Health Update: July 17th 2023

This is going to be a bit of a different type of post. I have not posted anything the past three Mondays. Which is the first time I have missed any scheduled posts since I started this blog last November.

The truth is that I have been very unwell. These past three weeks have been extremely difficult. And it is not over yet.

So instead of sharing advice or research. This week I am going to share health update what has happened to me over the past three weeks.

As many of you know, I had a stage 5 complex fistula that was healed last October 2022. Since then I have had an overwhelming fear that I will get another fistula. I have constant intrusive thoughts, and feelings about it. I am sure I have PTSD from the whole experience. And have some trauma from the amount of pain and suffering I went through.

I have also been in a constant IBD flare since September 2021. It is July 13th 2023, when I am writing this. So nearly two years of being unwell. And months of constant fistula fear.

Two months ago I got an MRI. The results showed that I had a small branch of a fistula, but no connection to my colon was seen. I immediately called Dr Porwal from Healing Hands Clinic, in India and shared my results. I was obviously very upset and emotional over the results.

He assured me that this was most likely not a new fistula. But scar tissue from the previous fistula which had not fully healed yet. He calmed my fears, and made me feel a lot better. I decided to believe what he said to me, because I wanted it to be true. And I had no leaking or visible mark outside of my body.

Then a few weeks later, my bum hole itself started to leak. It began as just a small amount of greenish pus. But over time the leakage became more, and there was often blood mixed in. Google and Dr Porwal told me this is just a sign of inflammation along my GI tract from being in a flare for so long.

I began placing a cotton pad over my bum hole to catch the liquid, and tried to just go on living my life. But I was on edge.

Then in early June, I started to feel a familiar discomfort. A small area inside my left bum cheek did not feel right. I tried to ignore it for a few days. Hoping it was a bruise, or ingrown hair. But the discomfort persisted, and then got worse.

Soon there was no denying that I had another abscess. I knew that I needed to act quickly. I visited my local emergency department. The doctors there confirmed that it was the beginning of an abscess.

Due to my medical history, recent MRI results, and constant fears. I immediately assumed that I had another fistula. It is difficult not to assume that what has happened in the past, will happen again. (Even though I learnt in therapy that that is not always the case).

I contacted Healing Hands Clinic and Dr. Porwal, who supported me coming back to Pune, India. He advised that the sooner I traveled to India, the better my outcome would be. Within the course of seven days Ron and I made the arrangements necessary to go back to India. Our old visas were still valid for another 3 weeks. I told my job the unfortunate news. And they were, again, surprisingly supportive. I got unpaid leave until I would return.

I broke the news to family and friends that I had another IBD complication, and my plans to travel. Everyone was sad, but supportive.

By this point my mental health was a mess. In some ways I began to shut down.  Everything was just so difficult.  I relied heavily on my ever supportive and amazing partner Ron.

Ron and I flew to India on a Sunday at the beginning of July 2023. The trip there was painful. Luckily Ron had the forethought to encourage me to get codeine painkillers. Which I had to source from multiple doctors in Australia before we left.

I experienced a lot of pain during this trip. Sitting was difficult, wearing pants was difficult. And unfortunately those are both pretty big parts of plane travel.

By Monday we were in a taxi driving the four hours from Mumbai to Pune, where Healing Hands Clinic is located.

In the car I became increasingly nauseous. I have never been car sick before so this was odd. At one point I had to grab my lunch box and vomit into it.

When we pulled over for a bathroom break. I realized that my cotton pad, underwear, and even jeans were completely soaked through. It looked as if I had peed myself. Instead, I discovered that my abscess had burst.

When we arrived at our Airbnb there was a visible hole where the abscess had been pushing through my skin. I now thought the fistula tract was ‘complete.’ I had a hole from my colon to the outside of my body. AGAIN. Devastating.  I was a mess.

Tuesday I went to Healing Hands Clinic and had surgery. I was full of mixed emotions. Relief to be at the clinic, and devastated that I was back at the clinic.

After the surgery, I was blown away to learn my results.

I did NOT have a fistula, just an abscess cavity. They had removed the abscess, and I now had a large wound. I was told my recovery time would only be 2-4 weeks. Compared to the 11 weeks it took me to recover from the fistula surgery this was amazing news.

I was elated. And still in disbelief. It almost seemed too good to be true. This was like the best case scenario.

I was severely weakened already from weeks of being unwell from the abscess. My calorie intake had dropped significantly, and I had already lost some weight.

Then Ron started to develop a cough. Then he tested positive for COVID. I was testing negative. He separated himself to one half of our small apartment, and we both wore masks.

My condition also started to deteriorate. I could not eat anything at all. I felt extremely nauseous. I was pooping 10+ times per day. And then I began to vomit. The vomiting got consistently worse.

Ron and I knew we needed to do something about my deteriorating situation. We wanted me to start prednisolone. Which is not a decision I take lightly, but I was feeling desperate. I hadn’t eaten anything at all in about 6 days.

But prednisolone is a steroid and immune suppressant. I could not risk getting COVID. As I would be much more likely to experience serious complications.

We made the difficult decision for Ron to move to another apartment for seven days. I began the steroids.

My condition did not improve. I spent the next 4 days completely bedridden. Not eating a single thing. And vomiting after even small sips of water. I felt like I was dying.  I spent my days lying in bed staring at the wall.  I was too weak to even hold my phone up.

I knew that the type of antibiotic I had to take during the surgery would stun my helminths. So I assumed that my IBD symptoms were at an all time high, and that’s why I was so unwell.

Eventually I began to think something else was at play as well. I had never been this sick before. And I certainly had never consistently vomited from small sips of water before.

I became emancipated looking. And too weak and depressed to even go to the bathroom. I felt like I was lying in bed waiting to die. But too weak and sick to do anything about it.

I had been in constant contact with one of the surgeons at Healing Hands Clinic, via Whatsapp. She knew of my deteriorating condition. When I told her I was worried I was becoming extremely dehydrated. She instructed me to come into the clinic straight away.

I was there within 2 hours. They decided that I needed IV hydration, as well as TPN.

The first issue was that due to my extreme dehydration, all of my veins had collapsed and they could not attach an IV.

After many failed attempts (each more traumatic than the last). They called in the IV specialist, and with her help and a team of nurses they finally got an IV in.

I was given anti nausea medication, and TPN via my vein. I stayed in the clinic for two nights.

By the second night my vein was so sore, and was no longer recovering from a few hours off of the TPN.

Due to the pain, I refused more TPN. It was too much for me to handle. And the nurses agreed. My arm was so sore I could not bend it beyond 90 degrees.

The anti nausea meds had really helped, and my vomiting had decreased a lot. I still couldn’t eat any food, but I had received some nutrition from the TPN. And I was cautiously drinking small sips of water.

The doctors and nurses agreed that this was likely something other than IBD symptoms.  They thought it might be a result of the IV antibiotics I had to take during the surgery.  While I thought it might be some local bug.  In both cases I would just have to wait it out, and manage the best I could.

I have a lot of food fear, and did not feel comfortable eating hospital food that I did not prepare myself. So I asked to be discharged.

I spent the first night back at the Air BNB on my own. I tried to eat my first meal in India, and had some success. Although I was pooping and gagging by 9pm. I was able to drink water. Which was a huge improvement.

The next day Ron joined me back at our apartment. I really began to feel better. The second day out of hospital I was able to eat a smoothie, some chicken and carrots, and a banana with almond butter. This felt like a huge win.

That day I pooped 4 times, and vomited once. A pretty big improvement from a few days previous.

 

Anyways, that is my current health update.  Still not feeling good, but feeling better than the previous day. I am still scared to eat much, but just trying to focus on eating more than the previous day.

I am hopeful that in a few weeks, I can travel back to Australia. My abscess will be completely healed. And I can reinoculate my helminths.

I am beginning to feel hopeful that I will feel well again.