# Um - no - it wasn't undigested tomatoes ...



## Samboi (Jan 2, 2012)

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.


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## Susan2 (Jan 2, 2012)

What a long and difficult journey you have had! I hope that you are able to find the right medication to stabilize your Crohns. :hug:

My worst toilet bowl experience involved mulberries. My parents had a tree of large, luscious, ripe mulberries and, even though I knew I was heading for disaster, I stood under the tree and gorged on them. Later that day I had to go to the toilet at the picture theatre complex and, of course, ended up with a toilet bowl full of floating fruit. I had to stay in the cubicle flushing, flushing, flushing... until everyone else had gone and I could run away, still with some lone berries floating there. :shifty::ybiggrin:


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## Samboi (Jan 2, 2012)

OMG - that has made me laugh and laugh! 
Thanks for brightening my evening.


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## Angrybird (Jan 2, 2012)

Hi there and welcome :bigwave:  That is a lot to go through and I will keep my fingers crossed that a working treatment plan is sorted for you.  Have a look at the treatment forum as this will hopefully help you decide what direction you would like to take and discuss with you doc.


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## Samboi (Jan 2, 2012)

Thanks Angrybird. 
I've had a look through the treatment forum - and that has already helped me decide to hold off on Humira. I'm concerned there is no next step afterwards. And I am very concerned about the side effects. 
I feel like I have had a great deal of luck and good fortune with my Crohns - I don't want to make the wrong decision for me right now. To make it through 20 years without major surgery - I feel very blessed. I should also thank others for very generously sharing their experiences - it is much appreciated.


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## Astra (Jan 2, 2012)

Hiya Samboi
and welcome

Poor you, what a rough trot you've had!
Are you in the UK, only asking cos we say Infliximab, and it's Remicade in the US.
Hoping time will help you to make that decision of where to go next, enjoy the forum!
Lotsa luv
Joan xxx


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## Samboi (Jan 2, 2012)

Hi Astra/Joan

I'm Australian.
Quietly grateful for socialized medicine and the Pharmacuetical Benefit Scheme (PBS) - without which - none of these drugs or medical specialists would be available to me. 
I'm in the private system here - which helps. But still - thank god me and my wonky bowel were born here!!


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## Susan2 (Jan 2, 2012)

If you eventually have to have a colostomy or ileostomy (although I hope that you never get bad enough to need that) you will have another reason to be quietly grateful for the Australian health system. :thumright:


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## vickyhunter (Jan 2, 2012)

I've been on Humira for just over a month and so far so good it's been brilliant!
I hope you get better soon and find a medicine that works for you
xxxxxxx


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## David (Jan 2, 2012)

Hi Samboi and welcome! First off, thank you for your enjoyable writing style.  While I feel your pain, you're a very entertaining writer.  Please take that the right way as I know this isn't a fun subject to write about.  You simply had me enthralled.  Ok, let's talk.

1.  Salazopyrine (Sulfasalazine) inhibits absorption of folate and folate is supposed to be prescribed alongside it.  That, and/or vitamin B12 deficiency (also VERY common in people with Crohn's Disease) is where your neutropenia is very likely coming from.  I hope they figured that out and have your levels being regularly checked and supplemented?  Oh, you know those mouth ulcers you have?  Same cause.  A quality B complex vitamin should clear those up.

2.  I'm not familiar with "mesesal formulation", what is that?  

3.  There's plenty of other treatment options left, don't worry   You're going to do great and we're here for you anytime.


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## Samboi (Jan 2, 2012)

Thanks David. My sense of humor is firmly intact!! 
I was referring to mesalazine. I'm kinda hoping a slight variation might do the trick. Having a medication in tablet form gives me more freedom - and I am pretty reluctant to give this up. When I took the GCSF for the neutropenia - it was very limiting and people asked questions. I only share being unwell with a few people as I don't want to be limited by it. Dragging around syringes that need to be refrigerated really impacted on that. Although realistically - at some point - I know I have to give in on a range of fronts. 

I'll bloody well keep fighting it though!!!! Lol


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## David (Jan 2, 2012)

And I love your humor 

I'm familiar with GCSF but am curious what you mean by "very limiting".  Have you been tested for various B vitamin deficiencies such as folate (also known as B9) and B12 or are they just masking things with the GCSF?

Given the choice, I would take mesalazine over sulfasalazine but it's still going to inhibit your folate and you need to have your levels monitored.


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## Samboi (Jan 2, 2012)

I travel a lot. I've had to limit some places I visit to two weeks as I was realistically not able to take some of my medicine. Fortunately the neutropenia finally subsided about two years ago - so no more GCSF. 
To be honest - I feel very lucky about how my Crohns has progressed. My only major hassle has been when the control meds stop working and I have to go through the trial and error process of determining a new one. The near death experiences just make me strive for more when I am well (which usually means I over do it - resulting in a flare!) this disease has a certain gift for irony!! Lol


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