It turns out, that when you get toxic mega colon, and go septic, it can lead to all sorts of other fun problems. It doesn’t just “go away”. You don’t just “get better”. It sucks. I am still dealing with residual GI issues from it all. But, it took a very long time to figure out just how much I had going on and what we were dealing with.
After I came home from the hospital, I was still very sick for a long time. I couldn’t eat, I was in a lot of pain, and I was exhausted. But, well, I was a stay home mom with two young kids. So, there was no such thing as resting. So I carried on the best I could. I learned to just suck it up and keep going. But I was crabby. And started resenting everyone. I felt like no one “GOT IT”…no one understood that just because I wasn’t hooked up to IV’s anymore didn’t mean that I was all better. Just because I found the strength to make dinner, didn’t mean that I wanted to have to push through and find the strength to do the dishes. Or the laundry. Or vacuum. Or anything. It took all I had some days to just get out of bed. Shoot, sometimes it took all I had to just open my eyes! I hurt. ALL. THE. TIME.
I am not talking casual aches and pains. I am talking EXCRUCIATING pain.
I kept going to doctors. I went to my primary care physician, and he gave me the pain meds I desperately needed, and referred me to a GI. I went to the first GI doctor, he heard the word “Salmonella” and cut me off and said, “Well, you have post infectious IBS”. Asshat. So I went to a second GI dr. Again, he heard Salmonella, and dismissed me with, “Well, after what you went through, it will take a while to heal completely.” And a third GI told me that if I wasn’t feeling better in 6 months to come back. SIX MONTHS? I couldn’t live like this for 6 more months!!
But, as it turns out, I lived like that for 5 years. If you can call what I did “living”. I merely existed. I had days that were like an out of body experience…I would be watching myself move wondering how the hell I was doing it.
This is where all my training in wearing a mask came in handy. I would put on my happy face and pretend I was fine, because well, who wants to be around someone that is complaining all the time? And really, it felt like no one cared. No one wanted to hear it. When you ask someone, “How are you?” Do you REALLY want the answer? Or is it just the polite thing to ask? I found out quickly that no one REALLY wanted my answer.
I even had people, friends and family no less, tell me that I was “milking” it. It couldn’t be THAT bad if I could go shopping (umm…we still needed food and clothes right? And since no one offered to go for me…guess I sorta had to go…), I heard, “Well, so-and-so had Salmonella once and they are fine…” *eyeroll*. No one understood that I didn’t JUST have Salmonella. I had gone septic. I had toxic mega colon. I could have died had my husband not forced me to go to the ER.
Finally, after years of constant pain, a friend told me to see her brother in law. Who was a dr. in a neighboring state and was known for being an excelled diagnostician. I KNEW something was wrong. Very wrong. And I was convinced that it was not just a GI issue. So I went to see him. And we decided on a pretty drastic course of action. I was going to go under the knife for an exploratory “pain mapping” surgery. I was put under, I was cut open, and then I was WOKEN UP! And my organs were poked and I would say if it hurt or not. (umm…it DID!) then I was put back under and sewn up.
Turns out…that I had endometriosis, interstitial cystitis, and get this! A prolapsed uterus. However, my uterus didn’t prolapse the usual way. Mine prolapsed because the ligaments at the top of it had stretched to more than twice their normal length. My ginormous, infected, swollen colon had shifted things internally and apparently had decided to push that organ out of the way. Because it was prolapsed from the top, it had been swinging around inside like a pendulum. Hitting and banging into all my internal organs whenever I was sitting or standing, moving, etc. And it had been undiagnosed by so many doctors, scans and ultrasounds because when I would lay down on my back for exams and tests (and the only comfortable position I could ever find to be in) my uterus would flop back into place. Crazy right?
My dr. fixed the prolapse, and removed the endometriosis that he could, at the time of the surgery. And I felt much better for about 6 months.
Then the pain came back. All of it. I was convinced I had prolapsed again. But my dr. told me that he fixed it and it wouldn’t have happened again this soon. He blamed my pain on my interstitial cystitis. Gave me meds for that and sent me on my way. My OB/GYN said that there was no way it had happened again, and sent me on my way. My GI dr was still saying “post infectious IBS” years later. So the depression and frustration came flooding back…full force. Worse than ever. I was feeling defeated. Dismissed. Alone. Suicidal.
I went to my primary care doctor and told him that I wanted to die. I even (seriously!) begged him to put me in a medically induced coma, just so I could have a break from the pain. I then started a wonderful cocktail of 3 anti-depressants (at the same time…hello 50 lb weight gain!). It is that combination and my two beautiful children that kept me alive.
After another year of this…my primary care doctor finally had enough. He became my number one advocate. And he helped me convince an OB/GYN to perform a hysterectomy. No one would do it because I was in my 30’s…and they would say that insurance wouldn’t approve it. I told them I didn’t care. I would pay out of pocket. I just wanted the pain to STOP.
So I had my hysterectomy. 5 years after the Salmonella. 5 years of constant pain (with a nice 6 month break thrown in as a tease). 5 years of my life wasted in misery. I had them take my ovaries too, because of the endometriosis. When I woke up from the surgery, I knew something was wrong. My one incision was burning. A searing, burning pain. The nurse just told me to walk…and gave me pain meds. I went home 36 hours from the time I checked in, and I still knew something was wrong. This wasn’t normal incision pain. I had had surgery before…
So a few days later, I called the surgeon and said that I had to come in, that something was wrong. Thank God my husband brought me in, and I didn’t go alone…I got there and found out that a nerve had been sewn into the incision. It is rare that that happens where my incision was, but well…the salmonella messed everything up, so nothing was where it is supposed to be I guess. So the dr. tried to give me a shot directly into the nerve. She touched me to find the spot and apparently found it because I screamed the most primal scream and started to go into shock. It was horrific. My husband kept screaming at them to stop. To get away from me. So I ended up going home with pain patches and more pain meds, and was told that I would know in another 4-6 weeks if the nerve was trapped in the suture, or the scar tissue. Fingers were crossed it was the suture…so that when it finally dissolved, the nerve would be released. If it was caught in scar tissue, I would have to back under the knife with a plastic surgeon to release it.
So for 6 weeks I waited. I couldn’t drive, I couldn’t walk or sit without pain, and I became more and more depressed. This surgery was supposed to help. It was supposed to make it all better. It wasn’t supposed to cause a NEW pain! I felt so hopeless. Not to mention, I was also in the depths of menopause. The hot flashes were coming so fast and furious that I was getting nauseous. My family was sleeping in fleece pajamas and extra blankets in July because I kept the air conditioning on so high just so I could breathe…it was hell!
Then finally, almost 6 weeks to the day, I woke up in the morning and rolled over to get out of bed and the pain wasn’t there! I twisted myself into positions that would normally send me screaming out in pain, and it didn’t hurt! Holy Shit! The nerve was just in the suture and the suture had finally dissolved. I had never been more relieved about anything. Ever.
Organized Musings of a Chaotic Mind 