Back in full flare

It's been four months since I last posted, but although my blogging has been quiet, I afraid the same can't be said for the Crohn 's!


I took the course of prednisolone which helped clear up the Erythema which was good, and at the beginning of March I went for another colonoscopy and gastroscopy. I was rather surprised to see that what was left of my colon had a long ulcer measured at 15cm long just down from the anastomosis (the join between the ileum and the sigmoid. ) There were also a couple of small ulcers at this join. I was surprised just how much ulceration there was, as although I had a feeling I was flaring I was hardly feeling any pain.

Ten days later I had an appointment at the GI clinic and saw my nemesis of a GI consultant. We'll call him Mr Smith in order to keep within slander laws. He rather bluntly told me that there was no cure for crohns and hence no wonder drug. (Like I didn't know). He suggested I just carry on, without any medication and see how I get on. Before I could argue a case he changed the subject and asked if I would contribute to his research project. Of course I agreed because if I can contribute in anyway towards research into crohns and colitis then I will. By the time I got home I was fuming! The research was on people with colitis who were in remission. As far as I could see, all the info pointed to the fact I wasn't in remission. Immediately, I got in contact with my GI nurse, stating that I wasn't happy with being left without any form of treatment at all, and I was worried my condition may quickly deteriorate.  She replied the next day. She agreed and said the rest of the GI team agreed that I wasn't in remission, and I would be restarting humira.

Well I've been on humira for twelve weeks now, which is how long it can take to see results with a biologic drug such as this. Unfortunately I haven't seen any real results so far. Two weeks ago my Erythema nodosum returned, and I am now beginning to experience abdominal pain again.  I went tho the GI clinic last week, with all my fingers and toes crossed that I wouldn't see Mr Smith again!


 I feel very blessed as it was not Mr Smith! It was in fact a consultant I had never seen before. we'll call him Mr Jones. He spent time ensuring he knew my full history of crohns. He seemed very surprised that I'd never had any drug but mesalalisine and occasional prednisolone before trying the humira. He said that my crohns was aggressive, and having had a pyoderma gangrenosum before and regular Erythema nodosum, these should sound alarm bells for what is happening in the gut. He wanted me to start an immunosuppressive in combination with the humira, and wants it started as soon as possible as he didn't want the disease to spiral out of control. Finally a GI consultant that seems to be on the same wavelength as me!

I started mercaptopurin three days ago. It can take four weeks before it s effects are seen, so here's hoping! It works by reducing my white blood cell count, which should stop my body from attacking itself in the form of ulcers and inflammation. I have to be careful that my white blood cell count doesn't drop too much though as this might leave me liable to infections I can't fight off. For this reason I need weekly blood tests to begin with.

I just need to sit tight now. However my Erythema nodosum are beginning to come out on both legs and one in particular, I am worried may develop into a pyoderma. I would like not to have to take any more prednisolone, bit I may need to while I wait for the other two drugs to have an effect, or I'm going end up having to take time off work!

Next colonoscopy booked . . .

I got a letter through the other day, saying I could now phone the colonoscopy unit at the hospital to book my procedure. I phoned up straight away and it is now booked for 4th March. Still three weeks away, but at least there's something to aim at. I've dropped my steroids down to 10mg a day, but not sure I can go further, and may even need to increase again, as bowel movements now have no form, and are fairly frequent!

Anyway, the good news is they've sent me my laxatives through the post, and they are going to phone me to do pre assessment over the phone. I had to go in for this last time, just to be told what I could read on the paperwork for myself. Considering the hospital is more than an hours drive away, this was rather annoying!

The bad news is, it falls on a Tuesday in term time. I was hoping it might fall next week when I am on holiday, but as it is, I will have to take two days off work, due to the cleansing procedure.  This will go as follows :

Three days before the colonoscopy, I begin a low residue diet. The day before, I stop eating and take the laxatives. This empties my gut of all its contents.  The no eating, coupled with very frequent trips to the toilet will make it impossible to work.

It's annoying that I will have to take time off for it, especially when we are understaffed, but on the other hand, at least my week off, the week before won't be ruined! So there is a silver lining in every cloud!

a more interesting low residue dinner

Low Residue Beef Stroganoff with white rice

When I'm following low residue, I like to take advantage of the fact that dairy is low residue.  For some people, high fat content can be just as much of a limiting factor as fibre content. It's important to bear in mind however, that just because it's dairy doesn't mean it has to be fatty and greasy.

One of my favourite meals that feels very indulgent is stroganoff. I make it with creme Fraische rather than cream, which both cuts down the fat, and gives it a bit of zing I tend to use beef, but any meat could be used. Chicken is the lowest residue, and its worth noting that pork is very common as a trigger food for inflammation in the gut. I try and avoid pork if I can, but I can't back th out up with any evidence. As with any of my recipes, approach the ingredients with caution, and leave out or substitute according to your own gut!


Serves Four

Ingredients

1 lb. Frying steak cut into strips (rump is best, but cheaper frying cuts will do fine)
Onion granules
1/2 teaspoon cumin
Freshly ground black pepper
1 teaspoon paprika (if tolerated)
1red pepper, grilled, skinned, deseeded and cut into strips
250ml half fat creme fraische

1 mug white, long grain rice
Knob butter

METHOD

Begin by preparing the pepper, as this is the mosr fiddley. Cut in half and place skin side up under a hot grill.  Cook until skin is black and charred.  Wash under a cold tap to remove the skin, and then cut into thin strips.

Now, place a knob of butter in a saucepan on a medium heat. Add the uncooked rice to the saucepan and continue heating for one minute, stirring constantly, until all the grains have a thin coating of butter. Add water according to pack instructions and bring to the boil.  Meanwhile, place a frying pan on a high heat, and fry the strips of steak. Add onion granules, cumin, and paprika if using. Cook until steak is sealed on each side.  Add peppers and bring up to temperature.  A splash of white wine in the pan at this point is nice, but a couple of tablespoons of water will do.  Stir in the creme fraische and and slowly heat with stirring to form a smooth, silky sauce. If you heat it too quickly at this point then the creme fraische may split.  Simmer gently until rice is cooked.  Serve the stroganoff with the rice. Will go well with carrots, or broccoli florets.

low residue diet recipes

Coley with white sauce and boiled potatoes

I posted some time ago about low residue diets, and included a recipe for low residue lasagne. It has always been my intention to post further recipes, but following my bowel resection I stopped personally following a low residue diet. However this is something I refer back to when I find my gut feeling a little sensitive, and on these occasions, I try my best to keep my meals interesting, even if I am only following low residue for a few days. I find that keeping it as interesting as possible, you automatically keep it as varied as you can. This is particularly important when following such a restrictive diet.

So here's another recipe that is low residue, but still feel fairly well balanced:



Ingredients:
Coley steak (or any other white fish such as haddock, or cod)
1 cup milk
1/4 fish stock cube
Pinch parsley (if herbs are tolerated)
Dessert spoon corn starch
One medium potato, peeled
Broccoli florets, stems removed

METHOD

First peel potatoes and place in saucepan. Cover with water and bring to the boil, allow to boil for five minutes. Meanwhile bring a separate pan of water to boil for the broccoli.
Put the milk in a shallow pan on a medium heat and bring to a simmer.
Crumble in the fish stock cube and parsley if using.
Add fish and cook gently until opaque. At this stage, put the broccoli into the boiling water, to begin to cook.
Remove fish from milk and set aside.
Stir the corn starch in a little cold milk and pour into the hot milk, stirring constantly. Bring to a simmer, until the sauce thickens. Add salt and pepper to taste.
Return fish to pan to ensure it is the same temperature as the sauce.

Serve with the boiled potatoes and broccoli florets.

Time for more colonoscopies

So I saw my consultant yesterday.  I have been on prednisone for two weeks at 20mg, and I explained that although it was clearing my erythema, I wasn't so sure about my gut. She has told me to only reduce the prednisolone very slowly, and go back up if things worsen. She has booked me in for a colonoscopy, gastroscopy, and MRI of the small bowel. She wants to see if there is inflammation, and if there is, then how aggressive the disease is at the moment. This will determine whether the treatment is something such as azothioprine, or if I need to go back on to biologics.

In part I am pleased that this is the course of action we are taking. The colonoscopy, is a hassle with two days worth of bowel emptying to prepare for it, but at least we'll be able to see exactly what's going on.  She told me I'd be booked in for two to three weeks time. This may work out well as I'm on half term with school in three weeks.  Although having said that its a shame that whenever I get holiday it seems that I spend that holiday at the hospital!

Of course it may not fall in half term. I got an email from the ibd nurse today saying that the examinations would be a while away. She said to let them know if things got worse as we may have to temporise things with steroids. This is a bit of a blow
 I don't want to be on steroids any longer than I have to. I'm really hoping not to put on any extra weight!

Erythema Nodosum

So, following my partial colectomy in July, I was really hoping such drastic surgery might put me into remission for a while. the surgeons ensured that they took any diseased bowel that they could see. , whilst I know that the problem with crohns is that it can come back, I was really hoping for a few years of remission.
After recovering from my surgery I felt pretty good. No pain, no discomfort, I didn't need to think about bowel movements, or whether or not I was going to stink out a public toilet.  This was not to be a long term feeling it seems.

Just before Christmas, I noticed a small red mark on my right shin. I recognized what it was immediately. Erythema nodosum. It's not a brilliant image, but below is a picture of it. This is an extra intestinal manifestation of crohns disease that I have posted about before. They are inflamed areas just under the skin, usually appearing on the shins. I tend to get them when my crohns is active.  I couldn't believe it when I saw it there. I hoped I was wrong, and so for a day or two I did nothing. It steadily grew bigger, and was hot to touch, then it began to get itchy. At first I thought that I wasn't experiencing other symptoms, but the more I thought about it, the more I realised, I'd just been ignoring it.  I got on to my ibd nurse to tell her about the Erythema. I also told her that I was sometimes getting loose bowels, had an aching knee joint, and a little acid reflux.  The nurse was great. She immediately got on to my GP, to ask him to prescribe some steroids, and brought my next check up forward.

I have now been on prednisolone for two weeks.  My Erythema is clearing, and the two or three others that were just about becoming visible have disappeared. This is great, but the other symptoms don't seem to be going. In fact they seem tho be coming more pronounced. Loose bowels are once again the norm, and yet again, I'm back to worrying  whether my next public toilet stop is going to be embarrassing.


Ho hum, I have my appointment with my consultant tomorrow. I guess I can talk about other treatment then.

For the bowel to heal, it needs nutrition

After my bowel resection I found recovery very slow. Yes, I was in a lot of pain, but pain, I am used to. I walked slowly, and it was a real effort to hoist myself out of the bed and sit up for any length of time, or simply go to the toilet to pass water. All this I could cope with. The thing I really struggled with was the nausea.  I stopped taking the morphine related painkillers, because I kept being sick, but my surgeon insisted I continue to take something other than paracetamol. She prescribed me paracetamol, and tramadol at alternate intervals, combined with three different antisymetics so that I could have something to reduce the nausea every four hours.  On paper this was a perfect solution. In practice, where you can not access your own medicine, but have to wait for a nurse to bring it to you, this was not so perfect.   I did not like the way tramadol sent you into a hallucinatory sleep, so I tried my hardest to do without that anyway.

The real problem though, was that the ward was quite simply understaffed, so getting antisymetics every four hours was impossible. If I kept an eye on the time myself, and called for somebody, to get my next dose, by the time I actually got what I asked for, I was already feeling sick again. Couple this with breakfast lunch and dinner being very efficient, it was a recipe for disaster. You could pretty much guarantee that half an hour before a meal was due to arrive, I would be feeling like I might manage to eat something.  Then I would begin to feel tired and nautious. I would try to get hold of an antisymetic, but it wouldn't materialize. Then a meal would turn up and I wouldn't be able to eat it. Then the porters would come and clear it away and note down I still hadn't eaten anything. Then, of course, a nurse would turn up with the antisymetic I'd asked for an hour ago!

This went on four days. We were also in the middle of a heat wave. By God it was hot.  When asked by the surgeons how I was doing I lied through my teeth. I wanted to get home, they wanted the bed free, nobody wanted an excuse for me to stay any longer!

When I finally made it home, five days after my operation, several family members wondered whether I should have been discharged. It quickly proved to be the correct course of action, as in no time, the nausea cleared, my appetite returned and I made very rapid progress indeed.


A few months later, my mum's dog swallowed a marble, and got it stuck in her bowel. She had to have it cut out, and basically had a small bowel resection. My mum asked the vet whether she should be feeding her , or letting the gut rest immediately  after the operation. He replied that after an operation such as this, the gut needed nutrition in order to recover. For this reason, the dog was tho be fed as normal. When my mum related this story to me she simply said at the end. "It's no wonder you didn't start to recover from your opp until you came home!"