A pristeen ileum

Finally, I have an update that is absolutely definitely, 100% positive.  I have been for my colonoscopy to see if my biologic/immunosupressant combination is working. The results are brilliant.  The pictures below show a stricture free and ulcer free rectum (top photo)  A "pristeen" ileum (middle photo - the scope only actually went through 30cm to the small bowel, but what we could see was good), and an anastamosis (bottom photo: the resultant join between the sigmoid and the ileum after my subtotal colectomy) with just one small ulcer.

In plain English, this is fantastic news.  My last colonoscopy revealed ulcers along the rectum to the sigmoid one of which was 6 inches long, and several ulcers around the anastamosis which were "friable"  meaning active and with dead tissue surrounding them.  These pictures prove beyond doubt that healing has taken place and I pretty much do not have any active Crohn's disease at present.  Woo hoo!

I can't believe just how good I feel about this.  I know I have been feeling well in general, but there has always been this worry at the back of my mind that things may be bubbling away in there without me realising it.  Now I know I am definitely on the right track with regards my treatment.  I will continue with my fortnightly Humira injections, and taking 50mg of mercaptopurine a day.  I will also continue to avoid whole foods (brown bread, brown rice, brown pasta) and pulses (peas, beans and lentils).  I may experiment a little with other vegetables, but will basically keep my portion sizes of roughage relatively low.  Here's to kicking Crohn's ass and getting on with life!

Colonoscopy number three tomorrow

You know, sometimes I wonder if i have a sixth sense. My last post stated i was six months into my meds combo, and that would make me due for a colonoscopy in April, which would probably mean I'd have it in August. Well, what do you know, it's September 3rd and I'm in for a colonoscopy tomorrow!

I am half way through my 4th total bowel evacuation courtesy of citrafleet and oh my goodness I don't remember it making my behind quite so sore! To say every bowel movement (and believe me it's given me plenty of those) smarts, is an understatement. Thankfully its calmed down now so I should be able to sleep before I take another dose of the horror that is citrafleet at 0600 hrs. Then the frequent loo trips can start all over again so that my bowel is lovely and clean for the endoscopist!

I really hope we see healing happening up there this time. I have generally felt very well over the past six months, hence the lack of blogging activity. What worries me is things may still be bubbling away without me realising it. Well, I'll find out tomorrow anyway. I should be grateful really. I know my illness, and after this colonoscopy I'll have a far better view of its status. There will be plenty of people in that departmtent tomorrow who don't know what's wrong, who will be fearing the worst, and who will go away without answers and be waiting for biopsies to come back.

Anyway, here's to a good nights rest before tomorrows fun filled day ....

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!