Thursday, 20 February 2014

Crohn's Disease - DIARY - Low Platelets - the conclusion

Wednesday 19th February 2014 - Haematology II, Guy's Hospital

The first appointment of the year and really unprepared for it. It's only two months since the last one but I've already got out of the habit. Traveling up to the London on the train in the morning I realised I hadn't even got a list of questions to ask. When I got to my office I printed off the account of my last trip to Haematology, just to jog my memory (see post - "Bone Marrow Biopsies, Follow-up and Results...well sort of"). I then re-read the post "Managing Consultants and Appointments" to make sure I put into practise what I preach. By the time I set off for Guy's Hospital I had managed to write down 7 things I needed to ask or mention on a good, old fashioned Post-It note.
List of questions for Haematology
Appointment was for 10:00am so arrived 15 minutes early for the obligatory blood test. The phlebotomist asked me if I knew why she was also taking a "histological" sample, but I didn't.

Back to the waiting area and at 10:00am my usual doctor appeared, greeted me warmly and we set off for a consulting room. She introduced me ot an American medical student, who was over in the UK to see how things are done in the NHS, and checked that I was OK with someone else present during the consultation.

She explained that after the last bone marrow biopsy one of the samples, which should have gone for histological testing, had either been mislaid or mis-labelled so did not make it to the histologist. This is why she had rung me a few weeks back to explain the situation. She had however looked at the other slides from the second biopsy and these were fine. She had discussed the missing sample with the chief histologist and he suggested doing a particular type of blood test which had proved to be 60% effective in spotting problems, if there were any. The results would be available in a week's time. The alternative was to have a third bone marrow biopsy but they didn't want me to put me through that again. I'm really not that fussed.

...and so to the list :

1) Long term prognosis - will not affect the other  issues I have - Crohn's, PSC, PVT. Must avoid use of Azathioprine in the future. Today's platelet count = 74, an increase of 18, but don't get hung up on the numbers as I am currently asymptomatic ie. I don't bleed profusely if I cut myself.

2) Cause of low platelets - no signs of any marrow abnormalaties which could have pointed to a more sinister conclusion ie. leukemia therefore cause is drug induced - long term use of Azathioprine.

3), 4) and 6) Treatment - none required but look out for any signs of starting to bleed more easily. Six monthly blood tests and outpatient appointments. A platelet count of 50 is the threshold for having minor surgery or teeth extraction so no need for special measures at present.

5) Medical Synopsis - some inaccuracies had crept into the synopsis at the top of the last follow-up letter. I wasn't sure if they were significant but we went through them one-by-one and put them right. (I had already emailed my gastro consultant a few weeks back with the correct information)

7) Follow-up Letters - this was an area where we had had issues in the past. I requested that follow-up letters were sent out as soon as possible after an appointment as the last time I saw my gastro consultant he was unaware of my bone marrow biopsy etc. She promised to improve the timing in future and would write to me as soon as the histological results were back.

I mentioned that as part of the NHS Change Day (3rd March 2014) I had pledged to give feedback to my consultants on the service they provide (whether they wanted it or not!). This was my first chance to put the pledge into action. She thanked me for my feedback.

10:20am appointment completed and on way back to work

SUMMING UP

The low platelet issue had originally been "parked" but in September 2013 I felt that we really should investigate it further so we could decide if Azathioprine would still a viable drug for treating my Crohn's and  to make sure there wasn't a  more serious underlying problem. My gastro consultant supported this and the investigation started.

Two bone marrow biopsies later and we have the answer. The low platelets are not indicative of a bone marrow abnormality but are drug induced with the likely cause being to 8+ years of Azathioprine. It is a known side effect of this drug. Azathioprine is sometimes used to maintain Crohn's remission but if I get to the point where I need to go back on medication it will not be considered as an option.

The low platelets can return to their parking bay.

...and the implications for other Azathioprine users? The above is just MY experience of taking that drug and as we all react differently to medications you should not assume you will end up in the same situation. Whilst I stopped taking it when we realised there was a potential problem it has not damaged my bone marrow sufficiently to need to take further action. The haematologist described it as like having a "four cylinder engine but only running on three". Would I have agreed to starting Azathioprine back in 1998 if I knew then what I know now? Yes. For nearly ten years it kept surgery at bay so that when the knife became inevitableI was in a much better position both financially and mentally to cope.

If you want to read about having a bone marrow biopsy then have a look at "Chapter 15 - Crohn's, Azathioprine and Low Platelet Count"

Sunday, 2 February 2014

Crohn's Disease - OPINION - Cure vs. Remission: Thoughts From a Crohn's Sufferer

A Personal View

I don't want this post to be taken as negative. I try not to do negative. I just wanted to record what cure and remission mean to me as a long term Crohn's sufferer. I stress that it is based on my experience, medical history and the particular "type" of the disease that I have.

Are there different types of Crohn's? The consensus appears to be that there are 5 types and, to complicate matters, they are not mutually exclusive. There are other factors as well - such as age at onset. (The list is shown at the bottom of the post). Reading the descriptions I reckon you can put me down for 2 out of the 5.

The Cure

This is one subject that is guaranteed to stir strong emotions in the IBD community. Everyone wants a cure - period. As sufferers we don't want this terrible disease inflicted on anyone else and WE want to be better. There is a lot of promising research going on around the World but, as yet, no definitive answer to what causes Crohn's or how it can be cured.

For those patients who claim to have found their own "cure" there is, quite rightly, a lot of scepticism from other sufferers. Often there appears to be a hidden, or not so hidden, agenda - a book to publicise; ground up tree bark to sell; marijuana to legalise etc. Unfortunately some of the popular press in the UK choose to ignore the facts just to get a good headline. I was inspired to write a post about one particular "cure" claim that didn't ring true when you read the details. The link to my post is here  - http://t.co/DfdokeZkHl

Let's wind back a bit. How would you answer these questions :
  • What do the words "a cure for Crohn's" mean to you?
  • If there are 5 types of Crohn's do we need 5 cures?
  • If a cure(s) became available today how would it affect your lifestyle now, and in the future?
When I was first diagnosed the internet and the opportunity for in-depth research didn't exist. If you had asked me these questions I would have said "One day there will be a medication that makes Crohn's go away and life return to normal". Simplistic and uninformed but that's pretty much the attitude I have lived with over the years. I haven't tended to give a cure very much thought as there have been so many false hopes raised in the media that I've become numb to the concept. At the beginning of December I had reason to rethink what a cure might mean and how it would affect me now......

Remission

Another question - what's does remission mean to you? 

For me, between 1981 and 2007, it meant relief from the usual side effects of the Crohn's. In practical terms - no rushing off to the bathroom; not having to watch what I ate; once yearly visits to see my consultant and no barium meals or enemas. The dates are shown on the chart below which gives an overview of my Crohn's history. The timespans marked as "good" could be described as "being in remission". The inflammation was still present and I would get flare-ups every now and then. These were treated by increasing the steroids for a while but for the most part my life was unaffected.


The bad patch spanning 1998 to 2001 represents the period between being diagnosed with a stricture and starting Azathioprine. I was pretty low during that time - bad pain around the stricture, difficulty in finding a position I could get to sleep in, having to take time off of work - I'm sure other Crohns' sufferers will recognise these problems and have been through far worse themselves. There then followed another 6 or 7 years back into a sort of remission brought on by and maintained with 150mg of Azathioprine each day. That phase ended shortly after stopping the Azathioprine.

Jump forward to 2011 - following surgery I've now entered a different type of remission - clinical remission. The inflammation has completely disappeared. This is not speculation as I have seen it (or rather not seen any sign of it) with my own eyes during the two colonoscopies since surgery. The consultant is hopeful that it will be a few years, at least, before it becomes active again. As such I have stopped taking any Crohn's drugs apart from Loperamide (Imodium) as a regulator.

.... at the beginning of December my GI consultant made a comment that surprised me. I had asked him about taking Loperamide long term to which he replied that due to the surgery I had undergone he wouldn't expect my digestive system to ever work properly again, hence the capsules. It wasn't something I had considered before. I had lost 14cm of small intestine which didn't sound very much when compared to some of the surgeries I have read about.

[Addendum - June 2014 - I was so intrigued by this statement I repeated it to the consultant at my appointment in June. He said but it wasn't what I was missing that had prompted his remark, more the effect of a surgeon having been in and rearranged my guts. Thinking about it subsequently, the operation in October 2010 was not simply to remove a stricture but to sort out internal fistulas and loops that had formed. The operation took four and a half hours and the surgeon described it as "one of the most complicated and enjoyable" that he had carried out. The way he phrased it will always amuse me].

Now I find myself in a position where although I'm in this clinical remission, which I would consider to be a deeper remission than I had previously experienced, but my day-to-day life is still punctuated with the equivalent of "flare-ups" requiring fairly rapid transit to the nearest bathroom and the taking of some additional Loperamide capsules. From a quality of life/Crohn's point of view, day-to-day living is no better or worse than the period between 1981 and 2007.

Then there's "mental remission". Your brain gets patterned into the "Where's the nearest bathroom? Am I going to be OK when I go out?" mindset. Breaking out of that, even when you are feeling good, is very difficult. I've found it impossible.

The big change, for the worse, is the amount of time I spend in Outpatients for appointments and procedures mainly due to some rather nasty side effects probably as a result of the Crohn's and/or surgery. The last two years have been particularly intense. I'm hoping that it will quieten down for subsequent years.
 
If a cure came along now I'm guessing that it would make little or no difference to my life in the short term. Long term it would prevent inflammation returning and that would be very welcome.

[Addendum - August 2014 - I continued to complain about having to dash of to the bathroom so my consultant suggested I should undergo a SeHCAT test to see if I was suffering from Bile Acid Malabsorption (BAM), the symptom of which is bad diarrhea. I've now had a SeHCAT test done and have been diagnosed with severe BAM - see the post entitled "BAM and the SeHCAT Test"]

Cure and Remission

I had already decided to write this post when I saw reference to a piece on HuffPost's "Healthy Living" site, written by Rebecca Keplan (@RebeccaKaplan), entitled "Cure vs. Remission: Thoughts From a Crohn's Caregiver". It prompted me to put finger to keyboard. (Link shown below)

Crohn's affects each of us in a different way. Just look at some of the stories on IBD forums or search #crohns or #IBD hashtags on Twitter to see what some sufferers are going through in realtime. The spectrum ranges from mild disease with little affect on lifestyle to all out attack on the digestive system resulting in multiple bouts of major surgery and a permanently changed way of living.

Likewise the implications of the words "cure" and "remission" to Crohn's sufferers, regardless of their dictionary definitions, will be dependent on just how far through our Crohn's journey we are and how rough a ride it has been.

Here's the link to the HuffPost article - http://www.huffingtonpost.com/rebecca-kaplan/personal-health_b_4675394.html

References

Here's a quote from WebMD website

"The five types of Crohn's disease and their symptoms are:
  • Ileocolitis: Ileocolitis is the most common type of Crohn's disease. It affects the small intestine, known as the ileum, and the colon. People who have ileocolitis experience considerable weight loss, diarrhea, and cramping or pain in the middle or lower right part of the abdomen.
  • Ileitis: This type of Crohn's disease affects the ileum. Symptoms are the same as those for ileocolitis. In addition, fistulas, or inflammatory abscesses, may form in the lower right section of the abdomen.
  • Gastroduodenal Crohn's disease: This form of Crohn's disease involves the stomach and duodenum, which is the first part of the small intestine. People with this type of Crohn's disease suffer nausea, weight loss, and loss of appetite. In addition, if the narrow segments of bowel are obstructed, they experience vomiting.
  • Jejunoileitis: This form of the disease affects the jejunum, which is the upper half of the small intestine. It causes areas of inflammation. Symptoms include cramps after meals, the formation of fistulas, diarrhea, and abdominal pain that can become intense.
  • Crohn's (granulomatous) colitis: This form of Crohn's disease involves only the colon. Symptoms include skin lesions, joint pains, diarrhea, rectal bleeding, and the formation of ulcers, fistulas, and abscesses around the anus.
There can be overlap between these types of Crohn's disease. Some people have more than one area of the digestive tract that is affected."

There is also the Montreal classification system which take further factors into account such as age of onset, location and behaviour of the disease. I'll leave you to look that up if you're interested.