IDC,Crohn's and now blood problems

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Hi all, some of you will know me from 5 yrs ago and although I dip in here occasionally, am busy doing the Community leader’s job for Crohn’s on Medhelp, so don’t post here often.

Got a bit of a problem and trying not to get too agitated. For the past 4 months I have lost some 2 stones in weight, no appetite (on 3 bottles of Fortijuice daily), nausea, bloating and severe pain in my lower abdomen, particularly very early morning, 4am , 6 am etc and only relieved by having a painful bowel movement. Saw my gastro 2 months ago, who was very concerned at my weight loss and he has doubled my weekly chemo (methotrexate, which I inject at home) and put me back on steroids…Budesonide., domperidone for the nausea (shades of FEC chemo?!!) Omeprazole for the ulcers in my oesophagus and too many other drugs that I have difficulty in remembering to take them all.

Not much improvement, although with the Fortijuice my weight has now stabilised around 102 lbs. Had to buy a whole new wardrobe, 2 sizes smaller, as I look like a clown in my normal clothes. Going to have a big sort out next week and take all the size 12/14 clothes to a new charity shop in our local village for Eastern European people that have invaded Cornwall recently.

I normally keep my complicated health problems to myself and my very supportive 80 yr old husband, who has his own rare health problem, but on Monday my only close friend down here in Cornwall called and said she is very worried about my loss of weight and not being able to eat.We recently went with 9 other people to Spain to celebrate my husband’s 80th birthday and one of our group, an 85 yr old male widowed friend went to a supermarket and bought me some egg flans, packet soups, tinned rice and custard because he was concerned that I couldn’t eat, and I could only take so many Fortijuice drinks on the flight.

My friend here actually threatened to call my GP unless I was proactive. I called my Inflammatory Bowel disease specialist nurse immediately, told her my current symptoms ( I have two strictures in my small intestine that are probably causing the current problems) and she said she will get me an appt within 1/2 weeks with my gastro. I asked if I could go privately, and she said a definite no - the Nuffield in Plymouth cannot deal with my problems. Ten minutes later, I get a call from my GP’s receptionist to say that my blood tests last Monday are causing some concern and I need an appt with the Gp - got one Friday afternoon. Rang the IBD nurse back, she looked at the computer and said my white blood cells are highly elevated, red cells and platelets too low, so see the GP as arranged on Friday. Jeez, what can she do?

I am hanging onto the fact that I have been on methotrexate for 7 yrs now…2 yrs before I got idc…now that is something I cannot figure out, neither can my gastro. Methotrexate was used for bc but has been superceded by newer chemo therapies, as I had with FEC. How come I got bc? Gastro said he would look into it, but hasn’t followed up. Haven’t seen an Onc in 5 yrs, after finishing chemo and rads, except for a private HER2 test some 2 yrs ago, which was thankfully negative.

My gastro has talked to me about the new biologic therapies for Crohn’s, but said because I have had breast cancer, I am at high risk for blood cancers, leukeamia, lymphoma etc. and he will not prescribe them. I accept that.

Now, I am wondering what is wrong with me…mind in overdrive…I am not depressed or concerned about future medications, just need to know what is wrong and then I can get on with sorting it out.

Sorry for such a long post…don’t know where else to go with people who truly understand where I am coming from. Tried to talk to my elder sister last night - no other close relative…and she unbelievably said " I can’t cope with your probems Liz"…Duh??? where is she coming from? Perhaps, charitably, she is concerned about our genes…our father died at 59 yrs old of colon cancer, my twin brother of a brain tumour at 50 yrs… so I backed off and have resolved never to talk to her again about my health. Thank goodness I have very caring friends, two of them in the USA who are battling their own problems with husbands with lung cancer and prostrate cancer.

Sometimes I just despair, but then I “talk to myself” and realise my wonderful husband needs me…says it all, eh?

Thanks for listening.

Love,
Liz

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Hi Jane,

so many thanks for your caring post. Today I got an appt in the mail to see my gastro on 14th October and will discuss with him a stricturplasty for the two, or indeed more, narrowings in my small intestine, that may be one of the causes of my current problems. He said this procedure is only a temporary solution as with some 40 yrs of steroids the strictures will come back in another part of the small intestine, but at least it will be a relief from the severe morning pain. Some days, if I have eaten just a small low residue meal, I almost faint on the loo and can’t get my breath.

I don’t know what the problem is with my bloods but hopefully the part time female GP I am seeing tomorrow will enlighten me. A recent CT scan showed significant inflammation in my terminal ileum and I can only surmise that this has become worse, hence the elevated white cells. This Dr. is the junior partner in our small GP’s practice and only works one session a week normally, but luckily the senior partner is away on some course or other, and she is doing extra sessions. She is rather “strange” as my GP’s nurse tells me, and I have only seen her twice, but she was very thorough and I do have faith in her. At least she bothered to look at my blood test results on Monday and got the staff to contact me for an appt.

Not sure where I go from here as I am on the maximum weekly dose of methotrexate, 25 mg subcutaneously, and 6 mg daily of steroids. I am just concerned about some kind of blood cancer as my gastro seems to mention the possibility each time I see him. He used to work at the Royal Marsden as an Oncology Registrar until, as he said, he became so depressed treating young people that had no hope of surviving, that he changed to gastroenterology.

Ah well, will wait and see what tomorrow brings and go forward from there.

Again, my thanks for caring.

love,
Liz.

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Hi liz

Good luck Liz for tomorrow and let us know how you get on.

I do not post very often but browsing this site since my diagnosis in Sept 07 has been so helpful and I’ve read you posts which have been so supportive and understanding - as if you have not got enough to deal with.

Thinking of you tomorrow.

Val

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Hi Liz

Will be thinking of you tomorrow xx

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Hi Jane, valderie1 and kayty…

Thanks so much for your support…don’t know why I posted this problem on here, as I don’t know anyone with breast cancer and Crohn’s…I try and do my bit of support and experience on the Crohn’s Medhelp site as the Community Leader, and I know it is appreciated, just wish I could contact someone with similar concurrent problems.

I have struggled for almost 6 yrs now with breast cancer and Crohn’s, and on initial dx of bc was alarmed that my first Oncologist told me in no uncertain terms I had to discontinue my weekly cytotoxic methotrexate in order to have FEC, otherwise I would die of septicaemia. Gastro said he couldn’t intervene in bc chemo. Finally found a Professor gastro at the only IBD hospital in England, St, Marks in Harrow, via e-mail, who said they had treated a very few patients with concurrent diseases, but as I had a steroid induced psychosis on dx of bc, he would not recommend steroids… So…no help whatsoever from any quarter. I changed my Onc and got through FEC with great difficulty, being housebound with faecal incontinenance, twice in the street to my utter chagrin, except for my chemo treatment. How my aged husband coped with me, I do not know, but he did.

So much for my history…I saw my female GP yesterday…first thing she said was: “You are terribly thin!”…tell me about it…down to 6st.10 lbs today, even with enteral Fortijuice 3 times a day. I have spent £1,000 in the last 4 months on new clothes and today packaged up half of my wardrobe for bc charity. She is a “listener and thinker”, thankfully, and as I can talk for England, I decided to be the protagonist.

She said the reason she called me in is because my white blood cells are exceptionally high - they were fine a month ago, as my GP’s nurse gives me a print-out each month. My MCV and MCH red cells are always elevated due to the methotrexate and that is not a problem my gastro tells me, now I am taking folic acid daily. She said she wanted to get me an urgent appt with my Consultant gastro (who is brilliant and blinds me with science as if he is talking to medical students) and I told her I already have one for the 14th October. Guess that puts Crohn’s problems outside her expertise.

She then said: “How are your waterworks?”…yucks, I hate these medical euphamisms…tell it how it is and up half the night. I am almost paranoid about going out now in case I can’t get to a lavatory. Told her my Mum got type 2 diabetes at 61 yrs, dx because she had a thirst problem, don’t know about her urination profile as she was too private to tell me about that. GP didn’t say much else except to give me a urine sample bottle and told me to take it into the surgery by 9.30 am Monday for the hospital courier to pick up. What a relief it will be if my current weight loss is due to diabetes…just another pill to take along with the 8 others I take daily and my weekly injections of methotrexate. Unusually for me, I almost broke down and told her I feel as if my body is falling apart. Wow, she gave me a hug as I left and said she will sort things out.

I had hoped for more information yesterday as to why my white blood cells are so elevated…I asked if the pain/inflammation in my terminal ileum is the cause…she said I have inflammation somewhere in my body, but as I have no fever…thankful for small mercies eh? …there must be another reason. I can’t second guess that, and she doesn’t share her hypotheses or thoughts, just thankfully gets on with sorting me out.

I am going to be very forceful with my gastro on the 14th and demand he does something about these darm strictures. When I attended, quite unusually, the AGM of our local Crohn’s & Colitis Assocn meeting in July,that my gastro did an unintelligible slide show on genetics, biologic therapies, he introduced me to a drop dead gorgeous South African gastro surgeon…duh? My gastro said Mr. Dourie is the only gastro surgeon he will trust with his Crohn’s patients and pointedly said: “You are going to see a lot of him in the future Liz”. I was so taken aback that I didn’t pursue the conversation. At my last gastro appt, I asked Dr. Hayward when are the strictures operable? He smiled, looked me in the eye" and said: “when the pain becomes unbearable”. Well, I should have said that I have dealt with almost unbearable pain for some 40 yrs, but medications have always sorted the problem out…now, there are no medications for strictures, so I guess surgery is the answer.

I have a holiday apt at the Fort where I live, and my 80 yr old husband is not willing to do the weekly changeover, although will see to maintenance problems. We bought this apt when I was dx with bc which had spread to my lymph nodes and we decided to buy this for a carer as we have no children or relatives, except my useless sister some 600 miles away, that I don’t want near me. This year has been fully booked except for 2 weeks last February, but I have no bookings in December… so I am hoping I can get the stricturplasty done in December and get back to a “normal” life…whatever that is.

Jeez…just meant this to be a quick update…but lovely to “talk” to you all, and again thanks so much for your support…it means a lot.

Love, Liz.

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Hi Liz

Just wanted to say Hi.

I have had Ulcerative Colitis for 10 years and this year I was diag with breast cancer at 47 yrs.

Good luck with your new lovely surgeon!!!

Why does one thing happen after another?

Take care
Kay x

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Hi Liz

Thanks for keeping us up to date - I was wondering how things were going for you. So glad your doctor was sympathetic and caring - I know it doesn’t ‘cure’ you but I’m sure it makes you feel more supported. Can you take someone with you to your gastro appointment? I know some people prefer to go to appoinments on their own - I sometimes did take a friend/husband and other times when I was/am feeling strong I go on my own. My medical knowledge is very limited (but learning much more since diagnosis of bc!) so would not like to comment on your white blood cell count just hope that you can get it all sorted out - as usual it is the waiting around which is the worst part.

Keep us up to date with your progress and I’m keeping my fingers crossed for you.

Val

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Hi valderie and kayty,

|Many thanks for caring and sharing.

Kayty - sorry to hear you have ulcerative colitis, but know you understand the problems. Are you in remission at present? I truly hope so. My Crohn’s started in my small intestine, 40 yrs ago, around the terminal ileum, but has now spread to the colon so the dx is PanCrohn’sColitis. Fortunately, I have never had to have a resection, as steroids and the immuno-suppressant methotrexate have usually kept the disease under control, although I have been hospitalised a number of times with severe recta haemorrhages - usually my own fault in not seeking medical attention when a flare starts, and the ulcers/crypt abscesses burst. I have often felt that dealing with intractable Crohn’s is much worse than the treatment for breast cancer. At least with bc, once the first year of surgeries, chemo and rads is over with, one can get back to some kind of normality, but Crohn’s is always “in my face”!

Val - my husband always goes with me to hospital appointments thankfully - he even sat through the chemo treatments, quietly reading a book in the next chair. We are both retired, so it is not a problem, and we usually try and make a day of it and have lunch in a decent restaurant in Plymouth. He really is my guardian angel, doesn’t say much (only child syndrome) but understand absolutely my health problems and is so supportive both physically and emotionally. I know how lucky I am, especially when I read on this forum of some partners who seem to be in denial of their partner’s serious illness. My gastro obviously feels that Ted is supportive, as he asks him, at the end of our consultations, if I have missed anything out. As my situaton is rather complicated, it saves me having to try and remember what the gastro said, as I usually can only take in about half what he says. He uses medical terms that I have never heard of. In fact he made us both laugh at my last appt, when he asked me to read out my C-reactive protein level from my blood tests…I said: “what does 10 mean?” - he smiled and replied:“One less than eleven, one more than nine.” At least he has a sense of humour.

I’ll come back after I have seen the gastro.

Thanks again,
love,
Liz.

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Hi all - just a quick update (as if I could ever write one!)…

Saw my gastroenteroogist yesterday who was shocked I had lost another 10 lbs since I last saw him on Aug 1st and finally got some action. He is urgently referring me privately to a gastro-surgeon,as I don’t think I can wait for an NHS referral, to discuss my surgical options. Gastro physician thinks I will need a partial resection of the small intestine as it is grossly inflamed, hence the high white cell count, and stricturplasty on the 2 known strictures. The low red cell count is due to bleeding in the small intestine. He said I will most probably need a colonoscopy before surgery, although he was kind enough to say he hates to put me through that dreadful prep. I asked if an MRI would be suitable and he said he didn’t think so.

I asked if I could have the surgery done in the Nuffield Hospital but he said they can’t do complicated surgery and I will be much better off at Derriford, which is now part of the Peninsular University Medical School. Interesting, in view of the current “top up drugs” situation, that I can see Mr. Dourie (the surgeon) privately, and then immediately be referred back on the NHS for the surgery. I just don’t get NICE (or NASTY) at all. To my logical mind, it is a conundrum.

Whilst I am on here, can I ask if anyone has had small white lumps around their scar tissue?
My affected breast (after lumpectomy and total axillary clearance) has lymphoedema,at least 2 cup sizes larger than the left breast, but not thankfully in my arms. I am not due to see my bc surgeon until Feb 2009, and don’t know whether to see my GP…my bc nurse and Oncologist both retired last December and I haven’t been assigned replacements. I showed these to my oldest friend who was here for the weekend and she said I should get them looked at, but hate to be thought a hypochondriac. Perhaps when I am in for the gastro surgery I can mention it then and get someone to take a look?

Hope everyone is well.

love,
Liz.

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Dear Liz, I hope something can soon get sorted for you with the wretched Crohn’s disease! I know how debilitating it can be (let alone with the bc factor) as my son was diagnosed with it 3 years ago. He was recently hospitalised with a bad flare and put on intravenous steroids after having lost 2 stones in as many weeks. He was discharged on a high dose of prednisilone (12mg) and all the other usual stuff, which amounts to a virtual mountain of daily pills! Sadly none of this ever seems to completely alleviate symptoms, and his gastro is thinking about an alternative treatment with Fliximabub(sp?). He is only 28 years old, and still lives at home, his confidence having taking a real battering with the constant diarrohea and physical changes caused by the steroids. He has food supplements, not fortijuice but Ensure to help bring his weight up. Unfortunately he has to pay for all his prescriptions and the sick pay he gets from his job is ludicrously low!

Anyway, I just wanted to show you some support, knowing, as I do, how Crohn’s has affected my son’s life, and wish you well with your surgery and further treatment.

Gentle hugs

xxx

PS I have a ton of size 8 clothes which I can’t get into anymore since my bc treatment - probably the Arimidex - has caused me to put on 11lbs!!

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Hi Lizzicie

Thanks for the update. Good luck with all your sugery and treatment sometimes it is all so draining. I have finished all my treatment so just have to adopt a ‘wait and see’ attitude. >>> to you

Take care.
Val

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Hi just me,

how wonderful and so conforting to hear from someone who understands, and has to deal with, albeit their son, with this dreadful disease Crohn’s. I so feel for you and your son. Has he joined the UK National Crohn’s and Colitis Association? I was a founder member some 35 yrs ago…it is only £10 a year for membership and worth every penny. He can be put in touch with other people his own age which I believe may help him.We also get a “Can’t Wait” card which we can use in high street shops…and I get an upgrade on British Airways to Club class, as I need an aisle seat near a lavatory. Will tell you a story about that one day.

Infliximab…beware…my gastro, and I have seen some of the top Gastros in London…will not prescribe it for me…he said it is only useful for fistulising Crohn’s, which I don’t have. I found methotrexte on the internet some 7 yrs ago, and it is still not licenced for Crohn’s, but is available off licence for Crohn’s. I had some wonderful remission free years on it recently, now on the maximum dose of 25 mg injections weekly that I do at home…sadly my problems are not contained by it, but I am 64 yrs old, and have had Crohn’s for 40 yrs, so lucky not to have had resections…I always knew the day would come, been told so many times, and the denouement is now here. I am so ready for it…I need my life back and medications will not sort out the strictures of many years of inflammation and adhesions.

Interesting that your son was only put on 12 mg of prednisolone…when I was dx in 1970 I was on 60 mg a day! Gastros don’t do that anymore, but there was little knowledge then, and it was the only drug available…luckily we now have immunosuppressants like methotrexate and cyclosporin .

If I can help in any way with your son’s problems please let me know… you can always private emai me.

Liz