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IrnBruLover
New Member


Date Joined Jan 2008
Total Posts : 10
   Posted 1/16/2008 10:28 AM (GMT -7)   
hi Every1,
            plz bear wif me as im new 2 this it all started june 2007 when i started having pain in tummy and bleeding from rectum, Went 2 docs endlessly about it and they put it down 2 IBS they gave me medicines and diet advice :(  ( still in pain and bleeding ) finally doc referred me 2 see a consultant at nearby hospital he booked me in  a Colonoscopy dec 24 2007 told of possible tumours causing resrictions in bowel. Merry Xmas 2 me :(. Since then they have done biopsies which shown cancer. Had CT and mri which revealed a large tumour which is in rectum only.Surgeon enquiring wif specialists about radio/ chemotheraphy. Complication is the restriction-pain make treatment difficult he recommends a temporary Colostomy bag. he wanted 2 do another camera 2 see how much of a restriction there was i had that 2day ( 16 jan 2008 ) he told me i wudnt be able 2 cope wif treatment as things stand he spoke wif radio/chemo specialists and she wanted the results of my camera thing i had done i have appt wif the radio/chemo doctor 18th Jan 2008 2 discuss the next step.When they told me bout the cancer i cudnt take it in maybe it was denial idk i broke down and cried till no more tears came on sunday i think it all sunk in then but i felt better when i saw the doctor at hospital and was told it hadnt spread hich was a relief in itself and also i know wots install 4 me i just gotta stay focused and positive all advice is welcome and i wud like 2 chat bout it rather than hiding in a shell.
 
 
A Positive mind is a gd mind.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/16/2008 10:30 AM (GMT -7)   
Just wanted to send (((BIG HUGS))) your way. I will definetly keep you in my prayers.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


IrnBruLover
New Member


Date Joined Jan 2008
Total Posts : 10
   Posted 1/16/2008 10:38 AM (GMT -7)   
Thanx. I feel little better getting it off my chest so 2 speak and wif poeple who understand.

Sugarmarie
Veteran Member


Date Joined Jul 2003
Total Posts : 1205
   Posted 1/16/2008 12:48 PM (GMT -7)   
OMG how terrible I have said a prayer for you. How old are you and how long have you had crohn's? when was your last scope all these thing are important to us since we are all at high risk, this info will also help those that keep putting off getting a scope.
gentle hugs,sm
Confucius say : He who goes to bed with itchy butt wakes up with stinky finger.

Words of wisdom: Never trust a fart

:) Sugarmarie A.K.A. Poopy Pants :)


IrnBruLover
New Member


Date Joined Jan 2008
Total Posts : 10
   Posted 1/16/2008 1:25 PM (GMT -7)   
Thanx 4 all ure replys. Im almost 38 few weeks time. The 24th dec 2007 was the first time i had the colonoscopy that was 2 find out wot was causing me great pain and blood in stools. As i dont have crohn's ive never needed a scope b4 but 2 answer ure point the scope was not uncomfortable as it sounds.

The doctor warned me i wud feel lots of wind - I warned im not 2 get his face 2 close :)

mcleaver1969
Regular Member


Date Joined Jun 2006
Total Posts : 267
   Posted 1/16/2008 1:30 PM (GMT -7)   
Wow, I am so sorry to hear about the cancer, and on X-mas eve of all times! Please stay strong and focused, have your breakdowns when you feel overwhelmed but then get right back up again and stay on top of your treatment. If you have questions ask your doc's, they are there to explain everything to you. You are in my thoughts and prayers, please let us know how the treatment goes. Take care of yourself.
Marci, 38 years young, Rockledge, FL
Dx with Crohn's disease March 2006
Currently on bi-weekly Humira, daily 6mg Entocort, daily 2-3x 5mg hydrocodone (for pain), and daily 75mg Effexor,
plus 3x per day heavy iron supplements for anemia,
calcium supplement, daily multi-vitamin,
Lasix as needed for ankle/feet swelling
Self-proclaimed "recluse"  do to CD  ;)


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 1/16/2008 3:08 PM (GMT -7)   

IrnBruLover
Hello, this is Kitt and I am here for you. From the time the physician tells you  that you have cancer in his office most people do not hear anything said after that. It is like shock, your mind just stops at the word cancer. I am glad you now understand what is going on and what is in store for you.

Please remember you always have the right to a second opinion and any time you go to see your physician, write down your list of questions.  I hope you have a good physician and that you have a trusting relationship with him.

We are here to support you and to listen to you, so don't stop posting.
I am posting the address of a online Cancer Support forum you may find helpful too. Being educated is your best defense. Prayers for you too.

http://www.cancercompass.com/message-board/message/all,2256,0.htm


 
Kitt, Co-Moderator: Anxiety ~ Panic  ~ Crohn's
*~* http://www.healingwell.com/donate *~*
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~
 


IrnBruLover
New Member


Date Joined Jan 2008
Total Posts : 10
   Posted 1/19/2008 7:10 AM (GMT -7)   
Hi Every1,
I saw the radio/chemo doctor yesterday she says i need 5days a week for 5 weeks radio/chemo im having chemo tablet form idk wot its called sry and then a 6/7 weeks break then another scan if all goes well they cut the tumour out she also told me i widnt loose my hair which i was happy wif i have 2 get a stoma bag fitted next week just waiting on phonecall 2 say when they said cos of restriction in rectum i wudnt be able 2 handle the treatment cos it swells tumour b4 it shrinks and im in a lot of pain atm as u wud know.Also my daughter broke down for the first time other night she kept crying saying i want my normal mummy back i havent kept anything from her i feel she has 2 know everything thats going on shes almost 12 she understands wot it is and wots happening but i dont think she realizes how serious it is but i dont wanna scare her by saying it is i gave her lots of kisses and cuddles and told her mummy isnt going anywhere and ill be better soon.

Am i right in telling her everything i know or shud i protect her?


I will keep u all posted on wot happens next week

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 1/19/2008 10:25 AM (GMT -7)   

Hey there, Hi, good to hear from you.  Sounds like your plan is all set out and now we all pray very hard for everything to work out well.

Your daughter is 12 and you are obviously very close.  I would answer her questions with honesty and let her know you are scared but don't over answer her questions.  She is still young and to much info may frighten her. Reassure her that you have great faith that your will get better as you do have faith  and so do we.  I know the treatment is tough but there are so many success stories and I feel you will be one of the good outcomes.

Gentle Hugs to you and keep posting here.  We are your online family.


 
Kitt, Co-Moderator: Anxiety ~ Panic  ~ Crohn's
*~* http://www.healingwell.com/donate *~*
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~
 


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 1/19/2008 4:35 PM (GMT -7)   
At twelve your daughter would find out if you tried to keep secrets and then she would have to deal with her knowledge alone. If you tell her the truth but gently and let her know that you have confidence in your doctors and your treatment she will be more comfortable.
Let her know that there will be days that you don't feel well and that might make you short tempered but that you will try not to take it out on her-then apologize if you do.
Let her know what she can do to help then expect her to do it-that will keep her from thinking she has to completly take on your role.

Mostly I'm sure you know this already because you love her.

IrnBruLover
New Member


Date Joined Jan 2008
Total Posts : 10
   Posted 2/15/2008 1:33 PM (GMT -7)   
Hi Every1, sry not been on recently I have just spent last 3 weeks in hospital

When I went into the hospital 2 have a stoma done they wudnt operate cos i caught pneumonia. I had to have antibiotics thru a drip 4 a week before they changed their minds and decided to do an ileostomy rather than a colostomy.

When I woke up I was in a lot of pain, the stoma was producing a LOT of stuff and filling up 6n or 7 times a night - it even made the bag burst twice one night, and I am very unhappy with the nurses on that occasion - they said that was normal, but 2 days after the surgeon decided to operate again to find out what was wrong. It turned out he brought out wrong part of the bowel so he had to cut off the old stoma and do it again. That done, the doc admitted he done a mistake and I thought omg how can this happen??

Anyhow I got that op and I then got a twist in my bowel omg!!! the pain was unbelievable. It took them almost 4 days b4 they took a xray and found that out :( . Cos the doc done the op again I have a scar (like a laparotomy) going down my tummy which was weeping and has gaps in it now (hubby told me this) I cant bear 2 look at it makes me feel sick. The district nurse came today to change the dressing on the wound she was a bit shocked when she saw it but as they always tell u it will be fine ( somehow i dont believe them ).

Im doing ok at the moment - I just feel a bit tight and uncomfortable but I know this will pass. On Monday I have to go to get a tattoo thing done in preparation for the radiotheraphy. I havent received any dates as to when I start treatment.

Thats the update so far. But im staying positive - it's only thing keeping me sane - but i have all the love and support from my family which helps me a great deal as I have been very emotional when I was in hospital just kept asking myself why me? why cant I just have it straightforward? But you gotta roll with the punches in life, there's no point in saying why me it wont change anything. Anyhow I feel a bit better physically and emotinally at the min.

Take Each Day As It Comes :)

Sugarmarie
Veteran Member


Date Joined Jul 2003
Total Posts : 1205
   Posted 2/15/2008 3:06 PM (GMT -7)   
OH my Dear you have been through so much. I have lifted you up to God and asked him to wrap his loving arms around you.
sending you hugs and blessings, sm
Confucius say : He who goes to bed with itchy butt wakes up with stinky finger.

Words of wisdom: Never trust a fart

:) Sugarmarie A.K.A. Poopy Pants :)


bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 2/15/2008 5:01 PM (GMT -7)   
You're being very brave with everything you're facing. I'm glad to hear things are slowly improving - you deserve it!

Big Hugs,

Bev

dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 2/15/2008 5:41 PM (GMT -7)   
Dear Irnbrulover, firstly I'm so sorry to read about your situation, and I send my best wishes.

Secondly, I noticed that you spelled mummy the English way. So I was wondering if you were British. The reason
I ask, is I'm from the UK originally.
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 2/15/2008 5:42 PM (GMT -7)   
good luck. stay positive
randynoguts 



     http://www.geocities.com/randynogutsweb/


lil-momma
Regular Member


Date Joined Feb 2008
Total Posts : 132
   Posted 2/15/2008 7:06 PM (GMT -7)   
I wish I could reach through this computer and give you a hug. I'm so sorry for all you've been through and what you still may have to face. My prayers are with you and your family. Much love to you!!!!!
Mother to 15 yr old daughter diagnosed w/CD 9/07.  Had col & endo in 9/07, small bowel follow through 11/07, surgery for abcesses 11/07.  Curently taking multi-vit, iron for anemia, bentyl prn, prilosec 20mg-x2, pentasa  500mg-x5, entocort-x3, 6 mp 50mg-x3.....still not doing well.


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 2/15/2008 7:32 PM (GMT -7)   
Whatever you do, do NOT keep this secret from a teenage child! The damage you could do would be far worse than her fearing for your life!
Anyway, a <PRAYER> for successful treatment & a complete cure.
BTW, have they staged your cancer yet?

Sincerely,
Matthew

karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 2/16/2008 7:42 AM (GMT -7)   

I am so sorry to hear of your diagnosis. My mother had surgery for colon cancer jan 2007. She is why i ended up with a colonoscopy and now know I have Crohn's. She is doing well so don't give up hope and keep fighting!!!!!

((((hugs)))))

Karen


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On 150mg Azathioprine (generic Imuran), Pentasa, & Entocort (take zofran for nausea now)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Also have Arthritis, and feel like I am falling apart sometimes...


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 2/16/2008 10:04 AM (GMT -7)   

IrnBruLover
Hi, this is Kitt.  You are in my prayers and in my heart.  I come from a family with a long history of cancer so I have seen most of them as well as being a nurse I am familiar with cancer. 
I think you have a right to be very scared and coming here and talking is a wonderful way to let out those feelings.  Your whole life has changed and you are rising to the change by holding onto your faith and fighting back.
I am so sorry for the mistakes made in surgery.  Please remember to be your own advocate..............and I am so glad your hubby is with you.  I wish there was more I could do for you. I have witnessed some great miracles when it comes to cancer so don't you dare give up. 
Please let me know what I can do for you?
Many gentle hugs coming your way and please know I truly care.
Kitt


 
Kitt, Moderator: Anxiety ~ Panic  ~ Crohn's
*~* http://www.healingwell.com/donate *~*
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~
 


IrnBruLover
New Member


Date Joined Jan 2008
Total Posts : 10
   Posted 2/20/2008 2:05 AM (GMT -7)   
Hi,
Thank you all 4 ure support and understanding in wot im going thru im slowly feeling lil better everyday im still very tired and weak i start my radio/chemotheraphy 3rd of march im getting it for 5 weeks so i have few weeks 2 recover from the operations i had hopefully ill have more energy by then cos ill be ready 4 anything that cums 2 me.

Many thanx 2 u all

Love Jackie

Erik45
Regular Member


Date Joined Oct 2007
Total Posts : 149
   Posted 2/20/2008 6:23 AM (GMT -7)   
I'm so sorry of what you are going through. You are in my prayers and you take care. I hope you beat this we are all in your corner.
Crohns for 11 years
1 surgery so far
2 times in hospital for blockages
MEDS:
Remicade
Imuran
B12 Injections


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 2/20/2008 11:03 AM (GMT -7)   

Hey Jackie,

I wish you peace and I pray all goes well.  Please know my thoughts are with you.
Gentle Hugs

Kitt


 
Kitt, Moderator: Anxiety ~ Panic  ~ Crohn's
*~* http://www.healingwell.com/donate *~*
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~
 


smile1967
Regular Member


Date Joined Jan 2008
Total Posts : 174
   Posted 2/20/2008 1:05 PM (GMT -7)   

Jackie, I am sending you my best wishes and prayers.

take care, shelley


40 yr old wife and mom to two boys 8 & 10
symptoms since the age of 19
officially diagnosed with crohn's Nov.2006
meds: pentasa 500mg 2 x 3day
(just went off Entocort 3mg 2/day)
Surgery booked for Feb.11th- TI resection(stricture)


IrnBruLover
New Member


Date Joined Jan 2008
Total Posts : 10
   Posted 3/8/2008 3:20 AM (GMT -7)   
Hi Every1,
             Just giving an update, I started my radio/chemotheraphy last week i take chemo in tablet form its called CAPECITABINE 1150 mg  they also gave me DOMPERIDONE 10mg 2x4times a day i have been very tired and feeling sickut the anti sickness tablets r gd. I have a question 4 any1 whos had a ileostomy reason is i have had a few times when ive done the toilet and its bleeding and im not sure this is normal its happened 4 times since thursday night im going 2 call my cancer nurse on monday im sure it will be normal but m just a lil worried and also i had same sore tummy i got b4 i had stoma but didnt last very long which im glad off but it panicked me a bit
the skin round my bag undesrneath the sticky part was burning and nipping all night thursday i cudnt even lie on that side when i went 4 my radiotheraphy on fri i spoke wif the nurse and she called my stoma nurse but got her pager but she left all my details and phone number so she cud contact me im gonna call her monday also im changing my bag everyday which i know i shudnt but im so paranoid that i smell and i cant shake that feeling off i hate my bag but i know its there 4 a gd reason but i cant cum 2 terms wif it all my family n friends say i dont smell and my fiance is the best ever he changes it and cleans it 4 me. My daughter came in other day when i my fiance was changing it and she says mum that looks like a P**** i cudnt but help laugh at her i cudnt tell her off 4 saying it it was all sid innocently by her. I have a cancer volunteer driver who takes me 2 hospital 4 my treatment and another lady the driver is great wot a lovely ( old ) man he makes us laugh by his silly jokes he takes ure mind of going 2 hospital. The nurses at the hospital r brilliant and all lovely they make u feel at ease all the time which helps.
 
I will keep u all informed of my progress
 
Jackie xx

lilturbo
Regular Member


Date Joined Feb 2008
Total Posts : 298
   Posted 3/8/2008 12:57 PM (GMT -7)   
Jackie,

I am so sorry you have to go through this. I hope you feel better soon! Will keep you in my prayers!

-Emma
turboemma.blogspot.com/

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