I remember the first time I looked down in the toilet bowl – I’m not sure why I bothered to look – and I thought it was undigested tomatoes. I was confused as I had not eaten pasta recently. Why would I have undigested tomato in my poop? It was about twenty years ago, I was out drinking and partying with my friends from uni, and I didn’t give it a second thought. Little knowing it was the beginning of an odyssey that continues.
It was a long time ago – so I can’t recall all of what happened. I know I spoke to my GP, who referred me to various GI’s. They did various tests and found nothing – but the situation deteriorated progressively. Finally they sent me to a GI who was just starting out – and he was apparently the guy that could deal with the tricky ones. The elusive symptoms that evaporated just before the colonoscopy. We tried every test in the book – my favourite was the barium meal thingy. It took months to wash the concrete like poops from the bottom of the toilet bowl – even the cleaning lady could not rid us of their haunting and persistent presence!
Sure enough – he pinned it down – and resolved it was ulcerative colitis. This was my first introduction to Prednisone, enemas and managing symptoms. I was put on Salazopyrine and merrily went on my way for the next ten years, with the odd flare up. I had travelled a lot previously – this was also my introduction to paring down my luggage as I needed half my backpack space for medicine.
Things went horribly awry in about 2000 – 2001. My WBC dropped dramatically, I had started to feel very unwell and looked terrible. A blood test revealed that the Salazopyrine was inhibiting my ability to produce neutrophils, leaving me susceptible to infections. My GI took me off the Salazopyrine – leading to a major flare. He then started the search for a new control medication circus, whilst I saw a haematologist for the neutropenia.
The circus involved the usual merry-go-round of Prednisone et al. We tried Imuran – that resulted in an allergic reaction and a week long stay in hospital. The whole process was complicated by the arrival of a fissure. An agonisingly brutal fissure. Botox for the fissure – failed. The GI started talking stoma. I started crying poor me. Then the CRS mentioned this amazing new drug that had been working wonders – Infliximab. I was willing to try anything. Round one – sitting with the chemo patients on a vinyl recliner – I felt lucky. The fissure was gone the next day. Round two – full remission for the first time ever. New maintenance drug – mesasal started. Life resumed as normal. At this point – the diagnosis switched to Crohn’s.
Treatment plan for the neutropenia was less effective. After five years of random blood tests and GCSF shots – I got a new referral to a new heamo. Whilst I was there – decided to change GI. Best decision I ever made. Cemented when my old GI sat in an appointment and took a private phone call about one of his property investments. I was gobsmacked.
New heamo properly diagnosed the neutropenia, put in place an effective treatment plan and finally I was getting better on that front.
About three years ago I was travelling in Peru when I realised that I could no longer undertake vigorous adventure based travel. I spent the first half of the holiday debilitated and unwell, the second half recovering from being unwell. Recovering in the Amazon jungle mind you. Lol. It was my first real sense of acceptance that Crohn’s does and will limit what I can do. The first time that I finally gave in to the possibility that there were things I wanted to do – but would no longer be able to do. I still refuse to give up on some grand travel plans I have – but I know they will be a little different to how I want them to be.
So I have endured an ulcerated mouth for a few years now – a small price to pay. Then at the end of 2011, things deteriorated dramatically. I forget that we normalise things that are not normal. It is not normal to be delivering a lecture to a room full of students, have a stomach cramp that makes you blanch, call a sudden break time, run to the disabled bathroom (essential for privacy), vomit, then expel whole lot of blood and mucous, then head back to class and resume where you left off. I finally gave in and went to hospital under the instruction of my GI. It was like a holiday! And the specialist GI nurses were amazing.
After a two week stay – it was agreed that I try Infliximab again. It worked so well the last time – it seemed like a great idea at the time. We discussed the possibility of anti-bodies – but focused on the positive potential. Round one went well. Until a week later. Headache …. Sore neck …. Frozen jaw …. Joint pain …. Skin lesions from one end to the other … Then constipation – I could hardly remember what a solid poop was like! Then the inevitable fissure ….
Round Two of the Infliximab. I was hoping it would resolve the fissure – exactly as it had ten years ago. All started out well. One hour into it – started to get shivers. Chatting with the hospital’s head of GI, started getting violent shivers. Nurse enters room – cue convulsions. Violent uncontrollable convulsions. For the first time – I realise Crohn’s will probably kill me. Yet again – it nearly has.
Sedated, I make my way home. More disappointed that my fissure issue has not been resolved. The fissure is so excruciating – I make my way to the GP the next day. It’s too painful for her to look at – she admits me into the hospital. I hadn’t eaten since the day prior – so I get straight into surgery. Even the CRS has no idea what it was. He tells me whilst there is a little fissure there – there was some kind of herniated hemy, or thing unknown to him. But he cleaned it up – this mysterious painful beast – and leaves me to heal. The lady in the bed next door to me is told by her surgeon that her surgery was successful – but unfortunately her stomach and liver are riddled with cancer. I feel quietly grateful for my sore butt – all razorblades and fish-hooks. Morphine doesn’t the sides – but at least I’m cancer free.
The nurses at this hospital are not GI nurses – and it shows. For a reputable hospital with collection of highly regarded CRS’s – I’m surprised. I have to explain what a Sitz Bath is and why I might want one. I have to explain what Prednisone is, complications of Crohn’s, control medications, ask for a bed pan etc … I miss the professionalism of the GI nursing experts at the other hospital. And their kind and gentle understanding.
I finally poop and get sent home. The pain is horrendous – so I choose not to eat. Despite being unwell – I somehow manage to remain chubby – so the fasting for a few days will do me good. I dream of steak and mash. Is every ad on television about food? lol
So now here I am – with a little fissure, sore bum, sooky and a little peckish – recovering from a nameless surgery, wondering which control medication will be my next step. I have been so very lucky with my Crohn’s – it has been so manageable for so long. I was thinking Humira was the inevitable next step – but now I am equivocating. The Salofalk has clearly not worked for some time – but I am thinking a variation on mesesal formulation, topped up with some pentasa enemas. My GI is away until mid Jan – so I have some time to think it over.
It was a long time ago – so I can’t recall all of what happened. I know I spoke to my GP, who referred me to various GI’s. They did various tests and found nothing – but the situation deteriorated progressively. Finally they sent me to a GI who was just starting out – and he was apparently the guy that could deal with the tricky ones. The elusive symptoms that evaporated just before the colonoscopy. We tried every test in the book – my favourite was the barium meal thingy. It took months to wash the concrete like poops from the bottom of the toilet bowl – even the cleaning lady could not rid us of their haunting and persistent presence!
Sure enough – he pinned it down – and resolved it was ulcerative colitis. This was my first introduction to Prednisone, enemas and managing symptoms. I was put on Salazopyrine and merrily went on my way for the next ten years, with the odd flare up. I had travelled a lot previously – this was also my introduction to paring down my luggage as I needed half my backpack space for medicine.
Things went horribly awry in about 2000 – 2001. My WBC dropped dramatically, I had started to feel very unwell and looked terrible. A blood test revealed that the Salazopyrine was inhibiting my ability to produce neutrophils, leaving me susceptible to infections. My GI took me off the Salazopyrine – leading to a major flare. He then started the search for a new control medication circus, whilst I saw a haematologist for the neutropenia.
The circus involved the usual merry-go-round of Prednisone et al. We tried Imuran – that resulted in an allergic reaction and a week long stay in hospital. The whole process was complicated by the arrival of a fissure. An agonisingly brutal fissure. Botox for the fissure – failed. The GI started talking stoma. I started crying poor me. Then the CRS mentioned this amazing new drug that had been working wonders – Infliximab. I was willing to try anything. Round one – sitting with the chemo patients on a vinyl recliner – I felt lucky. The fissure was gone the next day. Round two – full remission for the first time ever. New maintenance drug – mesasal started. Life resumed as normal. At this point – the diagnosis switched to Crohn’s.
Treatment plan for the neutropenia was less effective. After five years of random blood tests and GCSF shots – I got a new referral to a new heamo. Whilst I was there – decided to change GI. Best decision I ever made. Cemented when my old GI sat in an appointment and took a private phone call about one of his property investments. I was gobsmacked.
New heamo properly diagnosed the neutropenia, put in place an effective treatment plan and finally I was getting better on that front.
About three years ago I was travelling in Peru when I realised that I could no longer undertake vigorous adventure based travel. I spent the first half of the holiday debilitated and unwell, the second half recovering from being unwell. Recovering in the Amazon jungle mind you. Lol. It was my first real sense of acceptance that Crohn’s does and will limit what I can do. The first time that I finally gave in to the possibility that there were things I wanted to do – but would no longer be able to do. I still refuse to give up on some grand travel plans I have – but I know they will be a little different to how I want them to be.
So I have endured an ulcerated mouth for a few years now – a small price to pay. Then at the end of 2011, things deteriorated dramatically. I forget that we normalise things that are not normal. It is not normal to be delivering a lecture to a room full of students, have a stomach cramp that makes you blanch, call a sudden break time, run to the disabled bathroom (essential for privacy), vomit, then expel whole lot of blood and mucous, then head back to class and resume where you left off. I finally gave in and went to hospital under the instruction of my GI. It was like a holiday! And the specialist GI nurses were amazing.
After a two week stay – it was agreed that I try Infliximab again. It worked so well the last time – it seemed like a great idea at the time. We discussed the possibility of anti-bodies – but focused on the positive potential. Round one went well. Until a week later. Headache …. Sore neck …. Frozen jaw …. Joint pain …. Skin lesions from one end to the other … Then constipation – I could hardly remember what a solid poop was like! Then the inevitable fissure ….
Round Two of the Infliximab. I was hoping it would resolve the fissure – exactly as it had ten years ago. All started out well. One hour into it – started to get shivers. Chatting with the hospital’s head of GI, started getting violent shivers. Nurse enters room – cue convulsions. Violent uncontrollable convulsions. For the first time – I realise Crohn’s will probably kill me. Yet again – it nearly has.
Sedated, I make my way home. More disappointed that my fissure issue has not been resolved. The fissure is so excruciating – I make my way to the GP the next day. It’s too painful for her to look at – she admits me into the hospital. I hadn’t eaten since the day prior – so I get straight into surgery. Even the CRS has no idea what it was. He tells me whilst there is a little fissure there – there was some kind of herniated hemy, or thing unknown to him. But he cleaned it up – this mysterious painful beast – and leaves me to heal. The lady in the bed next door to me is told by her surgeon that her surgery was successful – but unfortunately her stomach and liver are riddled with cancer. I feel quietly grateful for my sore butt – all razorblades and fish-hooks. Morphine doesn’t the sides – but at least I’m cancer free.
The nurses at this hospital are not GI nurses – and it shows. For a reputable hospital with collection of highly regarded CRS’s – I’m surprised. I have to explain what a Sitz Bath is and why I might want one. I have to explain what Prednisone is, complications of Crohn’s, control medications, ask for a bed pan etc … I miss the professionalism of the GI nursing experts at the other hospital. And their kind and gentle understanding.
I finally poop and get sent home. The pain is horrendous – so I choose not to eat. Despite being unwell – I somehow manage to remain chubby – so the fasting for a few days will do me good. I dream of steak and mash. Is every ad on television about food? lol
So now here I am – with a little fissure, sore bum, sooky and a little peckish – recovering from a nameless surgery, wondering which control medication will be my next step. I have been so very lucky with my Crohn’s – it has been so manageable for so long. I was thinking Humira was the inevitable next step – but now I am equivocating. The Salofalk has clearly not worked for some time – but I am thinking a variation on mesesal formulation, topped up with some pentasa enemas. My GI is away until mid Jan – so I have some time to think it over.
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