Immunosupressant/biologic combo looking positive!

Firstly, apologies for the six month gap between posts!  It has to be said though, if I'm not posting regularly then it's a pretty good sign with regards my personal health!  So, in my last post, I was at the start of a combination of humira (a biologic) and mercaptopurine (an immunosuppressive) and I was trying to tail off the prednisolone ( a corticosteroid).

Well, I am off of the steroids, and it looks like the mercaptopurine, humira combination is making a difference thank goodness!  I have also been quite strict about maintaining a relatively low residue diet.  As I have been feeling relatively well and I have also been extremely busy with work, family and study, I haven't got around to an update!

I'm fairly sure the crohns is still active mind you, as there is still regular urgency, loose stools, occasional blood, blah blah blah .... BUT I hardly ever get pain, I am far less fatigued, and most of the time I forget about this stupid illness. Long may it continue!

I have recently seen my consultant, and he would like me to have a colonoscopy after a year of treatment to see if the last ulcers they saw have healed. I think it's a year in April, so the way things seem to go, if I don't get any alarming symptoms, then I should have one by about August!

I mentioned a concern over my diet as I really avoid fruit and vegetables. He suggested I try and experiment more, so I'll keep you posted about how that goes. For now though, let's just say hooray for mercaptopurine!

Is the mercaptopurine going to work? That is the question!

I have been taking the mercaptopurine for three weeks now. I'm told it takes four to six weeks for the effects to be seen. I really hope that it does something!

Every day I feel like my flare up is getting worse! The fatigue seems to be improving thank goodness. Perhaps the iron tablets are having some effect here. My IBD nurse has advised me not to take more than 200mg of iron sulphate a day, as it has a tendency to affect the gut.
However, I am suffering headaches fairly regularly, my tummy seems to feel more uncomfortable more often if I do not stick to a low residue diet. I have also noticed that high fat also seems to upset me which I've never noticed before. Also, probably the most worryingly, more Erythema nodosum seem tho appear on my legs each day!

The pictures aren't brilliant, but you can see the biggest ones. I counted them today and that's sixteen! What worries me is the last consultant I saw suffered that those crohns sufferers who get Erythema, have an aggressive form of the illness. I have been taking a low dose of prednisolone, too try and keep them under control while I wait for the mercaptopurine and humira to start doing something. I started at 10mg, and then brought it down to 5mg. It looks like I'm going to have to move it back up to 10mg again. This is very annoying as they make me retain water, and put on weight. I should be grateful that even though I'm in flare I'm not losing weight. However I am actually quite a few pounds too heavy, and putting on more would definitely not be good for me.

So, this is the limbo I currently find myself in. I'm currently taking a biologic, an immunosuppressive, and a steroid, and as yet I haven't seen much improvement, and things seem to keeping getting worse rather than better. So, will I see an improvement before I next see my consultant in August? I'll let you know!

Improving fatigue with iron supplements

After starting mercaptopurine a little over a week ago, I have suffered the worst case of fatigue that I can remember. I had put it down to the new drug, as it is one of the listed side effects, and after looking on forums such as crohnsforum. www.crohnsforum.orgI found that many people have experienced this. However  my most recent blood test showed that my haemoglobin count and ferritin levels had dropped. Could this be the reason I have been so very tired this week?

I have started to take iron sulphate supplements on the advice of my GP. 200mg a day. This can upset the gut somewhat, so whether or not I can tolerate it remains to be seen. I hope this will improve and help me to function day to day. I have a very full life, with a full time job, two children, a house to maintain, and a dog to feed and walk. Not to mention a number of other interests and hobbies I would like to persue. When I am fatigued, it can be as much as I can do to get up and dressed without feeling like I could do with a sit down. Most of the time I can ignore the feeling and keep ploughing through, but it takes the joy out of everything, and makes every task arduous. It's like you spend every moment walking through treacle!

The national association for crohns and colitis has recently completed a four year research project on fatigue in ibd, the results of which are published on their website; wws.crohnsandcolitis.co.uk
 They have created a questionnaire which you can fill in to help measure whether you are suffering from fatigue and to what degree it is affecting your daily l life. I found that I scored fairly highly in this, probably not surprisingly! I guess what I should do, is take my iron for a week or two, and then fill in the questionnaire again, and see if I have improved. I'll keep you posted on this.

Of course, the other question is, why am I anaemic? Is it my diet, as I am currently on low residue to try and reduce my symptoms. Is it that my bowel is not absorbing the iron very well, or is it that I am losing blood? (Of course it could be a combination of all three of these!)

Fighting fatigue - Is it IBD or The drugs?

I have been taking Mercaptopurine for nearly a week now, in combination with injections of humira.  It takes up to six weeks to see any effects from mercaptopurin. It is an immunosuppressive, and works by decreasing my white blood cell count, thus reducing inflammation throughout the body. One potential downside of this is that it is a bit like inducing anaemia, and can therefore make you very tired.

The past few days, I have indeed been very tired. I can't ever remember feeling so tired before! Well, at least not, when I have been trying to work at the same time! Obviously I was very sleepy immediately after my subtotal colectomy last year, but I could sleep all I wanted then as I was in hospital.

Trying to go to work, drive, hold intelligent conversation, look after two small children and do all my day to day tasks is incredibly difficult when you are feeling fatigued! I wonder what colleagues think of me when I am like this? It's not obvious that there is anything wrong with me, which means there isn't really any excuse or explanation if I don't do my work quickly or to a good standard.

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.