I just recently had the 3 step surgeries to remove my colon, create and connect my J-pouch. I have been flaring since March 2018. In April 2018 I went on FMLA until I quit that job in July. In August 2018 I started working again. By that time I was on daily Tylenol because I had a constant higher temperature (sometimes a fever). I had my colectomy in November 2018 with the creation of the stoma. I continued working with the new company as a contractor until they hired me full time in March 2019. They gave me the insurance guide and I was talking with my surgeon about me switching insurances. They told me which insurances he accepts. My new company offered one plan that he accepted. I looked forward to my hiring orientation.

During the hiring orientation, the lady presenting didn't cover the health insurance plan that I needed. I thought she will get to after explaining the other ones but at point I asked her: You don't offer the PPO plan from Cigna? She said no, they no longer offer this. Although it was in the benefits guide of 2019. I left my hiring orientation in tears. I scrambled to find a solution because I was going to have my next surgery one and a half weeks later. I tried calling my surgeon's office, crying, pleading for help. They didn't offer me a solution and just said I needed to pay out of pocket. I called my previous contractor to ensure that I was no longer active with them so I could enroll in COBRA but I still showed active and they kept on telling me to wait until next week. I didn't have that much time as I had my next surgery already scheduled. I didn't want to reschedule because that would have added another 2 months or so of wait time. I also just wanted to be done.

On the evening before my surgery, I went online, like I always did, and logged into my account to check if I could enroll for COBRA. I finally could. On the evening before my surgery! I was relieved but needless to say until then I was super stressed. Sometimes I had to leave to a different room just to cry because I was worried out of my mind.

Surgery time came and my j-pouch was created. My loop ileostomy was created. It starting causing issues as soon as I changed my first bag with the ostomy nurse. A few hours after she left to go home, I started leaking. The other nurses couldn't help much because they didn't specialise in ostomy care. So I scrambled to make my bag stick and to stay clean during the night. I was released home the next day so I never got a chance to see the ostomy nurse. I went home and I was super stressed, again, because I couldn't get my bags to stick. I don't remember exactly if I called someone. I might have, and then forgot completely about it. Either way, one day I received a call from the Ostomy nurse's office to schedule an appointment for me. I didn't expect much because the last ostomy nurse wasn't of great help. But I went anyways. I met with a different nurse and she assured me, that my issue can be fixed. I loved her confidence. She changed the bag with me and gave me a new system to wear. I immediately felt more confident that this appliance would stick and not leak anymore. I came into the office crying and left with a smile.

About eight weeks later, my next surgery rolled around. This surgery was the easiest to perform but the most emotional for me. I woke up and the first thing I said (in English, thankfully. At other times I have spoken German and nobody knew what I was saying) was: "I'm in pain". They gave me one pain med after another. Why I was in so much pain, I don't know. I also awoke with a bandage on my belly. When we first openend it, a big gaping and bloody hole appeared. I'm very squeamish when it comes to that part of my body. I had slapped the hands of the ostomy nurses away and changed my very first bag myself under their supervision because I was just too ticklish to be touched there. Now my surgeon needed to access my wound. I didn't realize it but I also slapped his hand away, in a reflex. He immediately said that we talked aboutthis and I cannot do that. I apologized right away and I kept my hands away already but he kept berating me while I already stopped. I didn't understand. I had stopped, why did he keep berating me? Anyways, he continued what he was doing. He packed my wound and put a new bandage over it. They have given me oxycodone the entire time to keep the pain minimal. That evening however I was sitting on my bed and crying in pain. Thankfully my nurse was right there and she told me, she would give me an extra 5 mg of oxycodone, so 10 mg total to curb the pain. Said, done.

The next morning, I was walking the floor and I randomly looked down when I suddenly noticed a spot of blood on my garment. I came across a random nurse on the floor, I stopped her and said with fear: I need help. She sat me down in my room and we put another bandage over the existing one. Later that day, my main surgeon and the surgeon's helper? came in to dress my wound. He looked very serious. The "helper" (I know she's a surgeon too) actually stayed a little longer and agreed to take pictures with us and she joked with me and my husband. She made me feel welcome. She even said "it's good to see you back", left the room, came back in and and corrected herself: "What I mean is, it's good to take care of you!", smiled and closed the door again.

The day came when I was released. Right after I was released, my husband needed to run some errands. Silly me forgot my pain medications. Or maybe I was uncomfortable being out in public with a bunch of opiod pills during a opiod crisis (it's huge in my state and there are bill boards everywhere). Well, I ended up being 2 hours late for my next scheduled pain pill. I was on 5 mg oxycodone. As soon as I got home the pain had already built up. I took my 5 mg. The pain didn't get better as it had already built up a lot. My husband left the house again to finish the errands he couldn't finish because he had to take me home. I was alone and in more and more pain. I started crying in pain and I just couldn't stop. My husband came back home and was surprised to find me this way. I couldn't even speak, there was so much pain. Mind you, two days ago I had a surgery. I texted him on Whatsapp and told him which number to call and ask if I could take an extra 5 mg oxycodone. I wanted to do the right thing and while I was in the hospital, they allowed this.

So he leaves the room I was in, closes the door and calls the surgeon's office and speaks with the doctor on call. She kept insisting that I needed to go to the emergency room. I started coming into the room, trying to explain to her that I have my pills here and I just wanted to ensure if it was OK to take one extra pill. At one point (which I do not remember but my husband told me later) I asked her: Are you a surgeon or a nuse? She felt very offended. In the end, she allowed me to take my extra 5 mg of oxycodone. We ended the phone call. Yes I was still crying because I was in pain. 

My follow-up appointment comes around. I see my surgeon and I noticed the otherwise caring and joking doctor has a serious face again. I already felt bad because I never meant to disrespect him and somehow my gut (haha) was telling me, that he doesn't like me anymore. But I didn't know why.

He starts my appointment by telling me that we need to set boundaries. He retells the story when I called the doctor on call and I was very disrespectful to her and that wasn't the only occasion. But he didn't mention to me which other occasion there was. The only other time, which comes to my mind, was, when I called for help during my insurance problems. Anyways, I kept apologizing under tears. But he said: You can't keep apologizing and misbehaving like this. He handed me a letter of termination. I had messed up.

Now that my surgeon fired me, I have no one to follow-up with. I just had the most stressful time in my life and now that I'm "better" I'm not. I don't eat because I'm scared I might get an obstruction. I keep losing weight. I have inflammation in my mouth and other body parts with mucosa. My joints hurt every day and started swelling. I can't sit without pain. I'm on daily Tylenol again because I have an elevated temperature every day. I'm having the hardest time keeping myself hydrated. I know I need to be seen by someone, maybe get IV fluids and get my joints checked out. Now that I messed up I believe that I don't deserve a doctor's care anymore. I know in my heart, I never meant to disrespect anybody. I made it a rule for myself to never, ever make a phone call while I'm crying because that's misunderstood as yelling at someone (even though I feel I'm not yelling because in my opinion I sound much differerent when I yell at someone out of anger). It all comes back to me thinking I'm in the autism spectrum and I cannot help but behave this way. In my opinion, I was looking for help. But my surgeon will not take me back and he's in the superior position. He doesn't need me. I don't need to mention that this has taken a toll on my mental health as well. I'm in a full blown depression again with thoughts that are forbidden to be mentioned here, even though I'm on medication. 

I don't know how I would react now given the same situation. I was very stressed and I cry easily. And I needed to ask for help from other people. This exact same scenario would have played out exactly the same way as it has if it was to reoccur today. I really messed up. Even though I'm very ashamed to talk to anyone about this, I'm humble enough to admit my mistake and now even post this publicly. I'm not a very good person and I no longer deserve a doctor's care. That's ironic in a way because 17 years ago, I started getting very sick with colitis which wasn't diagnosed yet. I was already a depressed person and I felt I wasn't worth care. I did not go to the doctor and just endured my bloody diarrhea that I already had at that time. Someone then urged me to go to a doctor to get it checked out and it was only then that I went. I would have went undiagnosed the entire time because I felt I didn't deserve care. And here I am, feeling the same way again but this time, I really messed up.

Original Post

Sorry you are having such a difficult journey. First, no need to keep blaming yourself for not being a perfect patient. Many of us has been there, crying and blubbering because of the pain and stress of it all. It happens.

But, you need follow up care. You can call your surgeon’s office for a referral. If that fails, call your gastroenterologist or primary MD and explain your current issues (in concise terms). They don’t need the whole drama. If asked what happened with your surgeon, you can just say it did not work out with him and you could not stay with him. Also ask your primary doc about some treatment for depression/anxiety. It is not uncommon after prolonged illness. Feeling like a raw nerve all the time does not help you heal. 

Try not to be too hard on yourself.

Jan

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