MRI scan of the small bowel

Today was the day of my MRI scan of the small bowel.  I wasn't overly worried or anxious about it as I figured it wouldn't be as bad as a barium follow through x-ray, which is the way this area of the bowel used to be examined.  I didn't remember having a particular problem with the follow through so I concluded the MRI would be a walk in the park.  How wrong was I?

First up I had to drink a litre of a fluid called Mannitol. I wasn't allowed to eat or drink for 6 hours before, and my appointment was mid morning.  As I had been asleep all night, I actually hadn't had a drink for about 13 hours. At first I was glad of a drink - any drink.  It looked like water and tasted sweet with a slightly salty hint in the background.  The first cup was fine.  Then I started to feel a little nautious and strangely bloated. The rest of the drink was a struggle.  I started to feel a little pain in my upper abdomen, I'm guessing because the Mannitol was supposed to open up the bowel a little so that it could be viewed.

Before long it was time for the scan.  I had a cannula inserted into my arm, so that an IV of buscopan - a muscle relaxant could be administered, and later, a dye used to show up the blood in my body.

First of all I was laid down on the bed in front of the scanner, and then I was strapped to it with some cushion, padding type stuff over my front. I was given headphones that served both as ear defenders from the noise of the scanner, and as communication between me and the radiographer in the next room.  I had a series of scans taken like this.  I was asked to breathe in, breathe out a little and then hold my breath.  Sounds easy huh?  Not so easy when the breath hold was nearly 30 seconds long, and I currently have a heavy cold with a cough.  The first go at this was wasted as I had to breathe.  The breath holding was to keep everything as still as possible so that clear scans can be taken, without blurring.

Once I knew just how long I was expected to hold my breath, I was a little better at it.  After 10 mins of this I received the buscopan and the dye IV. I didn't particularly feel any of this, and no side effects of blurred vision.  Then it was back into the scan, for more of the same thing.

I don't suffer from claustrophobia, so the closeness of the tunnel wasn't a problem and being able to lie still and quiet when you are mother of two small children was something of a novelty.  The noise was quite surprising. A series of loud beeps and hums, and at one point hard vibrations that shook the table I was on!

In the second half, I desperately needed to cough, and the more I tried not to, the worse it got. I found myself swallowing to try to stop it, which wouldn't be very good as this would be moving the bowel.  The more I tried to stop, the more little involuntary spasms in my abdomen occurred.  In the end I had to ask them to pause while I gave a good cough! This wasn't just in my head because I knew I shouldn't.  I really do have a nasty cough at the moment!

Finally the scanning was over, and once I had got changed out of my gown and sat quietly for 10 minutes, I could go.

"All over" I thought.  Again, how wrong was I!  Almost immediately the muscle relaxant started to take effect on my bowels, and I have been running to the toilet for the last six hours.  I think it has finally stopped.  I have felt very bloated, sore and distended all afternoon.  I have also finally succumbed to the cold/flu I've been fighting for the past couple of days.  The rest of my family have had it - My Mum, Dad, and two daughters, and I knew it was a matter of time with me.  I've been coping with the shivers as well as diarrhoea all afternoon, and quite frankly I feel rotten!

Still, that's it for a while anyway.  I have now had the whole of my gut examined and I should have the results of the MRI in a week or two.  I also had the blood tests and chest x-ray done today that are required before I begin taking biologics.  I should get the results of these in a week and as long as they are all clear and my immune system is ok, then I will begin with the Humira injections.

In some ways it doesn't matter what the results of the MRI are.  Whether there is a lot of active disease in the small intestine, or no disease, I will still be on the Humira.

I'm not sure how I feel about the thought of beginning the biologics .  At the moment, all I want to do is get over the cold, and start pushing this gremlin back into remission!

Making a Low Residue Diet Interesting (Including lovely recipe) ...

I have found it very difficult to do anything but follow a low residue diet, pretty much since Christmas now.  I have found it very dull and frustrating as I love food.  I love all types of flavours and textures, and when I am not having a flare up I eat an extremely varied diet.

The reason I've been following a low residue diet is because any time I eat any roughage, I find myself in a lot of pain, with a very distended gut. I have been doing this off my own back, and it wasn't until last week that the IBD specialist nurse actually advised I continue with a low residue diet.  Now that I know it could be several months or more that I am unable to tolerate many vegetables, grains, nuts, and seeds, I have been putting a lot of effort into my daily meals. Eating nothing but white bread, white rice, white pasta and chicken very quickly gets rather boring.

So what is a low residue diet? It is anything that passes through the gut without leaving very much residue, and therefore needs little effort with regards to bowel movement.  I downloaded a diet sheet from South Devon NHS trust, and this together with a few searches on the web, and my own experience has given me a diet of the following:

Carbohydrate:

Choose:
White Rice
White Flour (bread, pasta, noodles)
Potatoes without skin

Avoid
Brown Rice
Wholemeal bread, pasta, malted bread, granary bread
Potatoes with skin

Protein

All red meat
Chicken
White fish
Cheese
Eggs
Keep processed pork to a minimum


Vegetables (two small portions a day)

Choose:  ( peeled and well cooked)
Carrots, Swede, Parsnips
Squash, Courgette, Marrow - without skin or seeds
Broccoli without stalks
Spinach leaves without stalks
Tomato without skin or seeds

Avoid:
Onion, Celery, Garlic
Chilli
Cabbage
Sweetcorn
Pulses - peas, beans, lentils

Fruit

Choose:
Ripe Bananas
Tinned Fruit, except pineapple
All fruit, cooked without skins or seeds

Avoid
Unripe Bananas
Pineapple
Raw fruit with skins and seeds


Out of all of this, the thing I am struggling with most is not being able to use onion, celery or garlic.  However, this weekend, with a little effort I have managed to produce some good meals, and I haven't felt that I've missed out when sat around with the rest of the family.  My biggest success was my "Low Residue Lasagne" (See below). With this I was able to feed the rest of the family the same thing as myself without worrying as to whether they had received a healthy and balanced diet.


Low Residue Lasagne

Ingredients:

For the Ragu:
8oz Ground Beef
2  8oz tins chopped tomatoes, seived to remove chunky fibres and seeds (or two tins passata)
1 Aubergine, skinned and chopped
4 mushrooms, skinned and chopped
1 courgette, skinned and deseeded
6 sheets white egg lasagne
1/2 teaspoon garlic salt
1 teaspoon Oregano
1 teaspoon Basil

For the white sauce:
1/2 pint milk
1 tablespoon flour
1oz  butter
Parmesan cheese to taste

Method:

Sautee the aubergine, courgette and mushrooms for 10 mins, so that they are soft, then add the beef and brown.  Pour in the seived tomatoes, and season with herbs and a good amount of freshly milled pepper.  Add the tomato puree, cover and simmer for 20 minutes.  Meanwhile make the white sauce:

Melt the butter in a saucepan and add the flour, cook for 1min and gradually add the milk, stirring to incorporate it into the flour before each addition.  Cook for 1 - 2 minutes until sauce is thick and creamy. Stir in grated parmesan to taste.

Layer up the ragu and lasagne sheets in an ovenproof dish. Pour the white sauce over the top and grate cheese over.

Bake in a hot oven for 45 minutes until the cheese on top has melted and is bubbling and golden brown.

I served this with warm, crusty white rolls from the oven.  I gave the rest of the family a portion of sweetcorn which obviously isn't low residue so I didn't serve myself this  As I had two portions of low residue vegetables in the Lasagne, I did not have a vegetable side dish.

It was delicious, and the rest of the family obviously thought so too.  Best of all, there was no painful cramping or distention in the days that followed!

Advice from all sides

I got a phone call from my GP today.  He was asking gor an update on how I got on at my endoscopy.  It appears he has received a report on the gastroscopy, but not necessarily the colonoscopy.  After I got the impression that my oesophagus down to the top of my small intestine was clear, it seems that the report he received says that there was some inflammation.  He read it out to me, and whilst I can't remember the exact phrase, words such as erythema, and duodenitis were in amongst it.  He interepreted it as an inflamed duodenum.

He asked whether I had been put on any medication, and I explained that biologics had been suggested, but I was to have the MRI, blood tests and a chest x-ray next week.  He wondered whether the inflammation in the duodenum might be a side effect of the pentasa, and has given me a prescription for omeprazole as some "protection" for my stomach.  He has tasked me with enquiring with my consultant as to whether this is a sensible course of action, and if he might think that the inflammation in my duodenum could be due to the pentasa.

I am quite pleased that my GP is still taking an interest in my health, and wants to ensure he understands the results of examinations.  I am also pleased that he has passed on the results of the gastroscopy to me, as I was under the impression that everything was normal in this part of my digestive tract, when it obviously isn't.  I have to admit though, I am a little concerned at this stage that I might begin to feel like I'm being pushed and shoved in all directions between IBD nurse, consultant and GP.  I guess I'm not really used to having worthwhile support from medical professionals.  Up until now, I have pretty much felt like anybody I have seen, (except for the dermatologist who dealth with my Pyoderma Gangrenosum - who was exceptional)  couldn't wait to get me out of their consulting room as they had rather a lot of other patients to deal with thank you very much!

I am beginnning now, to see just why the consultant is considering taking a "top-down" approach to my treatment.  If there is inflammation in my duodenum, then I no longer simply have Colonic crohn's, it is quite possibly all the way through my digestive tract.  The MRI scan should be able to tell if this is the case.

I think possibly, I have little choice but to begin ant-TNF drugs if I am to push this baby back into remission.  As to whether I choose Humira or Remicade, I'm think it doesn't really matter.  If I am able to take Humira and there are no ill effects, then this may be the most practical for me.  Injecting myself, although it may take a bit of getting used to, is preferable to having to keep taking half days off of work in order to go to the hospital for an infusion.

A stricture, humira/infliximab and the top down approach

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.

A stricture it is then!

So, it seems to be a running theme that whenever I go for a signigicant examination, my worst fears are realised!  Well, to be honest, that is a slight over exaggeration there.  My fear was that they would find a stricure, but my biggest concern was that the only releif would be surgery.  Thankfully, at this point this is not the option.

My "bowel cleansing" was not nearly as terrible as I remember is being the last time.  My herbal laxative I took first seemed very gentle, and fairly soon I passed a soft motion, and not a lot else happened. Eight hours later I took the more heavy duty Citrafleet.  This was a powder made up in water, which wasn't anywhere near as disgusting to drink as the Picolax I had to take the last time.  It was very sweet and slightly orangey.  I then had to drink a litre of water over the following two hours.  It was another half an hour after this that I passed the first motion.  The diarrhoea was fairly frequent after this and it did sting a little around the anus, but it wasn't as often as I remember it being, or as voluminous, or as urgent.  This, I have to say was quite a releif, as although I thought I had done my best to ensure that I had left the day free and did not have to do anything but sit on the toilet if necessary, I found myself very busy.  I seemed to be in charge of both my own children (4 and 2 years old) and my nieces and nephew (13, 8 and 3 years old).  This was a little hectic and there was a lot of trying to play games such as Monopoly or puzzles, or cards.  All of which were suitable for some ages but not for others. Then there was having to feed them when I couldn't actually eat anything myself, and having to share one toilet with them!  This is a fairly hectic day for me normally, let alone when I am trying to perform a bowel cleansing preparation.

Anyway, that's enough moaning, I got through it, and my Mum very kindly drove me to the hospital for the endoscopy.

I arrived a few minutes before my appointment time and was ushered down to a room where my pulse and blood pressure was taken. I was then asked to get changed into a hospital gown and wait in a "ladies" waiting room to be called by a nurse.  I put on the gown, a dressing gown (as the gowns are open at the back!) and my slippers.

In the waiting room already was an older lady.  She immediately began talking to me, which at first I found a little annoying.  I had come prepared with a book, as at this point I didn't want to think too much about anything. She was obviously nervous about what she was about to have done, and I softened a little and we chatted a little about how long we'd waited for the appointment, and how hungry we felt - how much we still felt like we needed the toilet etc.  Another lady came in, also older, and then yet another lady - older still.  It dawned on me that it was likely all these women were having endoscopies as a result of bowel screening and it was also likely the result that they were worried about was bowel cancer.  It mus be awful to reach a late age with little or no problems with your gut and then be faced with such a procedure, looking for a  potentially fatal disease. Whilst I know that Cancer is a risk with someone with crohn's, at my current age and my relatively low number of flares, it is not currently in the forefront of my mind.

After an hour of waiting, I finally entered the examination room for my colonoscopy.

I had opted not to have seadation during my pre-assessment, and was feeling rather nervous at whether I was going to experience a lot of pain.  I voiced this worry with the endoscopist and she was very helpful.  She said we would try without sedation and if I was too uncomfortable, just say and I could be sedated.  As it was I managed without sedation, which I am very pleased about as it meant I could have a conversation with the consultant and IBD nurse straight after the examination and not worry about forgetting it!

The gastroscopy was uncomfortable, becase of having to swallow a tube, having air pumped down my oesophagus, and having to bite on a plastic guard which stopped me biting on the endoscope, but apart from that it wasn't too bad.  My gag reflex wasn't too terrible, and due to the air being passed down there was some rather disgusting belching noises, but not nearly as horrific as I remember from last time.  My Oesphagus, stomach and the top of my small intestine all appeared normal which was great news.

Next was the colonoscopy.  The endoscope went in fairly easily and it was a little uncomfortable but not too bad.  The best thing about it compared to the barium enema I'd had before was that it was all visible on a television screen, and I could look at it most of the way through.  It was incredible.  It didn't seem too bad.  From my inexperienced eye, it looked like I was looking at a completely gut.  Every so often it seemed to go out of focus and all I could see was pink blurr.  Sometimes I could see brown patches which I wasn't sure whether they were remaining fecal matter, or ulcers.  I kept being asked if I took Non-steroidal Anti-inflammatories - which I don't.  I know you are not meant to if you have crohn's.  I also kept being asked if I'd ever had any internal examinations apart from the one that diagnosed me ten years ago.  At one point the consultant pressed hard on my abdomen, I assume to get the endoscope in the right place.  Eventually I said "it looks like a pretty healthy gut to me?"  At this point the consultant said:

"That's the interesting thing with Crohn's disease.  You get perfectly healthy sections of gut and then - you see this bit's inflamed here."  The bit he was talking about was the bit that was pink and out of focus.  It turned out that the brown bits were in fact ulcers, and the pink out of focus bits was a stricture.  In fact the consultant stopped the endoscopy part way a long because the stricture was too inflamed and the opening too narrow to get the endoscope safely further up the bowel!

And so, after this I have decided I must have a pretty high pain threshold, as I did not have sedation, just little gas an air, which quite frankly I could have done without.  I hate the way it makes you feel tingly and giddy, and I would prefer put up with being uncomfortable!

Below a 're a couple of pictures from the endoscopy. The top is a section of my gut which is healthy, at the sigmoid. Although black and white, you can see a defined hole, where waste passes through to the rectum and anus. Below is where it is inflamed. And it is very difficult to make it the passage that feels all matter can take. This is the stricture.

Anyway, I shall leave this post here, and in the next post I will go through the discussion and treatment proposal I reaceived directly after my colonoscopy.

2 days until endoscopy. Let the "bowel preparation" begin!

In two days time I have my endoscopy appointment.  I am having a double wammy  - a camera down my throat (gastro-oesophogeal endoscopy)  and a camera up my bum (colonoscopy).  For this to happen, my bowel has to be "cleansed".  I have had to eat only very low fibre foods for the last 48 hours.  Chicken, white rice or skinless potatoes, white bread.  Thankfully I can have butter, cheese and milk.  I love all things dairy so at least the plain white bread isn't too boring. Tomorrow morning the fun really begins.... I have to take two senna tablets at 8am.  These are herbal laxatives.  From lunchtime, I must begin fasting, and take a dose of Citrafleet, a more ... heavy duty laxative.  The next morning I take another dose of Citrafleet, and ensure I keep my fluids up. So hopefully by the time I have my appointment, the day after tommorrow at 1:15pm, I will have a completely empty bowel for the camera to go up and  view the inside of my gut.

I have done something very similar to this before, nearly ten years ago, when I had a barium enema - an x-ray to view the gut.  The same kind of preparation had to be carried out.  This time, I am far more nervous about the whole thing.  Last time I found the procedure painful and uncomfortable (not surprising really as it's pushing something through a very inflamed area of my body, where I feel some pain most of the time anyway.

I think the reason that I feel nervous this time is because before, all I wanted to know was what was wrong with me, and by that point I didn't really care what it was, as long as I could start getting the right treatment.  This time, I already know what's wrong, so that just leaves me worrying about how bad it could me. My main concern is that they might find I have a stricture.  This may account for the sudden bloating, and pain.  If I have some sort of a partial blockage, and everything is backing up in there then this would make a lot of sense.  If this is the problem, then my main worry is that it may mean surgery.  Well, I think the best thing to do now, is try not to think about it and just concentrate on getting through the next two days of preparation, and the procedure and then think about the result when I have them.

I'll keep you posted.