks of me and my struggles give me comfort that what I set out to do is working. People are starting to know they are not alone.

So of course to accept this award there are stipulations.

Here are the rules for accepting:

Display the award logo on your blog.
Link back to the person who nominated you.
Nominate 10 others you see as having an impact on your WordPress experience and family
Let your 10 Family members know you have awarded them

And here now are my nominations:

1. Louise at http://youngcrohns.wordpress.com/

2. Cetta at http://cettawrites.com/

3. Sara at http://www.inflamed-and-untamed.com/ (not wordpress but still family)

4. Kelly at http://sickgirldiary.tumblr.com/ (Again, not wordpress but still a great family member)

5. Mary Claire at http://resiliencyspace.blogspot.com/ (Ok, so these aren’t WordPress…but Mary is such an inspiration)

6. Christina at http://livingsick.com/

7. Marisa at http://keepingthingsinsideisbadformyhealth.wordpress.com/

8. Shay at http://asizcreatives.wordpress.com/

9. Heidi at http://ostomyoutdoors.com/ (She really shows that an life doesn’t end with an ostomy)

10. Stephen at http://stephendempster.com/

Each of you are an inspiration to me. Keep up the great work and thanks for being there not only for me but for everyone.

The Health Activist’s Writers Month Challenge – Day 27 Titles

Apr27

If you wrote a book about your life, your community, your condition, or your Health Activism – what would you title it? Come up with 5 working titles.
What about your biography?

This is funny because growing up I wanted to be an author. I had always loved to read. As I got older I realized I couldn’t write so well. So that dream died.

Then I go and start a blog. What is a blog but just short stories. My parents read this (hi Mom and Dad) and are always saying I should write a book. Problem is my memory isn’t the greatest so it would be real hard to write one about my past. But..I can write one about the present.

So if I was to write a book about my life, my community, my condition or my Health Activism…what would I call it? Hmmm. Well here are some ideas.

1) IBD…All Guts, no glory.

2) IBD Warrior – How I Fought the Disease and Won

3) My Life as an IBD Warrior (This one is plain but says a lot)

4) No, IT’S NOT THE FLU!!!

5) Poo! No, Not the Bear.

The Health Activist’s Writers Month Challenge – Day 26 Pain Free Pass

Apr26

What’s a day that you wish you could have used a pain-free pass (either in the future or the past)? How would being pain or worry-free impact that day?

As most of you know, I don’t get too much pain from my Crohn’s. I know there are many out there that have pain all the time. Whether it is from strictures or inflammation or obstructions, pain is a reality with IBD. Since I have a mild case, I have been spared the pain…most of the time.

There are some days though we I feel some pain. For me it feels more like someone touching an irritation. It is usually dull and annoying. When I do get these pains, I worry a little because since I don’t normally get them it is usually a sign of a flare or that I am getting sick.

So to answer the first part of the question, I can’t say of any day I wish I didn’t have pain. It isn’t really part of my life. In fact part of me likes it because it is like a signal that something is about to happen.

Now if we talked about having a symptom free day….that is another story. I don’t have pain, but I can go to the bathroom a lot at times. I get run down and lazy. My eyes are getting worse. Rashes don’t heal as fast. My joints ache at times. I would gladly give all of this up. If I had to pick one day, I don’t think I can. I think a lot of people might say that for their wedding day they would like to be symptom free. I know for mine, I was so happy that I didn’t feel nervous so I didn’t have a lot of symptoms that day.

Thinking about my life, I can’t pick just one day where I would like to be symptom or pain free. Of course I want to, but I just can’t pick One day. There are times though when I read online when some people have really bad days. There are days when I read about Kelly, a fellow IBDer who suffers from so much and is always in pain. On her worse days, I feel like I want to take that pain from her…even if it is just for one day. I think the activist in me wants to help so I would want to take some of the pain from those that can’t deal. I wouldn’t mind a day in pain here and there if it meant someone else can be pain free for a while.

This is a nasty disease. It robs us of so much. I just would like to be able to give some people back a normal life so they can enjoy what I have been lucky to enjoy. Everyone deserves to live pain free.

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

Apr25

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.