Who Could Ever Love Me and My Wonky Gut?

I belong to several support groups and one of the most common conversations is about relationships. Friends, Family or Romantic. Can we REALLY be loved with all the terrible things our bodies go through? Why do my friends all disappear after a while? What do I say and do with the people who shun me or try to offer advice?
I can say from years of experience, it is VERY possible to be loved. The tricky thing is that, when we are dealing with a chronic illness, particularly whats called an "invisible illness", meaning we don't always outwardly look sick, we have to realize and take into consideration that all those around us are effected. Your children, parents, partner, friends, co-workers. Everyone. And not everyone is supportive or understanding. And we have to be okay with that and let them go and move on. The reality is that our sickness can and does cut us off from the world on occasion. We have to cancel commitments at the last minute, take off work, not answer that phone call or email because we are so sick its all we can to do get through a day. Not everyone can cope with that.
I know personally, I have lost friends and even a husband because of dealing with Crohns Disease. My husband was cool with the good days, but not strong enough to deal with the bad. Yes, it hurt. It hurt a lot. I felt like I was less than, not worthy. then I realized something. I am NOT less. I am more. I am strong and I AM lovable. His loss. Not mine.
And honestly, nothing is better at weeding out the people who are toxic and showing us who are the ones we love and cherish for life, then times of adversity. One thing someone said to me once really resonated with me, "If they can't hang with you during the tough times, they don't deserve to hang with you in the good."
Harsh? Maybe. But life is harsh, no matter if you deal with illness or not.
Many people are well meaning, but don't really know what to say or do. And so many what to help or think what we are dealing with can be "fixed". A complaint a lot of "Crohnies" have is people who say things like "what about this diet?", or "maybe you need to sleep more?", or "but you don't LOOK sick?".Its so difficult to not take offense and immediately get our guard up. Remember, most people are genuinely interested in helping. So smile and thank them and maybe consider what they say. Or better yet, teach them about your disease. Yes, there are always those negative people who say snide remarks or doubt us, or that every present "one upper" who's been sicker than you and who ate only Kale for a week and is "cured". Let that crap roll right off your back. In the long run, do they really matter?
I am extremely fortunate in my life. I have family who love me and who are supportive in my health and life 100 percent. I have a small, tight group of friends who also understand and support me. And I have a partner who not only supports me but is my biggest cheerleader, confidant, sounding board and comfort. He is unfailing in having my back.
It's possible to have all that. I have found that the one thing that really counts is owning who you are. Trust in yourself, be confident, congratulate yourself every day for making it through that day. Moment by moment that we are breathing, and we are fighting and we are educating others, is a moment of success.

Welcome to my Blog!

Since a friend messaged me and suggested I start a blog, I have put a lot of thought into it. I tend to ramble uncontrollably in speech, so my fear is I would in type as well. But, frankly, its MY blog and I will ramble if I wish.
Most people who know me really well, know I battle Crohns Disease every day. I also have Rheumatoid Arthritis which is also no fun. But in my research I did discover that Auto Immune Diseases can, and most often do, come in multiples. Yay!! for my crappy immune system.
So I guess with the first attempt at blogging, I will give a bit of background while attempting not to go to far off course.
From a very early age I always had problems with belly troubles. I remember my Grandmother asking me if I had a "healthy BM" more than once. And while embarrassing as a child, its a discussion I am entirely too comfortable with now. My childhood was not an easy one, which is a story for another day, but I assumed it was why I spent hours in the bathroom it so much agony I literally pulled my hair out.
Fast forward to my teens....
When I was 18 almost 19, I was already married and expecting my first child. During my pregnancy I had problems with kidney infections and my OB/GYN decided to just put me on an antibiotic for the entire last three MONTHS of my pregnancy. Needless to say, bad bad bad idea. But as a young woman completely out of her element, I trusted the doc. Later we found out they had stripped the bacteria in the gut past the point of return.
Shortly after my daughter was born, I began having really serious issues. I couldn't eat without throwing up or having the worst diarrhea in the history of the world. I was back to rocking and crying in pain in the bathroom for literally hours at a time. The doctor originally diagnosed Ulcerative Colitis which is also a serious disease, and began treatment with steroids and sulfa drugs. I did respond for a few months and was doing slightly better. Then when my daughter was 5 months old, it flared back up with a vengeance much, much worse this time. I wish there was a way to explain the pain in a way that people understand. Its like something is burning and cutting and pulling and pushing your insides to the point where its hard to breathe.
I was breast feeding at the time, and due to being so ill and losing so much weight so quickly, my milk completely dried up within a few days. It was so bad, that when my daughter was in a walker, I tied a rope to it and to the leg of the couch so that I didn't have to stand up to chase her down. I had no energy and no strength. I literally crawled down the hallway to the bathroom because standing was more than my depleted body could tolerate. Eventually,right after her first birthday, I went to the bathroom...again in agony...only this time it was trouble. I was bleeding. And not just bleeding a little bit. I was hemorrhaging rapidly. My Mom called the doctors and we rushed in and I was immediately hospitalized. My colon had become necrotic, dead, and was breaking apart inside. The disease was winning. My blood counts continued to drop and the doctors called the family in. I had little chance of surviving surgery, but surgery was all that could save me. On my 20th birthday I went into surgery not expecting to come out again. I had to say goodbye to my husband of 2 years and my infant daughter. I was so sick at that point its more like a foggy dream than a reality. But I did survive surgery. I was in ICU several weeks. They were amazed at my ability to heal but I woke up with a life changing situation. I now had a 2 1/2 foot incision from sternum to pubic bone and a plastic bag stuck to my side. They had to remove the colon so I had an Ileostomy. It was a shock to say the least.  I had never heard anything but whispers and snide remarks about people with a "BAG" and was terrified. Pooping in a BAG stuck on my SIDE?! ugh!!! How could I be loved or wanted or feel like anything but a science experiment?! BUT, I had a choice. Pout and whine and cry or deal with it. I chose to DEAL with it. I had nurses who taught me a lot. I sewed little fabric covers for the bags so I didn't sweat under the plastic on my skin. I wore clothes that masked it. And very few people even knew. It was hard though because I KNEW.
But I wasn't sick anymore. no more pain, no more living in the bathroom, and I could EAT AGAIN! Oh boy. That was not a good thing. I ended up gaining a lot of weight. 6 months after my surgery I was pregnant with my second child and had a perfectly wonderfully uneventful pregnancy and delivery. Even with a bag on my side.
This is not to say it was easy. I still had body issues, I worried people would KNOW (like it was some kind of horrifying thing) and I went into a pretty hard depression that lasted for several years. I was allergic to all the adhesives that the bag and its appliance used to hold it on and eventually I ended up with painfully raw and infected skin around the stoma, which is the opening that comes through the abdominal wall. I stopped being able to really go out because the bag would fall off at the most random moments, which if you are in the grocery store with two young children and you suddenly feel something running down your leg, that is horrifying. Truly truly incredibly horrifying.
I was told I would need another surgery to remove the remainder of my colon and the bag would be permanent and I almost lost it. I was so ready to crawl in a hole and just disappear. But then I found out about a surgery called B.C.I.R. (see bcir.com) which is basically an internal collection pouch made out of your small intestine and you use a catheter a few times a day to empty. No bag. No leaks. No expense. I was SO IN!!
In 1996 I traveled to St Louis and had the surgery that completely changed my life. I can't even explain the immense weight that lifted off after I had this surgery. I was out. In PUBLIC! Amazing. It was a difficult surgery. No lie. Another full on sternum to pubic bone incision along with one that went from the top of my butt crack all the way around to my female bits. AND several small inch to 2 inch incisions for drains all up and down my sides. But. NO BAG!
Fast forward several years. I began having some serious health issues again in 2001. unable to eat, pain, vomiting etc. The doctors thought gallbladder. So I had that out. Pretty uneventful surgery except because of my surgical history, they did a full incision instead of the laproscopic ones. 3 days after surgery I woke up in the worst pain ever and violent vomiting. Back to the hospital. This time it was determined I had serious scar tissue blocking off my stomach and small intestine and ended up in yet another serious, major surgery and stint in ICU. They weren't really sure WHY I had such serious scarring. But for the next few years, the intestinal issues continued and I began having joint pain, swelling, unexplained fevers, fatigue so bad it was all I could do to drag myself out of bed some days.
Eventually things got so bad I had several hospitalizations for dehydration, pain management etc. Had to go to tons and tons of specialists. At the time Crohns was suggested but never really defined as a specific diagnosis.  I did get a definite diagnosis of RA though. Which is an entirely separate problem.
Eventually the Doctor I have now said definitively that I have Crohns Disease. Dealing with this is not easy. This is not a "pooping" disease. This is my body's immune system attacking itself. Along with the gut issues, which include horrible pain, embarrassing LOUD grumbling and nausea and vomiting, come severe joint problems, skin irritations, fatigue from not being able to absorb the nutrients the body needs to function, weight fluctuations, swelling, fevers, circulation problems...and it goes on and on. This is a life long battle.
I have had people say I am so positive and upbeat despite it and ask how I do that. Trust me, I have horrible days. I have days I want to disappear from the world. Days I want to scream and cry and wail. But honestly, what does that do? Even if I feel horrible, and I do almost every single day, if I get out and stay busy and smile at people who smile back, I feel good about that. I feel alive and strong and in control. This disease will not...WILL NOT...destroy my life.