MRSA in my ostomy site

[Kip]

I had to go back to the hospital yesterday as I have MRSA in my new stoma site. I had to have the infected tissue cut out and burnt yesterday, no antibiotics as I have an anaphylactic reaction to most of them. Unfortunately as I have myelodysplasia, the ideal antibiotic would drop my white cell count too low as it is only 1.1 at moment and I would be unable altogether to fight infection.

Stoma very sore and raw today but looks healthier than it did. 2nd down day since surgery 8 weeks ago (bowel and bladder resection and formation of stoma). Feel vulnerable today as well, have had my freedom by having the surgery and regaining my quality of life and not had any setbacks at all other than losing my partner of 9 years and my job same week that I had the surgery. Got my head around my surgery and the life changes very quickly as had no other choice as I was given hours to live at time of the surgery..................Now I have tasted freedom I do not want to give it up, feel resentful towards my stoma for the 1st time.

Realisation that I am human after all, what am I do with my superhero cape now, save it for tomorrow when I know things will look up again.

Just wanted to share that with you.

[icjen]

Sorry for all that you are dealing with right now. You are a very strong woman to have such a good way to view life in such a rough time. We're always here. I wish you a quick recovery.

[Kip]

Thank you this site is good for that.

Feel better already.

What I have realised is that I am a very patient person with everything and everyone but now and again I get very impatient with myself, I want everything better immediately which after feeling so unwell prior to surgery and happened immediately afterwards, I have to actually remind myself that it is ok to have a wobble every now and again, I feel so much better, it's amazing..

[ICNDonna]

I'm so glad you are past the worst of it. And I hope you will be feeling that freedom again very soon.

Sending gentle hugs,
Donna

[Imustpee]

I also had a MERSA infection in my pouch a month after surgery...I was on I.V. antibiotics through a PICC line in my right arm, 4 hours a day for 6 weeks....hang in there...the worst is over, and your freedom will be back...

[Kip]

Thank you for your support, having a down day is not any near as bad as it has been in the past now I can at least admit when I am having one, my friends and family have been amazing support throughout the past few weeks, I am glad that I finally let them in.

Advice to the strong stubborn types, even we can let mere mortals in and it doesn't make us any less strong, in fact we are stronger because we can let those mortals in and they are too as they realise that even the tough ones on the outside have a soft centre

[Imustpee]

Kip, don't you just LOVE your pouch? I have been able to do more things in the last 3 weeks ( Now that all my post op comps are over) and I feel GREAT...I have never felt GREAT..I was ALWAYS so tired and miserable...not anymore!!! Having my bladder removed was THE BEST thing I ever did!!!!!!!

[Ginny]

I'm so sorry you are going through so much. Hope things turn around real soon. You sound determined. Hang in there.

Ginny

[Kip]

Hi Lesa,

I don't have a pouch they were unable to do that as I have severe Chron's disease. I also have a severe latex allergy (results in anaphylactic shock) Had two anaphylactic reactions as I was wheeled out of theatre into recovery and then another an hour or so later in recovery. Ended in ITU, ironic to have survived the surgery against all odds only to have two life threatening shock reactions.

Anyway, they had to radically change my surgery so i don't have a typical stoma with a bag, I have had an internal plastic channel placed between the bladder and bowel, and the urinary diversion made via an external stoma site with a catheter then being placed through the stoma passing through the tube into my resected bladder. Initially I had a bag but in order to attach it to the stoma, the dressings required were made of latex and there are no current alternatives, so that was not a satisfactory way to attach it. My consultant pioneered a new surgery for me in order that my bladder could be drained, so now I have a tube coming through the stoma with a valve on the end which I empty when I need to pee, it's amazing!!!!!
:woohoo:

Thank you Ginny for your support, I am very determined and stubborn lol

[mum43]

:hi: Hi Kip,
Hope you don't mind me asking, but which hospital did you have your op at?
You can send me a private message if you prefer to.
I am having a bladder removal soon and am curious as to whether I might have met you in a urology clinic in London?
You don't have to answer if you prefer not to ok.
Take care
mum43:bonk:

[Imustpee]

Kip, your surgery sounds amazing!!! What a great dr you have to do that for you...I am so happy for you!! It took 8 months for all my complications to resolve, but we all will heal at our own pace, and follow our own paths to recovery...you will be back up and running in no time...take this as a chance to rest up a bit longer and get your strength back because you are going to need it!!! I started working again 2 weeks ago( After IC forced me to quit May 05) AND I am going to college in 2 weeks to become a medical assistant!! I hope to work in a uros office...I am thinking of you, and I hope you feel better soon! :smile tee

[Kara29]

I love Surgeons that can find thier way around any problem. I had two of them over the past 7 years! I am so awe stricken by your surgery WOW!

Kara:smile tee

[Kip]

Hi Mum 43,

I don't attend a urology clinic as such because I am neutropaenic (White cell count abnormally low risk of infection) so generally I see my consultant as an inpatient or I see him at Harley Street, as I work in Cavendish Square and Harley Street is the next street to where I work, I am able to turn up anytime. I have my consultant's mobile (cell) number and call him as required. Where is your care located?

Kip

[Kip]

Hi Lesa,
Good luck with everything. I am now back to being a superhero again with my cape flying in the breeze. It's amazing how actually acknowledging the more vulnerable side of you gives you further strength to deal with things rather that bottling everything up.

I had not told any of my friends what was happening re: My health, until the night before my life saving surgery. I had lived with my condition almost in secret, feeling unable to share it with friends my own age, not because they would react badly, I just wasn't ready to share it. My friends have been fantastic, asking to see my stoma site and how does it work, what can they do to help me etc.... I even sat and cried and sobbed with a couple of them when I was feeling down at the beginning of this week, which is something I would never have done regarding me before my surgery, I would have cried in private. I cry over girly things like Lassie and babies being born but not about my health. I have realised that you do go through a mourning/grieving process with a long term condition, for the life you had before, even if you can no longer remember how that life really was. I am 9 weeks today since my surgery, today I do not resent my stoma, I embrace it, however with most true friendships/relationships they are not plain sailing and I know I will encounter a few rough patches, the great thing is I am no longer alone with this condition that makes you feel lonely as I now have allowed my wonderful friends into my secret world.

If I am now sounding like a rambling eccentric English woman, I apologise but I am sure everyone with this condition has lived in a secret place with it at times.

Enough words for today, I need to get some fortune cookies for further inspiration.

Thank you all for your support

Kip

[Kip]

I love Surgeons that can find thier way around any problem. I had two of them over the past 7 years! I am so awe stricken by your surgery WOW!

Kara:smile tee
Thank you Kara, hope you are doing ok

Kip

[redfearn]

:pray: Kip--

I am scared to death now...I also have Neutropenia
with a very low white blood cell count....this is why I had to have my interstim out--I would not heal...I am having an Indiana Pouch on October 17th. Just found out that my bladder capacity went down from 325cc's to 35cc's.:toilet: I developed a severe kidney infection while visiting my Mother in Florida this past week, and the ER visit ended in them doing a Cystoscopy and finding this really low cc. I cannot take the pain...it is AWFUL!!! Anyway, I also found out via a scan of my abdomen through contrast that I have a mass growing off of my right fallopian tube and many, many ovarian cysts. I had a hysterectomy in 2004, but they left my ovaries in...So, now I am even more scared...but it gives me great hope that there are so many that are worse off than myself and they have healed. Hang in there, and keep me posted...You are definitely in my prayers!!!!
:)
Laura

[Kip]

:pray: Kip--

I am scared to death now...I also have Neutropenia
with a very low white blood cell count....this is why I had to have my interstim out--I would not heal...I am having an Indiana Pouch on October 17th. Just found out that my bladder capacity went down from 325cc's to 35cc's.:toilet: I developed a severe kidney infection while visiting my Mother in Florida this past week, and the ER visit ended in them doing a Cystoscopy and finding this really low cc. I cannot take the pain...it is AWFUL!!! Anyway, I also found out via a scan of my abdomen through contrast that I have a mass growing off of my right fallopian tube and many, many ovarian cysts. I had a hysterectomy in 2004, but they left my ovaries in...So, now I am even more scared...but it gives me great hope that there are so many that are worse off than myself and they have healed. Hang in there, and keep me posted...You are definitely in my prayers!!!!
:)
Laura
Hi Laura,

Is your neutropaenia treated? I have regular GCSF if my count falls below 1. I have myelodysplasia, which causes my neutropaenia (dysplastic and not enough white cells), my platelet count is low and my red cells making me iron deficient anaemic. Don't worry about your count I have been neutropaenic for 6 yrs now and got through very difficult surgery. If you count is low then speak to your haematologist and ensure that your urologist has a plan of action prior to your surgery regarding your treatment. If your count is below 1 then you can go on a course of GCSF to bring it up, but your haematologist will advise you further.

If I can do it you can good luck

Kip

[redfearn]

Kip--

My urologist is aware of my neutrapenia, and he is going to give me high doses of steroids after my surgery to promote healing...also he is going to be giving me lots of protein, and iron via a feeding tube to ensure I have everything to make me better fast. I'm not sure of what you are taking--let me know. I am also going to Duke University after my surgery due to my blood levels---my hematologist wants me to get checked out everywhere b/c my WBC keep dropping. Duke is like a huge medical school with lots of Doctors who specialize in this disease. We'll see how it goes.
:)
Laura

[Kip]

Hi laura,

I would get a second opinion regarding steroids post op as they actually delay healing not promote, equally steroids can have an impact on your immune system as well, making you more susceptible to infection, so would be good to check what he plans on giving you, what dosage and for how long.

Regarding my treatment for neutropaenia, I have sub cut injections of GCSF (Granulocyte Colony Stimulating Factor) This stimulates the bone marrow to produce more white blood cells, in particular neutrophils. Have you had a bone marrow biopsy yet?

The problem I have with my neutrophils is
1. I don't produce enough
2. The ones I do produce are of an abnormal shape (dysplastic) so are not effective

The side effects of GCSF are bone pain, risk of anaphylactic allergic reaction, and an increased risk of developing leukaemia.

I don't have it regularly now to minimise the risks to me, I have it only if I am due surgery or an invasive procedure

For my iron I have IV infusion dependent on how low my iron stores are (ferritin levels rather than haemoglobin).

Good luck

Kip

[mum43]

:hi: Kip
I have been seeing a urology professor at the UCLH.Euston road!!!
They work as a team there as you probably already know.
They look after me very well and have given me pager no's so that I can bleep any of the team at any time for help if I need it.
If you want names of the team I can private message you let me know ok.
:smile tee