Today is all about Body Image. Currently uploading a video for you guys on it. It’s definitely a work in progress for a lot of us who have Crohn’s disease or ulcerative colitis. There was a time that I felt ugly simply because (I thought) my insides were ugly. IBD changes you from the inside out. Add to that our medications that alter our appearance, and the fact that at times it changes our bodies abilities to do things.
Do you guys ever go through this?
Watch this months IBD Round Table where 4 panelists (myself included) talk about life with Crohn’s disease and ulcerative colitis.
During the end of August just a few years back I should have been headed back to school. Instead I was fighting for my life. I don’t say that lightly. They legit didn’t think I was going to make it. So much so that a year or two later when I went to the hospital to visit some of my nurses a few of them broke down and cried. They couldn’t believe that things turned around for me.
During this time a few years back I was in the Intensive Care Unit. I had already been in the hospital for about two months at this time, went through the first of my two surgeries, and had an ostomy. There came a day where I was laying in my hospital bed and my mom was there visiting. It was unusual because during this particular time of day in the hospital I was usually alone. My visitors tended to be with me earlier in the day or later at night. Sometimes I think that things happen for a reason, and I do believe that my mom was in my room with me at this time for a reason. Out of nowhere I began to convulse uncontrollably. My body felt extremely cold and I remember my teeth chattering and my body shivering until that was overcome by convulsions. There would have been no way I could have called for help, and even so - we all know that sometimes nurses are not the fastest at answering that call button. I think my mom being in that room with me had a purpose, what would I have done if I were alone and no one could run to get help?
Before I knew it they were putting ice blankets on me (why!! I felt soooo cold) and taking my vitals. It turned out I had a temperature of 106 degrees. And that is where my memory of this event ends. The days that followed I have no recollection of. All I know is that I was put in the ICU where I spent some time. Turns out I got an infection from my PICC line, and if you know anything about that then you know how life threatening it is.
That particular situation got better but other things got worse. I began to vomit large volumes of bile up multiple times a day and eventually was throwing up these large volumes of bile every few minutes. The pain that I was in was worse than I could ever describe. This led me to my 2nd surgery being an emergency surgery because I had adhesion’s that were strangling my small intestine and creating a full blockage. Sitting in the prep room before I went into my surgery being in that amount of pain and holding that little pink bucket they give you to throw up into, I couldn’t take it. I couldn’t take the pain for a minute longer I felt. I was throwing up on that stretcher right before my surgery just praying and praying to go under the knife sooner because I knew that they would put me out and all I wanted was to be gone. To be asleep for awhile…to not feel for awhile.
I woke and no longer had my ostomy but had my j-pouch hooked up. I thought that maybe from here things would turn around and get better but they didn’t. Complication after complication led to me being in that hospital until December. Even after being released after six months things got worse before they got better.
In the beginning of September that year I was supposed to be headed back to school. Instead, I’ve never been back. This is something that up until recently I have felt very ashamed about. I am incredibly smart and extremely driven. Education has always been a priority of mine; I’m one of those weirdo’s who would go to school forever if she could. I left school after winter semester where I failed the whole thing. I didn’t know about 504 plans back then and I was so sick that I couldn’t attend my classes. So sick that I needed 3 blood transfusions right after that semester. I was running fevers of 102-103 each night and sweating out those fevers while I slept so that I would wake up soaked. I was in the bathroom a minimum of 15-20 times per day and a max of 52. I was on steroids and enemas and my regular IBD meds and in the worst pain of my life. All this while trying to go to work and go to school. You can imagine that it became impossible.
I left school thinking that I would be back in a few months. Not knowing that I would be having surgery. Having no idea that my life was going to take the turn that it did. I didn’t go back to school in the fall that year. I was in the hospital thinking that I might not live. And honestly, sometimes feeling like I didn’t want to. At least not if it was going to be like this.
Obviously things did eventually get better. And yes, I could have gone back to school. Not then, but a year or two later. Never finishing my degree has often made me feel like a failure. I feel like that stupid piece of paper somehow validates my intelligence. In truth, I am smarter than most of my friends who do have degrees. The only thing that separates us is that they made it to the end. In what seems like a previous life I wanted to be a high school teacher. That is what I had set out to do and had I never gotten sick that is probably what I would be doing today. But like I mentioned above, sometimes I think things happen for a reason.
In March a few months after I got out of the hospital that year I was searching craigslist for any random job. I was so used to working all my life that I hated not working even though I knew I was sick and I needed the time to heal. All I wanted was to get back on my feet and do ANYTHING! I ended up with an interview at a salon about a half hour away from my parents house (I moved back in with them when I got sick) to work their front desk. I figured I would work there for awhile and eventually go back to school. But…I kept getting sick. I kept going back into the hospital. And here I am years later, STILL going in and out of the hospital.
I had no idea when I took that job that I would still be there today. When I interviewed I had gained weight from 82 pounds to about 95. My hair was still mostly missing and I looked horrible. I still have no idea why they hired me, but I am so glad they did! 4 1/2 years later I still haven’t finished my degree. Instead I found a job that works better for me. I found a place where I know that I can go into the hospital and still have a job when I get out. I have a place that allows me to pick my own hours and I have a very supportive boss. I met my very best friends there. I hate to admit it, but I can’t be a teacher. I know that I would be fired for all the days that I miss being in the hospital or being sick. And I would feel like an awful teacher for missing so much class.
Sometimes when I tell people I work at a salon I feel like they are judging me. I feel like there is this misconception out there that I must be uneducated if that is my job. The truth: I work at one of the best salons in my State. Where people are making six figures easily, and much more than some people with their little degrees. I work with a farmer, a zumba instructor, students, plenty of people who do have degrees, and very dynamic artistic people. I’m no longer ashamed that I never went back to school. I was given a gift when I was hired there. This works for me. It works with my disease. And I couldn’t think of anything else i’d rather be doing these days.
We have been doing a lot of “back to school” talk in the Crohn’s disease and ulcerative colitis community lately and it has brought me to thinking about all of the above. I could go back to school and get my degree but for what? I don’t need it anymore to prove anything. And teaching? I feel like I do that now at Camp Oasis, on this blog, during my videos, and in so much more. I feel like I teach lessons every day to the people I know and the new people I meet.
I’m one of those people who “has to know”. When I was (wrongly) diagnosed with ulcerative colitis as a teenager I researched it to death. I needed to know what it was, what caused it, all the medications, symptoms, surgeries, and more. I am like this with everything in my life. I am a learner, a collector of information.
One thing that drives me crazy about having Crohn’s disease is that the answers for things are not clear cut. I am bringing this up right now because of fatigue.
If it were not for awful fatigue I would be doing alright at the moment. (That’s a whole other big fat WHY? Why am I doing alright at the moment when I am on the exact same treatment I am always on? Nothing has changed but sometimes I can be in the hospital and doing awful and then nothing changes in my treatment but things get better. WHY?)
I have experienced terrible fatigue because of this disease and during certain times I have been able to tell you why. The fatigue I felt after my surgeries and months in the hospital was easy to explain. Look at all my body had been through; of course I was going to be tired! But right now… where does this fatigue come from? I’m not even living the lives of normal Americans. I’m not married, I don’t have kids, I don’t go out much, so why am I this exhausted?
I have been falling asleep super early lately. Last week one night I fell asleep at 7:30 pm and slept until the next morning. Most nights I am falling asleep much earlier than usual and waking up later and later. It’s not just more sleep, it’s everything. I am SO tired! I cancel plans even when I want to do something because I just can’t. I’m too exhausted…but why? This isn’t just normal fatigue either. This is a tired that is hard to explain to “the norms”. <—That is what we shall call non-sick people. ;)
And this is how Crohn’s disease is. The answers are not always so easy. It could be one thing or a number of things causing the fatigue. I have a disease. That alone causes fatigue for many people battling a chronic illness. Your body has to work extra hard because it wants to “fight off” whatever is attacking your body. That takes extra calories (extra energy) for the body. With an autoimmune disease our bodies are in constant confusion. They are wrongly attacking healthy cells in the GI tract turning that inflammation switch on, and then our body becomes at war with itself. No wonder it’s tired! Crohn’s disease is classified medically as an autoimmune disorder. In short that means our body is working against itself. Fatigue seems like a reasonable outcome doesn’t it?
But is it that or is it something else? Is it the side-effects of my medication. Perhaps it’s the remicade that is causing me all of this fatigue? I mean, that stuff is no joke. It comes with a black box warning. I’m poisioning my body! So no doubt it could be the remicade. But is it? It could be, but there is no way to tell for sure. Is it my lack of large intestine? Am I not absorbing enough nutrients? Are my electrolytes off or am I dehydrated? Is it the Crohn’s disease itself and maybe I am in a flare up and I just don’t know it?
The truth is it could be any of these things or a combination of many or it could be something else entirely. All I know is that I am exhausted. Other than the fatigue I have been pretty good for the past couple weeks, so I guess I can’t complain. I just want my life back fully you know? The old me seems like such a distant memory at times. There is a “new me” who exists now and I like a lot about her so very much. I just wish I could combine the parts of the “old me” that I like with the parts of the “new me” that has resulted from all the hardships I have been through and overcome.
When I think about who I used to be I can’t imagine my life that way any longer. I spent hours and hours in the dance studio. An average week was school during the day, about 12 dance classes per week that I took, about 10 dance classes per week that I taught/choreographed, plus working in the bakery decorating cakes. I was able to do all of that plus make time to work out in the gym and have a social life. Just thinking about this now makes me tired! I want that life back. I want to be able to do the things that I want to do. It seems so unfair at times. Right now I only have a few hours each day where I can get things done. I have to pick and choose what I do. If I go to work one day then that is all I can do. After that I am so tired I come home and crash. It’s sad. I look at the people around me who lead normal lives and it is hard not to be jealous. Hard not to miss it, since I had it before. And extremely hard not to compare myself to other patients who have ulcerative colitis or Crohn’s disease and are able to do more than I am. That is the really difficult part. Watching the people who have had the same surgeries, who are on the same treatments, etc. but are doing much better than myself.
It’s not a comparison game. Everyone with IBD is different. One person can respond well to a biologic and another won’t respond at all. One person will have a successful j-pouch surgery and another’s will fail. On and on it goes. I am human and I have short-comings. Sometimes I fall victim to the “poor me” game. But what is stronger than that is my determination to live the best life I can. I just want you to know it’s okay to be human. It’s okay to wonder “why me”. Just pick yourself back up again and keep going. I’m cheering you on!
I hate the uncertainty. I hate not knowing why…
Taking my skills out into the world and helping women who are battling self-esteem problems due to illness!
I want to share something with you guys today that I am SUPER excited about. In a few weeks I am going through training for Look Good Feel Better. It’s a program where licensed beauty professionals help cancer patients. I feel like this is right up my alley and that it’s a way that I can give back.
I know first hand the terrible battering your self-esteem takes because of illness. When I think back to what I looked like after my longest hospital stay during one of my sickest times, well actually here - this is what I looked like once I got out. And these are the “good pictures”. The only ones I took actually because it had actually gotten much worse after these pictures were taken and I wasn’t very camera happy. This is why I have to repeat using the same pictures so often on my blog.
The result of 6 months of hospitalization and not to mention the many months beforehand of fighting for my life. My self-esteem was near gone. I had lost so much weight I got down to 82 pounds. My normally thick and coarse hair had been falling out for months in the hospital that when I got out there wasn’t much left. My now emaciated body was so tiny that when I would lay on my back it hurt because my tail bone protruded. I normally have this quest to be skinny but this was too much! I wore size double zero skinny jeans with long johns under them…hell, my underwear hung off me! Steroids left my face puffy and my body full of acne and the change my body went through with it’s surgery scars, the adjustment to having to wear an ostomy bag, and then the adjustment to life with a j-pouch. A j-pouch that wasn’t working in the beginning so that my skinny, ghostly white, beat up body had to wear adult diapers. I cannot begin to tell you the damage all of this had on me mentally. As women we are constantly being sent messages throughout life about what is attractive or sexy. There was absolutely nothing sexy about me and I slid into an even deeper depression than I had already been in for the past year.
Going through all of that is what really makes me want to volunteer for Look Good Feel Better. I get to teach cancer patients makeup tricks like how to draw in their eyebrows with makeup if they have lost them because of chemotherapy. I get to share with them all my beauty secrets about skin care, makeup, hair, and nails and I think that having the knowledge of going through what I did will help me even more. I can tell them certain products that I have used when I was on high doses of IV steroids. Some of the chemotherapy drugs that they are on are ones that I have taken before (like methotrexate) or similar to some of the biologics we take. This program teaches these women with cancer how to manage the appearance side-effects of cancer treatment and they also get to meet other patients who are going through it too. I know how important that is because meeting patients with Crohn’s disease and ulcerative colitis has been extremely valuable to me.
This program combines everything I love! I can’t wait to give back to others who are sick in more ways than I already do now. I will update you more once I go through the training and start volunteering!
It’s been about two months now since I have been out of the hospital and I have noticed something in me that I’ve been a little ashamed to admit. I’ve been quite negative since getting out. Maybe you have noticed it too?
The hospital scares me. It takes hold of my life and shakes everything up and then spits me back out into the world left to pick up the pieces. I have had the hospital calling my cell phone multiple times daily to try and get me to pay for the new medical debt I have racked up to add to my old medical debt. I have had them sending me bills in the mail and now they are even calling my parents house. Being admitted to the hospital again caused me to miss out on a months worth of work. How do you pay bills when you have literally nothing? My cell phone gets shut off every now and then and I have to make stupid decisions like “you only have $10 so you can use it for gas but you can’t eat, or you can eat but you can’t go anywhere”, and then I wait for the next pay day to collect what little money I get. Want to know something embarrassing? One of my recent paychecks was only $70. That is for TWO WEEKS. Because even though I am out of the hospital now I wasn’t doing well enough to come back for my regular shifts.
All of this leaves me feeling hopeless. Like a failure. Excuse my language but it makes me feel like a POS. It it so unfair when your body does not allow you to do the things you want to do, and know you can do if only you weren’t sick. *sigh*
So yeah, since I have been out of the hospital my attitude has sucked and I hate it. I also have more anxiety than I typically do. My phone rings and I panic because it’s usually someone calling to collect money. I don’t even look at it, I don’t answer, and when my voice mail box fills up I just delete all the messages without listening. I don’t want to get the mail or send mail because it reminds me of all the responsibilities I have that I can’t take care of. And then there is just the anxiety left from experiencing so much trauma. What it is like to be alone in the hospital and feel so helpless.
The reason I write today though is because I have good news and really, I have a lot to be thankful for. It started off with the most random act of kindness. A client at the salon (who isn’t even my client) gave me such a generous gift that she made a huge impact on me. This gift was so unexpected and so thoughtful that she not only helped me out in a difficult situation but she put a smile on my face. She gave me some hope, and I really needed that. And since that day I have been feeling better. So thank you Amy so very much. The impact you had on me is something I can’t express well enough and I just want you to know that, and know how thankful I am for you.
After that day I started thinking about this year. This year has actually been pretty great! I have SO MUCH to be thankful for in regards to this year. My friends threw me my very first surprise Birthday party. It was the best Birthday I have ever had. I finished my apprenticeship at work and I am finally the “real deal”! The IIF flew me out to New York and I got to advocate for Crohn’s Disease and ulcerative colitis while I was there and I also met one of my very best friends in person. I got to come back to New York again and then spend time in New Jersey with “The Fab 5”. My girls who I have met through blogging and who have become some of my closest friends that I consider them my sisters. I got to attend Camp Oasis for my 5th summer as a camp counselor, and it was the best summer there yet! It is hard to see all the good things when I am doing so awful with my health. It is so difficult for me to see the positive things when all I can focus on is what my health is taking away from me.
Today I just wanted to report on all the good things in my life. I know that I have been pretty negative lately and I apologize. I have actually had a pretty good 2 weeks recently in regards to my health. Aside from being extremely exhausted things haven’t been so bad. In 2 weeks I am headed to Wisconsin to volunteer for Get Your Guts in Gear where we will raise money and awareness for Crohn’s disease and ulcerative colitis and I will connect with some of my favorite people.
AND I can finally share this with you
I GOT MY HEALTH INSURANCE BACK!!!! This to me is more than winning the lottery in my life. I cried and for some reason I am still scared to get excited. I feel like I shouldn’t get my hopes up because what if I lose it again. It feels too good to be true!
I love random acts of kindness. The one bestowed upon me has given me some of my positivity back, restored my faith in humanity and the kindness of others, and has made me feel good again. I plan on paying it forward and I really encourage you to do something nice for someone else too. It feels good and you never know, you could change a life!
They’re pretty great aren’t they?
I joke that I don’t have feelings often. At Camp Oasis a few weeks ago it became a running joke with the LIT’s I was in charge of that, “Sara has no feelings!” when really at the end of the week they awarded me with the Big Heart award.
Truth: My lack of feeling scares me. If you know me, or have been reading this blog for any length of time, then you know that I do actually have feelings. I do have a big heart, I care about others often more than I should, and I want to make a difference. But when it comes to myself and my own world I am able to shut myself off in the blink of an eye. I’ve mentioned this a few times before…
I often find myself wondering what is wrong with me. Why I don’t feel more. When I don’t cry at funerals I wonder if I am not feeling enough. When people mention the things that have impacted their lives deeply and I am like “So what, get over it,” I wonder if I am a heartless soul. I know I’m not, but I also know that I have built up walls upon walls. It takes a lot to break me down because since before I can even remember I have had to learn how to keep going. I’ve had to learn how to rely on myself, to compartmentalize, and to just keep on going because if I didn’t I would break and I didn’t have time to break. And who would pick up the pieces anyway?
Yesterday I went walking through my old college campus with a good friend. It is summer (stating the obvious) and the last time I had really been on campus like that was right around this time of year 5 years ago. I call tell you everything about that day down to exactly what I was wearing. Why? Because I had an ostomy the last time I was on that campus…
*Cue harp music and a cloudy fade like we are going back in time and viewing the past life of Sara*
I had finally gotten discharged from the hospital after about 5 weeks there only to be admitted again two days later. But while I was out I decided to do anything that would make me feel like my “old self” again. I was Vice President of a campus organization the year before and my three best friends held the positions of President, Treasurer, and Special Events Planner. During the summer before school starts all the campus organizations, sororities, fraternities, and other groups set up tables around the pond behind the Student Center so that new and old students can check them out and sign up to join. This event is also known as “Fajita Fest” because they serve fajita’s!
(^^ “Fajita Fest”)
This was my first public appearance with an ostomy.
It is interesting when your body changes. It is strange having this new sense of hyper awareness. Everything was different. One of the last times I had been there was in May at the end of the semester. I sat with those same friends around the same pond except I had my colon then. I was on high doses of steroids then. I was taking all sorts of medications that were failing. We sat there eating taco bell (of all things) and we laughed when I found a spider on my pants and shot up in fear, did a silly dance, and then some strange army crawl thing. I was so very sick at that time but had no idea how much my life was about to change.
(Embarrassed to show you this picture but this was that day we sat there on a May night around the pond eating taco bell. I’m puffy from steroids, I’m pale, and I am wearing sweats to hide the weight gain/puffyness. One of the last photo’s I have of me with a colon and oh how different I look!)
And there I was, just months later, with an ostomy. With no colon and a new j-pouch that was healing and waiting to be used after a few months. I remember everything about this day because my brain would not shut off. The whole day was as if my mind and my body were two seperate things. It was a hot summer day and I was so happy to be there with my friends. My hair was thin, my weight very low, and I was so tired. But all I could do was think about how different things were. I didn’t have a colon! No large intestine. These people, aside from my friends, had no idea they were talking to someone missing a large intestine! Such a funny thought to have, but that is all I kept thinking. I was different. They had colons. I sat at our table, I gave out free things, I laughed with friends. I walked around to other tables and collected free things. And then! Then my friends asked me to go get them food. No big deal right? All I had to do was walk around the pond, into the student center, wait in line, and bring them back food. That must have been the longest walk of my life! I wore a plain black tank top, shorts, and black flip flops. My hair (now red) was in a pony tail and I was wearing a scent from Bath & Body Works that to this day I refuse to wear because every time I smell it it takes me right back to the time I had my ostomy and how sick I was.
My ostomy bag was puffy. I had no experience with this and no idea how to even make that stop. The bag was full of air and back then I had no information about ostomies what-so-ever! Not once had I ever met anyone with an ostomy. I had never talked to anyone with IBD in person or online aside from a close friend of mine briefly, and never knew that there were certain cloths and other things for people with ostomies. I hardly even opened my computer that year because I had been so sick. I was all alone in this besides my WOC nurse and as we know nurses and doctors can only tell you so much. All I remember is walking into the Student Center knowing that my bag was full of air and you could tell when you looked at my shirt. I wondered if people knew. Could people see it? Did they know what it was?
That is all I remember about that day and that very night I ended up back in the hospital.
I joke that I don’t have feelings but I know they are there. Being on campus yesterday brought back a lot of memories. I wasn’t sad, I don’t know what I was. Just weird to be there I guess. My last memories of that campus are not good ones.
"That is the building I lived in where I did nothing but go to the bathroom and stare at a toilet full of red".
"That is the bathroom where I ran into after having an accident only to have girls laugh at me in there while I was cleaning myself up in a stall".
"That was the building my tap class was in but I had to quit going because the walk there was too difficult".
"This is the room I lived in during the most agonizing nights of pain".
and on and on and on…
To say that my last hospital visit a month ago was awful would be an understatement. The bedside manner of the surgeon (new surgeon I’ve been seeing for two years but not the one who did my surgery - love him, but he retired) and of the GI team left me feeling lost, scared, not in control of my health, and defeated. Not things a patient should be feeling when working with their medical team.
This isn’t the first time I have had issues with this surgeon. Here’s the thing, underneath his horrible bedside manner I get glimpses of his human side. He’s a smart guy and deep down possibly even a caring person. I don’t know what it is? Years of working in the medical field that has sucked his compassion dry? The first time I saw him was 2 years ago when I switched hospitals. This was back when they still thought I had ulcerative colitis. I was admitted and after being scoped by him he diagnosed me with pouchitis and put me on IV Cipro. I KNEW it wasn’t pouchitis but I played along and went through the course of antibiotics without improvement. For months prior I had been losing weight rapidly even when I ate more calories to compensate and was then so underweight I was concave. I was also in a ton of pain and feeling so fatigued that the last few weeks I spent on the couch hardly able to walk down the hall without holding onto the walls for support. There were no pouchitis symptoms and I just knew I was in a flare-up (of Crohn’s that was about to be diagnosed…). After a few days of laying in bed, still in pain, and still feeling terrible he came in and practically yelled at me. I was unable to eat and still in pain and he told me to “eat a hamburger and get up and walk” because I should be fine.
What he should have said was “when I scoped you it looked like pouchitis so I don’t understand why you are still feeling bad, maybe we should investigate a little further”. Anyway, I communicated to staff that I didn’t want to see him anymore and a few days later I was scoped by my current GI (who was new to me back then) and guess what! I had Crohn’s disease. I was in a pretty bad Crohn’s exacerbation all throughout my j-pouch and as far up as they could see with the scope. And that was when my diagnosis changed from ulcerative colitis to Crohn’s disease. I was put on IV steroids and then remicade and eventually I did feel better. That surgeon did come in to apologize to me for his behavior and asked if we could try again to which I agreed and he got a lot nicer after that.
So this is where it’s been for two years. New GI doctor out of a new hospital and a surgeon who has never operated on me but I have to be admitted under the surgery team as well since I have a j-pouch and since I am often admitted with them thinking I have a blockage or something that requires surgery.
I HATE this new hospital. It’s nothing like my old hospital with it’s private rooms and compassionate nurses. This one is cold, ugly, with shared rooms and nurses who are constantly making mistakes on me. I could deal with that if I thought I had a medical team I could trust but last month when I was there was incredibly angering.
The relationship with your doctor
My GI works out of this hospital yet for the two weeks I was admitted he never once came to see me. NOT ONCE! When I asked about this I was told that they take turns working in the hospital and that I shouldn’t be upset because the GI team was communicating with him. That isn’t the point! He works there!!! His office is IN the hospital. I want to feel like I have a relationship with my doctor. I want to know that he cares about my health. Even if he doesn’t, he should fake it! Take the elevator up 7 floors and come see me because I’m your patient. I was shocked at this. Crohn’s disease is chronic (as we all know) so my future is faced with a lifetime of managing my health. I have chosen him to help me with that and he didn’t even come see me while I was in the hospital? Astounding. All I wanted was a familiar face, not a team of GI doctors that I have never seen before. Not to mention that they were less than pleasant with me. One never introduced himself to me, I never understood who they were, why they were there, they never communicated with me my treatment plan, and I could hardly understand what some were saying. Before this I trusted my GI. I thought I could build a working relationship since he would be heading my care for the next however many years.
Then there is this surgeon I mentioned in the beginning. His bedside manner is horrible. He yelled at me. This isn’t an exaggeration. He yelled at me. Towards the end of my two weeks there after seeing the medical team, the GI team, and the surgery team, all of who didn’t communicate with me much and didn’t seem to communicate with each other at all, I went through days of being told one thing then having the day go completely different. I would be in my room and all of a sudden transport would be coming to get me for a test that I had no idea I was having. It made my anxiety spin out of control. And as a patient in the hospital all you want is any little bit of control you can have so knowing what was in store for me during the day is very important to me. If I am going to be put through a test or procedure or start a new medication then I want to know about it so I am not caught off guard. Tests and procedures already make me anxious because for some reason my body stops feeling like it belongs to me. I don’t know if I can make that make sense but it is what it is. Also, I should be part of the decision making process. It’s MY body and I should be informed of what medications we are going to try and make the decision on whether or not we are going to try them. I went through two weeks of medications being given to me that were never explained to me and two weeks of just chaos.
So at the end of the two weeks I had had enough. I didn’t know why I was still on IV cipro and flagyl. I was given IV erythomycin during the middle of the night and never told it was going to be added to my treatment and was only alerted to it when I woke up to see the nurse hanging the bag while I was sleeping. I had to have EKG’s because the QT levels in my heart got messed up from the medications I was given and I was never told about that until I asked the lady who came in to do my EKG why she was doing it! There were SO MANY things wrong with this hospitalization and I had had enough! So I refused the IV erythomycin because I have had it before and my body didn’t agree to it. IF they just communicated with me that they were going to give it to me I could have told them that. I refused the reglan because again I had been given it YEARS ago and had bad reactions. So my surgeon came into my room and yelled at me. He did! Not kidding. My friend was there to witness it and thank god for her because I can’t imagine being in that room and feeling even more helpless than I already did at that moment. He said something like “what do you want me to do!? Fine, i’ll unhook you from your PICC! Stop the TPN! Stop the medication! You’re refusing the medication I give you and now I find out you couldn’t swallow the barium downstairs!! You just want to go on your vacation so I’ll unhook you from everything but I guarantee you’ll be right back here because you are not able to eat and you’ll get out of here and vomit everything and end up right back here!!” Then he went on to yell at me about how easy it is to swallow 2 cups full of barium. So what did I do? I cried of course. And my friend had to tell him that his way of communicating with me was not acceptable. I then had to explain to him how hard it is to swallow barium when I hadn’t eaten one thing for two weeks, was on TPN, and was there because I was distended and vomiting everything that went into me. So the next day I had to have an NG tube put back into me to pump the barium in.
Why is bedside manner important?
The reason I bring this all up is because I am not doing well. I don’t know if you’ve noticed but I have been lacking on blogs and videos lately. I just don’t want to complain all the time but all I have been feeling lately is down. I have missed a TON of work and that makes me feel like a terrible human being. I have been home in bed for the most part and my pain and naseua are getting worse and worse by the day along with the distention. I *should* go back to the doctor or hospital but now I am left with no trust in my medical team.
That is why it is important that doctors treat you with compassion! I’m left sitting here avoiding calling my GI because my first thought is what will he do anyway? He didn’t even come see me when I was in the hospital and he’s in charge of my treatment. And all I want to do now is avoid being admitted to the hospital because I don’t know if I can go through all of that again. The patients health suffers if the doctors treat them in a way that makes them feel like dirt. I feel like I won’t be listened to. I don’t feel like I have any control. I don’t feel like they are working WITH me. And before you tell me to find a new doctor let me tell you that I don’t have health insurance. So doctor shopping isn’t a possibility. Who knows, maybe they treat me worse because I lost my health insurance? The whole thing is just fucked. Pardon my language. And yes, I will call and get in but I go in already feeling defeated. All I can think is what’s the point?
If a doctor treats you with a bedside manner that makes you feel terrible it has a tremendous effect. Do you think I ever want that surgeon to operate on me? After I’ve been yelled at by him? Do I want to put my life in his hands when he has shown me that side of him? Nope. I want a doctor who appears to care for me. Our GI from Camp Oasis takes his patients and their families out to dinner. He cares! The doctors at camp are not even my doctors but they help me out more at camp than my own doctors do. They seem to care for me! And I therefore am much more open and honest about my health and what is going on. That is another point. A patient will communicate better with their doctor if they trust them. You have to feel like the doctor is listening to you and wants to help. I could go on and on about this forever…
If you have been treated like this by your medical team and you have the option to find a new doctor then find one! That is the advice I would give to anyone and the advice I would take myself if I were able to look for a new doctor currently. No one deserves this and there are better doctors out there who will make living life with a chronic disease easier. You want to trust these people and I think they often forget how important that is. Don’t settle if you don’t have to.
The beginning of my summer sure was depressing. All my plans cancelled due to a hospitalization. Missing out on Florida and GYGIG. I just don’t feel like summer has even begun and it’s almost August! I am really hoping to make up for lost time and get my time in the sun and all I really want is a few days at a pool or lake.
The good news is I got out of the hospital in time for my girls weekend with Marisa, Jaime, Mal, and Beth and that boosted my spirits and I wasn’t in the hospital for Camp Oasis which would have crushed me. Camp was the only time this summer where it has actually felt like summer to me and where I have been completely happy and content.
I can’t even describe that feeling but it is something I wish I had more of. More happiness, less worry.
It is frightening how dependent my body is on remicade and frightening to think about what it would be without it. Frightening that I need it but don’t want it.
Just thoughts. I’m way overdue on my infusion. I was due during Camp Oasis week and then I got back and will finally be getting in this week. Needless to say I’m not doing well. I can put on a smile and grin and bare it but geez.
Yesterday I only ate a rice krispy treat until about 10:30pm when I finally ate and that was it. Pain. Woke up in the middle of the night with a “j-pouch issue” and then went back to bed for some restless sleep until I finally got up at 7am. My stomach has that “bleedy feeling” as I call it. The feeling I had when I had my colon and it was bleeding. It’s the pain that I had back then. The pain that I have come to know when I am in a flare up. The same exact pain I had when they finally discovered I had Crohn’s disease and not ulcerative colitis. My bones ache, I’m exhausted, and yeah…
But remicade soon and hopefully that puts me back together again.