Jiving on Regardless











{August 10, 2007}   Knowing the System

I have still not heard about my interview but should do later today.  I have convinced myself that it is a no goer probably because I can only do part-time hours but also because I know the interview was not up to my normal standards.  However, it was good to get some practise in as I feel I shall be better prepared for the next one now. Some good news is that my husbands interview went well and he has a second soon – fingers crossed for that one.

On Wednesday I met with consultant to discuss my flexi sig results.  It showed that I have, unsurprisingly, bad hemorrhoids (piles – hate that word!) and there is the usual amount of inflammation in the bottom third of my bowel but nothing too severe.  However, my symptoms are supposedly bad enough to definitely go ahead with the Infliximab which will happen as soon as my nurse returns from hols, so in the next two weeks. He also wants to try and get me off Cyclosporin so hopes the Infliximab works.  I was concerned about this as although my symptoms are not 100 per cent gone they are at a level I have a much better quality of life with than I have ever had before. He says that using Cyclo for UC is a new thing and thus they have no evidence of long term effects.  He doesn’t believe long term effects to be a problem as there are arthritis patients who have been on Cyclo for years with no problems but at the same time he would still rather have me off them.  I am not a cynical person but I know my illness and I know I shall never manage it drug free. Ultimately I believe the drugs are expensive and they would rather I have my bowel removed.  I shall not be having that done.

For some reason I have ignored the very uncomfortable piles I have.  They have been a problem since having my second child and have never settled because of the strain of colitis.  I ought to have done something more proactive about getting rid of them, but once again I have realised that I have given in to just accepting an ailment.  Well, the new me takes charge of my medical conditions so I am now going to sort them out.  I have a steroid cream which I hate using but I shall do religiously for two weeks to see if it can sort them out, if not I shall go back to my consultant and see what else can be done.  I shall be pile free very shortly – what a horrible topic huh?!

Another annoying symptom I have had over the last few months is leaking breasts.  I have been trying to get to the bottom of it for a few months now with no joy.  They have been leaking for about four months and initially the GP thought it might be a result of a nipple infection so I did a swab test and used a local antibiotic cream for two weeks and then did a repeat swab test.  Both tests came back normal.  My GP then told me that it was a mysery and although she wasn’t concerned that it was something like cancer because of my age she did want to consult with colleagues further.  I then went on holiday and was told to contact her afterwards but to also speak to my consultant to see if it was a possible side effect of the drugs.  I spoke to Dr D and he has not seen it as a side effect before but is aware that other drugs have caused such a reaction.  He took a blood sample to test for prolactin.  I contacted my GP to advise what was happening and she too had decided to test for this hormone but is pretty certain it will come back normal. I asked her what I should do next and she said that she wasn’t sure but the only option was probably to see a breast specialist and maybe have a breast x-ray to check for anything nasty. She once again waffled on about how my age didn’t fit the criteria for breast clinic referral as the odds of it being something dangerous is slim. I then said that I didn’t feel that this was a strong enough argument to not check this out quickly as it clearly isn’t normal and isn’t explainable and although it isn’t likely to be anything cancerous I do have a strong family history of breast cancer(including leaky nipples which led to my Grandma having her nipples removed at Xmas – she is 75 but regardless).  Also, even I know that there are cases of people in their 30’s getting cancer! I then explained that I have private medical insurance and all of a sudden she was enthusiastic about me arranging a breast scan to be sure.  This really annoyed me as it suggested to me that if I was an ordinary, otherwise healthy 31 year old with this unexplainable problem with no health insurance I would be dismissed as unusual but fine.  This is so not good enough, regardless of cancer risks it is not a very pleasant thing to live with as any leaky breast feeding mother will understand!

So, the medical profession has annoyed me but fortunately I know how the system works now so am tougher at dealing with it and better at taking control.  When I first went to the doctors with my UC symptoms they dismissed it as stress, then IBS and then as nothing to worry about.  Once again as I had insurance I was able to insist on further testing and about nine months later was diagnosed.  It is no wonder so many people are mis diagnosed or not diagnosed in time on the NHS, they have too many dodgy perameters of diagnosis that the probably fairly frequent case outside of those parameters are too readily left untreated.

Anyway, I am not overly concerned about this problem as there are no sinister symptoms such as lumps or bleeding but I would just like to know what is causing it so that it can be stopped!

I digress slightly but I cut my baby’s beautiful blonde curls off yesterday.  He was looking too feminine so it had to be done but it bought a tear to my eye. He looks so different I can’t stop looking at him.

Time to stop him from drawing all over my desk!

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[…] doing a search for the procedure, I came across this post on a blog and it annoyed me greatly. The difference in treatment you get as a private patient can […]



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