So today I went in for my 1 year review for my Ulcerative Colitis/ Inflammatory Bowel Disease. Instead of seeing my wonderful GI doctor I got to see an IBD nurse instead. My nurse was absolutely amazing!
She said I noticed you stopped your chemo (Azathioprine) 3 years ago and I want to know how you are doing. She said we don’t always know what is going to happen to a patient that comes off of this medicine if they will get worse and go back into a flare or not. So she really wanted to make sure I was okay and in remission. And she made sure I had all of the contact information for my team at the hospital in-case I were to get sick so I can call them immediately.
So it was huge that this nurse also calls my Azathioprine medication Chemo. The reason being is that this medication used to be used as a Chemo but now it is found more effective for people with auto-iummune diseases like Crohn’s and Colits and rheumatoid arthritis. It is also used for immunosuppression in organ transplantation. But anytime I have mentioned this drug and called it Chemo like my IBD team does my family and friends they think I am being a drama queen.
So it has been wonderful to know that my team fully understands what I went through on that medication. I had a team of highly educated people tell me about the medication and help me deal with my side effects the best they could. And they also helped me deal with my family and friends who think I am being a drama queen when I suffered so badly from the medication. I know there are plenty of people taking this medication and some of them get the same crap from their family and friends too. So I kind of cut certain people out of my life that didn’t support me and what I was going through.
My husband always says I am too nice to people and I do too much for them. This is true but he is trying to get me to see how little others do for me when I would do absolutely anything for them. I would give them money and not ask for any in return when they needed it. I would buy them gifts just because something made me think of them that I thought they would enjoy. But I rarely every got anything back. Sometimes I wouldn’t even get a thank you. So he has been helping me limit my time with people who don’t go as far as I do. The other bit is he has been helping me keep a distance with people who don’t understand my IBD and the medication and everything that goes along with it. So I have to be thankful for that.
My nurse showed great concern and it was nice to be around someone so understanding and empathetic. I talked about the medication you know the asacol,mesevant, lialda type ones. And how they smell of sulfur is not nice. And how it was hard to take the pills when I was first diagnosed as they were big and I usually didn’t have an appetite so I would get nauseous and throw them up. To now I don’t think they look so big and I have to look at them as my friend and not my enemy. But also about the steroids and immunosuppressants and what they did to me. It felt nice to not feel so judged and to feel understood. Like I didn’t have to pretend to just suck it up and be okay and act like it doesn’t bother me. I could actually be open and honest about it and they understood and didn’t think of me of any less of a person. That is what is truly amazing.
I try to stay away from the support groups now. I used to be really actively involved in them. But now when I go in them it is like the same story over and over. Everyone is made to feel like crap from their family and friends. We have each-other in the community. I have a few people I am in contact with who have the disease.. either Crohn’s or Colitis. And I try to be as understanding as I can with them.
I’ve had to find my own way through managing my disease. When I first got sick I was a senior in HS trying out for my soccer team. I didn’t make the team but the coach was a bully who didn’t even call an ambulance during a bad asthma attack. I had to look up my symptoms on my own. And then a month later I finally went to my mom and explained to her what had been happening. I didn’t want her to be embarrassed of me as she was a nurse. She said if it is UC it is very serious. So we went to the family doctor/GP. They said it might be UC but I need to go to and GI doctor. Well 2 weeks before my GI appointment my mom sadly passed away. So this made it even more rough for me with what I was going through.
I had all of my testing but because of the death of my mom I wasn’t grasping everything. I was sometimes thinking maybe I didn’t have IBD and it would just go away. Even though I read absolutely everything about it. My GI used to clear out a block for me when I would come in. At 18 I was his youngest patient, my mom had just died, I was getting diagnosed with a major disease and he just wanted me to enjoy my senior year of HS. He said I probably should had been admitted but he said a lot of mistakes get maid on the inside of hospitals.. it wasn’t until years later I finally understood all off the mistakes that could happen by hospital staff. I was really alone when I was going through this. I stopped talking to all my friends, my brothers were a few hours away a uni. I had my dad but we got in arguments a lot after my mom died. But my doctor would talk to my dad to explain to him that it is serious and I need my medication as IBD complications can lead to surgery and death.
My doctor eventually told me he thought another doctor and team could help me better than the could help me. He tried everything but because everything I was going through he felt he couldn’t get through to me. The greatest thing he did was hand me off to another IBD team at a specialist hospital. The other hospital was great and they educated me so well. The doctors were so smart and they always answered my questions really well. I was really happy to finally understand what was going on.
Then I had someone ruin my life and I gave up. This person tried to sleep with me and denied it when I told his wife what had happened. He would message me all hours of the night saying really mean stuff to me. He was bullying me a lot. This was before I could block a number on my phone and my brother told me he would not block the number. He said it was my problem whatever I got myself into and I had to deal with it on my own. This same brother that apparently all this time didn’t know I was sick with this disease.
I stopped taking care of myself. I stopped eating, I stopped taking my medicine. I just wanted to be gone from the world and with my mom. I was tired of suffering and feeling so much pain. Well I got sick in a really bad flare and I didn’t tell anyone. I tried to ignore it for a really long time. And I lost a lot of blood. I finally went to my family doctor/ GP and said I didn’t feel good so she ordered blood tests. I started missing university because I was so sick and couldn’t leave my bed because I became so weak. There was one day I had to absolutely be at school and I almost passed out driving on the highway. I went to school, I waited an hour after class to speak to the teacher but another student crying took the time. I went home and I tried to have a bath. I started losing consciousness in the bathtub. The water was going in my mouth and I couldn’t even move. I had no energy to try to not drown. I somehow managed to get the bath plug out and have the water drain. I had almost drowned in my bathtub. I looked at my phone no call and went back to sleep. I woke up with many missed calls from my doctor and voicemails saying I need to go to the hospital ASAP.
My doctor explained to me I needed to go to the hospital for an emergency blood transfusion. This blood transfusion changed my life and has led me to not trust any hospital staff for quite a while! The reception at the ER told me my doctor didn’t call me in that I was coming and told me to take a seat. I waited 4 hours in the waiting room to get seen when I told the reception upon arrival I needed a blood transfusion. I finally went back and a doctor said I don’t look well in passing and I said I needed the blood transfusion. He said the nurse take my temperature which was about 102F. And then I never saw that doctor again he must have been clocking out.
In my ER room I had a nurse who wasn’t too nice. I am sure he was having a day from hell as the ER was swamped that day and night. Well they had to do their own tests on me. And they were like you need a blood transfusion. Well no shit that is why I was there in the first place! This nurse hooked me up and walked out of the room. I started screaming in pain and he didn’t come back. I was having a blood transfusion reaction and he left it going. He did not stop it immediately. He let me have a reaction and went about his day until eventually my brother left the ruin and demanded he see me as something was not right. I am not going to go further with this as remembering all the symptoms is so traumatic for me.
But the thing is I can never get into too much detail when I see my IBD staff here now… years later.. I give the most important details and I don’t go in to explain about it. My current doctor has been really understanding of everything I’ve been through but when he had one of his students see me it wasn’t until then I learned how much he knew and understood. This student had said my doctor explained to him that I was having a really difficult time. And that he hadn’t really seen in other IBD patients what was going on with me. But when this student opened up about what the doctor has said to him about me it really hit me and it helped me to heal. It helped me to feel understood and that I wasn’t talking to a wall. And trust was rebuilt even more that day.
So I can only assume when I saw the IBD nurse today that my doctor met with her and explained some more stuff to her about me and everything that has happened as his name was signed off on things. So having that person that takes a few minutes extra to ask you how you are really doing matters. There is so much healing that goes in with my IBD. But there are so few that actually recognize it. So many of us are around people who don’t understand and are toxic towards us that create a vicious cycle when we are already battling.
I have written about my IBD but not so much on my blog. But I did just want to be open and honest with everyone. My intestines get ulcers in them and it is painful. And we lose blood because an ulcer is an open wound. And when we lose blood our iron counts fall and we become anemic and that makes us tired. There is so much new research finally going on for our disease. Thank goodness for that!
My nurse apologized that she was running late and I said no need. I understand hospitals means waiting and that other people are here because they don’t feel well and need help. And sometimes you can explain something once and they understand and sometimes you have to explain it 500 different ways for them to understand. But you have to get the communication down. You need to find out what is going on with the patient when they come in so you can nip it in the butt! Sometimes patients will say things are okay and they leave and they are not okay. So staff needs to take the extra time with them to dig more information out of them. Getting the patient to feel comfortable to talk then when they feel so embarrassed is very important. You can start treating them right then. But if the correct communication doesn’t happen then you might miss that they are suffering. And it might lead to them not getting proper treatment right away. So they might need more tests, hospital stays, surgeries, etc. So communication is key when seeing your doctor.
I know this drifted from being about my appointment. But not everyone knows my story. So I am happy to share it with you. Getting diagnosed with a major disease when my mom passed away at only 18 was extremely difficult for me. Please try your best to be more understanding about other people and what they are going through. Don’t try to judge them right away and don’t make them feel bad for whatever they are going through if you have never been through it yourself. We are all just trying to get by and nobody here even asked for their life. So please try to be nice and have empathy for others.