So, following my colonoscopy, and the rather alarming realisation that the pain and discomfort I've been feeling, was not just me looking for sympathy, I had a brief discussion with my IBD specialist nurse.
I have had the option of support from an IBD nurse since diagnosis in 2003. In this time I have spoken to a nurse over the phone just twice. I have never really thought about using them as a point of call really, but I think from now on I may talk to them on the phone more often now. When I'm in need of advice or help and a consultants appointment is too far away I think they must be a very useful resource.
Immediately after my colonscopy, my GI consultant was not readily available - he had more colonoscopies to get through, and was due to be on holiday for two weeks after that day. In steps the IBD nurse, who was available to interpret the initial report following the examination. She explained that the stricture was inflammatory, rather than fibrous. This was good news, or at least better news than I had hoped. The fact that the narrow part was narrow because of an area of inflammation, rather than fibrous scar tissue meant that it could be treated with drugs rather than surgery. We could get the inflammation down, and if necessary the stricture can be dialated, rather than cut out. This was all good news, but then all of a sudden she started to talk about the treatment that the consultant was suggesting. A group of drugs called biologics. Remicade also known as infliximab. I had heard the name, but didn't know how it worked. She explained that people with crohn's seem to produce far more of an antibody called TNF. The remicade, removes the excess TNF and was therefore known as an anti-TNF. This makes it an immuno-suppressant. In my head this started to sound rather heavy, considering I only had mild crohn's (or do I?).
The nurse then went on to explain that the drug is adminsistered intravenously at the hospital. At this point I started to wonder if I was actually really unwell, and I just hadn't realised it. I asked if it could not be done at a hospital more local to me, or at my doctors surgery, because this particular hospital was an hour and half's drive away. At this point she explained it had to be done at this hospital as it needs to be administered by specialist nurses/doctors, but there was an alternative. The other Anti-TNF drug of choice is Humira, which works in the same way, except it is administered as an injection, which I can do myself. She sent me away to think about the two drugs, with information about each.
As both drugs are immunosupressants, I need to have some blood tests and a chest x-ray looking for TB. Before I can start treatment we need to be sure I have no existing infections. I have an MRI scan of the small bowel next week, and the blood tests and x-ray have been booked in for the same day, which is handy.
So here I am left wondering why I have to have the "big guns" in terms of crohn's treatment. I poured over the results of the colonoscopy. The consultant had rated my condition as "moderate". This was a little disappointing as it seems to have moved from mild-moderate to simply moderate. It is not however, "severe". I have looked at forums and other blogs, and then realised on my results the consultant has written "suggest top-down". I thought this was referring to an examination of the top of the bowel. Now I realise this is the suggested approach to my treatment. The top down approach appears to be the reverse of how crohn's has been traditionally treated. My treatment has always been - use the weaker drugs, such as mesalazine and if need be a dose of corticosteroids. Now the approach is to bring out the big guns such as biologics early on in order to give a better chance of putting the disease into remission. I guess this can only really be a good thing.
For now, I am on no treatment at all. I asked if I should continue taking the pentasa (mesalazine) until we get the anti-TNF sorted out and the nurse said she didn't see any point, as from the colonoscopy it didn't look like they were doing any good. She advised that I remain on a low residue diet and maybe take some mild laxatives (laculose) to help with transit through the stricture. I thought that she was wrong about the pentasa and that it was helping, but I did stop taking it a week ago and have remained on a fairly strict low residue diet. I have felt very little pain or discomfort, so it appears that she was indeed right!
So my next blogs are going to be on my readings and thoughts around my choice of Humira or Infliximab, and how I am sticking to such a restrictive diet as low residue. If anybody has any thoughts or suggestions around Infliximab and Humira, and Low Residue Diets, feel free to comment.
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