Purple/red bruising on left back, rapidly spreading

Hi - wonder if anyone can help before I call NHS Direct tonight …I have an appt with my GP tomorrow lunchtime, but the problem seems to be getting out of control.

Quick synopsis…last weekend I felt a tender spot around the bottom of my left shoulder blade, like a bruise. Hubby looked…3 cm red line…today the area is purple and red with about 8 different lesions that look like bleeding under the skin, now some 10 cm wide. He has taken a photo. I had a similar problem on my inner thighs and lower abdomen when in Spain late August. GP said she had only seens these kind of lesions with meningitis, which I did not have, googled my symptom and said it was “mountain sickness” and she didn’t even know I had been in a car up a mountain some 7,400 ft! I think she said I had peripheral purpuric oedema. I have tried to Google the symptoms, but mainly come up with childhood problems and leg/ankle problems. Can’t find anything on shoulder blades or lungs.

If Lisa’s Mum Sue sees this, can she tell me, if it is not too distressing, what Lisa’s lesions were like on her back? Besides the “bruising”, the area is puffy and full of fluid.

I am due to go into hospital next Tuesday for a colonoscopy for strictures and severe inflammation in the intestines…already had a small bowel follow through last week that showed multiple strictures (largest 15 cm) in my small intestine, but private surgeon said he doesn’t want “any surprises” when he operates and does stricturplasty, if possible, of the narrowings and/or resections of the small bowel. I didn’t mention my bc concerns, but should have. It was an hour long consultation with a sigmoidoscopy and I was struggling to take in all he said.

My symptoms over the past 5 months have been synonymous with breast cancer mets to the intestines:
weight loss of some 20 lbs
total loss of appetite - living on 4 bottles of Fortijuice daily, and some white wine.
nausea
steattorhea - stools floating when I manage even home made blitzed soup.
Severe lower abdominal pain on rising, as early as 5 am.
Gastroscopy in Juy 08 showed multiple ulcers.
CT scan July 08 showed severe inflammation around terminal ileum
MRI Nov 07 showed strictures.

NHS Gastro was not concerned in July, although I was, until I saw him in October with big problems with my bloods - bone marrow, (probably due to the methotrexate chemo I inject each week for my Crohn’s), anaemia, high lymphocyte count, etc. etc. and referred me to a gastro surgeon whom I saw at the Nuffield a whole month later as gastro did not ask for a private appt. Surgeon has pulled out all the stops and tests are undergoing, but I am deeply concerned about bc mets to the GI tract - it is rare, but considering I have had Leishmaniasis (caught when I lived in Spain and fed an abandoned dog who had it), erysipelas twice and Mondor’s disease, I know I have crappy genes. I googled bc mets in the GI tract and found an article by Mayo clinic that seems to correlate with my current symptoms. I did ask my gastro in July when I had the gastroscopy if he had heard of this rare problem, said he had but not come across it! End of conversation!

Does anyone have any advice tonight? I feel my body is falling apart, I only weigh 6 st 10 lbs, have an 80 yr old husband who desperately needs me. He has been having blood in his urine for 3 months now and burning on urination. Useless GP (ageism?), now on his 4th course of antibiotics and has a kidney scan next week. Jeez, can it get any worse?

This forum is the only place I can think of coming to…my bc dx was Jan 2003, idc 2 cm, stage and grade 2, 3/18 lymph nodes malignant. WLE, total axillary removal, 6 x FEC, 6 weeks of rx, now on exemastane. Had to discontinue bisphops, although osteopenic due to 30 yrs of steroids, because of joint pains.

Any advice or help is so welcome.
Liz.

Hi Liz

I’m so sorry to hear about your most recent symptoms – I don’t have any experience of skin lesions or Crohns (have relatively stable bone & liver mets), but wondered if you might be able to contact your GP’s surgery & get the evening duty GP’s phone number – it does sound like you’d be happier seeing someone tonight than waiting until your GP appointment tomorrow afternoon. Your medical situation is quite complex, so it would help if the evening duty GP had access to your notes. Or . . . do you have a link with a Mac nurse or someone at your local hospice who might be able to see/reassure you tonight?

Sorry these are only vague suggestions, but of course we all know that feeling of panic when “something strange” & unexpected happens to us – hope you can get some support tonight.

Marilyn x

Dear Liz
I can’t offer any advice on this except to agree with what Marilyn has said and see if you can get a telephone number for the duty GP. I just wanted to say that I am thinking of you going through this really worrying time. I’ve suffered problems with my gut in the past and the doctor thought I had a mild case of crohns disease but I think it was more like a dairy allergy/intolerance and the steroids whilst on chemo sorted it out. I just wanted to send you a big, gentle cyber hug and hoping that things will get sorted and it won’t be anything sinister - I know that reading stuff on the internet can really get your mind going round and make you believe the worst when there are actually other reasons for these things.
Thinking of you - you’ve had so much to deal with and it’s so unfair.
Ruby xx

Thank you Marilyn and Ruby for replying…I have calmed down a tad now. It really has helped to hear from you both and get things into perspective. I am very wary about ringing our GP’s out of hours service…had to do that when I got vasculitis in my arms and legs when on FEC chemo, and the locum has to come all the way from Truro and get a local Responder to guide him to this isolated Fort I live in. It just seems like too much trouble for everyone. I had a small stroke a couple of years back, was unconscious and it took the paramedics 45 mins to get here. I was taken to A & E at 10 pm by ferry and although I saw a Neurologist in the early hours of the morning, they didn’t even do a brain scan. He just checked my vision and could move my hands.

I guess what really worries me is bc mets…I had a big fall out with my first Oncologist who told me in no uncertain terms I would die of septicaemia if I continued to take methotrexate for Crohn’s whilst having FEC. After 2 consultations, when I fled the room in tears, I refused to see him or have chemo until I got a second opinion from the IBD hospital, St. Marks in Harrow. I eventualy got a part time GP who worked in the Oncology Suite one morning a week and we sorted out a plan of daily dexamethasone and Fortijuice drinks - no solids for 6 months! I eventually did see their senior bc Oncologist when having rads, but he discharged me, unbelievably, when rads finished. I have only seen him once since then, 5 yrs, for a private HER2 test. He has now retired and I have not been assigned another Oncologist, which I think is disgracefu. Luckily I have a great bc surgeon, and although I was NED at my 5 yr review last February, he said he wants to see me again next Feb, although he said he should discharge me. My bc nurse, who was so supportive with my complex problems. also retired last Dec, surgeon said they were trying to recruit 2 new bc nurses, and I haven’t heard a word, so don’t feel I have anyone to turn to on the bc front. As I don’t have dx secondaries, I have not had any contact with McMillan nurses. I do see my GP’s nurse each month for blood tests for Crohn’s due to the weekly chemo, but she really doesn’t know anything about breast cancer.

Guess I will go to bed now and see the GP tomorrow and have her eyeball these lesions. I am normally a very upbeat person, having lived with Crohn’s for some 38 yrs and many hospitalisations, but at the moment I just seem to have so many problems that no-one really is sorting out, except my new gastro surgeon. He is hoping to do the surgery in December and I hope then I can back to whatever normal is.

Thank you both sincerely for caring and sharing.

Liz.

Just a quick update…saw my GP today. she said I have “spontaneous bleeding” in my back and not sure what is causing it.Well, to paraphrase Mandy Rice, “she wouldn’t would she?” When I came back from Spain in late August I had the same problem in my upper inner thighs and lower abdomen that she said was due to “mountain sickness”. Somehow I don’t believe her - I live in a Fort at sea level for heaven’s sake. am to go for blood tests tomorrow morning for “clotting”. She said my platelets are fine, but white lymphocytes are highly elevated on the normal monthly blood tests done last Monday. I asked if my 8 yrs of weekly methotrexate is the problem…she looked up the side effects in her book and said, yes, and it can also cause lymphoma. Just what I need. I asked if I should discontinue my weekly injections that I do at home and she said I need to contact the doctor who initially prescribed it - he is dead! I tried to contact my gastro who is currently prescribing it, got his secretary’s voice mail, and then rang the IBD nurses, got voice mail again.

Don’t you just despair at times at the NHS? I know I do.

Well, tomorrow is another day when the sun will rise and I WILL sort this problem out.

Liz.

Liz - you poor thing. Sometimes I feel it is DIY health care. really hope you can get some answers tomorrow.
Kate

Lovely to hear from you Kate - I have been following your threads and so pleased to learn you are home now. I sometimes wonder where we get the strength to carry on - I feel like going under the duvet and staying there!
loe,
Liz.

Hi Liz,

I have experience or anything I am afraid, but I wanted to post to say that I do hope you find an answer to this soon. You are going through such a lot and my heart goes out to you in having to deal with all this on a day to day basis for such a long time, you must be one heck of a fighter!!

Fingers crossed for a quick and simple solution for you,

Best wishes
Nikki

Hi all,
my specialist Inflammatory Bowel Disease nurse rang me Friday and we had a long chat. She said this bruising/bleeding could be caused by the methotrexate, so to discontinue it pro tem. My gastro is doing the colonoscopy on Tuesday so he will be able to take a peek. He will be taking biopsies of the ulcers/abscesses in my large bowel and I am going to ask him if they can be tested for bc mets…just to be on the safe side. I have a private appt with the surgeon on Dec 9th, if the histology results are back, to decide whether I am having just stricturplasty or resection of the affected parts,so hopefully can move forward and have the surgery before Christmas. I’m on a 3 day clear liquid diet (chicken broth, ginger ale and lemon Fortijuice) and take the dreaded Picolax tomorrow so not looking forward to spending all day on the loo!
Thanks to you all for caring.
Liz.

Hi Liz

Glad that someone has come up with an explanation that sounds plausible.

Good luck tomorrow - I remember the Picolax effect only too well!!

Kay xx

Hi all - just a quick update.

Colonoscopy was a bit weird - my gastro had set up an IV stand in the operating theatre and I had 4 bags of fluid as he said I was dehydrated, and also need 7 days in hopital to have Total Parenteral Nutrition feeding by a tube in my chest directly into the bloodstream. My gastro has talked to a Consultant Haematologist about this darned bleeding/bruising (now in my toes!) and they think it may be Vitamin K deficiency - never heard of it. Something to do with having a damaged gut and not being able to metabolise this vitamin which affects coagulation of the blood. I am seeing the haematologist in the morning as I now have a date, Jan 5th, for surgical resection of the last part of my small intestine and first part of the colon and we need to get this blood problem sorted beforehand. He is taking some 25 cm out. The surgeon said he will send the abscessed tissue to pathology to check for bc mets. I am praying it is just my Crohn’s and not something to do with bc, but knowing my luck, could be.

We have friends coming to stay at our little holiday apt here for a week over Christmas, and I am trying to get everything organised so my husband (80 yrs old and disabled) can cope with the Christmas Day meal. No turkey - a simple loin of venison that takes all of 17 mins to cook in the oven, and our female friends hopefully will help with veggies and clear up.

I have not been out of the apt for over a week due to severe diarrhea even though I am only eating home made soup, a bit of bread and cheese once a day, plus having the Fortijuice drinks. Surgeon says I will be a “new woman” after the surgery, so hope hubby likes the new one as much as the current one!

Thank you all for your support.

Liz.

Hi Liz,
Glad to see you posting - you really are going through the mill but i am glad the surgon is going to operate in the New Year. Can’t offer any advice although I know vit K is something they test new born babies for - not sure why though. Anyway sending good wishes and hope all goes well on 5th Jan.
cheers
caroline