i had the pleasure of interveiwing an amazing woman ! she inspires us in the ibd communty so much and i think its so amazing that no matter what she goes thru in life she always seems to be so positive, despite all the obstacles life had given her she still has such hope and wisdom!thankx so muchd onna for sharing your wisdom with us!! i thank you very much for sharing your story with me and the world donna you are an inspiration to us all!! donna mear inspired me to create a new series of blogs of witch this is the first titled "Perspectives: thru the eyes and minds of ibd paitents" in this series of blogs i will be interveiwing people from all differant perspectives of ibd in hopes that thru sharieng each differant story we can all help the public understand how crohns and uc actually affects the paitents both mentally, spiritually and physically! I also want to showcase how differantly these diseases vary from person to person! thank you so much donna for inspireing a new series of blogs in witch i to dedicate to you.............
Crohns or UC?
donna: Although I was diagnose with UC after a few months they thought it could be crohns due to my history with ‘ibs’. They changed the diagnosis to inderterminate, meaning they weren’t sure. when I had my colon removed they prformed tests which confirmed it was UC.
Had you heard of IBD before being diagnosed?
I had not heard of crohns or UC before being diagnosed, I had no idea what they were, I wasn’t given any information when I was diagnosed. Much later Ifound out that my husbands nanna has crohns. People are open about many ther medical conditions but IBD is kept quiet like a dirty secret! it kind of makes me think of how aids and HIV used to be viewed.
Have you ever been in remission?
donna: I was still in a bad way when I gave birth to my daughter, I was still in hospital due to the UC and didn’t know I was in labour till her head began to appear. After I gave birth I began to breastfeed. I had breastfed my son for 2 years and had every intention of feeding my daughter. within 2 weeks of her birth my disease went into remission. colonoscopy showed no ulceration or bleeding. My symptoms returned to previous ‘ibs’ type symptoms but these were liveable. The fact that I went into remission as soon as i started feeding my daughter made me think whether this was linked. Then I remembered I was hospitalised very soon after stopping feeding my son. This had me worried so I fed her for as long as possible - just over 2 years. As I suspected as soon as I stopped feeding my daughter I fell ill again, to the same level I was when I was diagnosed.
is there anything you woudl liek to say to people who think that ibd is not a serious disease?
donna: That both crohns and colitis are both serious illnesses and can kill! doctors don’t just remove organs from he body for the fun of it! Also neither is worse than the other! they have there differences but are equally devastating! The only difference is UC is confined to one area. UC attacks can be much more severe than most crohns attacks and are more likely to cause toxic megacolon, perferation and death, but on a positive once the colon is removed you are cured, though it is quite a drastic life changing cure! Crohns on the other hand is much more chronic, can attack any part of the digestive system, is harder to control, it devastates lives, and is incurable. crohns is a life sentance.(chrystal adds to this with :crohns also can effect all parts of the body as well like the eyes, brain, skin, bones and spine)
What would you like to say to unsupportive people?
donna: Try walking in our shoes! When I said my wedding vows I meant every word! for better and for worse, in sickness and in health! I am so lucky to have a loving supportive husband who has stuck by me and given me the strength to fight, I would have done the same if it was the other way round! I have also been lucky to have supportive family and friends, but I have also lost some family and friends due to the disease. i think it is a good way to find who the decent people are! I have heard of friends whose husbands and family have been unsupporting and have left or abandoned them when they needed them the most. Seeing this happen makes me angry! We are not lazy! We did not ask for this! You can’t see cancer but as soon as someone mentions the word it is a free pass! mention IBD, and the response is totally different.
How did being diagnosed impact personality and spirituality?
I have always been a christian, and my battle with UC, has not damaged my faith, it has made it stronger. I had to rely on god to give me the strength to fight, and also the ability to fight fear. I prayed for surgeries to go straight forward with no problems, and both times I have defied the normal and healed and got better much quicker than expected. I have always gone out of my way to help people, I try to live my life like jesus would. When I was diagnosed and when I was battling with the bag, many ‘strangers’ helped me and supported me, showing me friendship and compassion, because of that, I see it as my obligation to do the same to help others, and in turn hope they go one to help others. the best support is from people ho have been there, who are willing to walk the walk with you and pick you up when you fall.
Surgeries?
I have had 2 surgeries, the first was to remove my colon and to give me an end ileostomy. My second surgery was to remove my remaining rectal stump.
Emotions before surgery?
Before my first surgery my emotions were all over the place! I had no experience of what a stoma was. It is such a taboo subject. h thought of pooing into a bag that was going to be constantly attatched to my stomach was not what I wanted! Me and my husband had many arguements because he anted me to have the surgery! He wanted his wife back, not for selfish reasons but because he knew how miserable I was! I met people who had bags, and realised you could not tell, and I began to think i could have my life back. What made me finally decide to go ahead, was when my surgeon said he was willing to put money on me being an emergency case within a month if i didn’t take it then. This plus him teling me if I was an emergency he couldn’t guarantee he would be doing it and it would most likely be open surgery made me finally decide to take the plunge! my bag gave me my life back and has allowed me to do all the things I loved to do before being diagnosed with UC
My second surgery was 20 months later. my remaining piece of rectum was being attacked by the UC nd was in a bad way. As i already had a bag for life, removing that annoying pain in the backside was an easy decision!
How did IBD effect your self esteem?
I was always outgoing and confident. But with the many accidents that I ended up having due to UC and how humiliated I felt I found I was no longer as outgoing. I used to love hiking and camping and watersports. i would go swimming all the time. I never took my daughter swimming till after I got my bag, when she was 3 yrs old! UC destroyed me, my bag has gien me my confidence back and i’m now an even better version of the person I was before, probably as I’m now thankful for everything my bag allows me to do.
Why do you think you got IBD?
IBD is a type of auto-immune disease. we are born with the auto-immune disease, it just has tobe switched on or triggered, a bit like turning on a light. something might trigger it and it arise as a different auto-immune disease. it is looking for a weakness. I was bottle fed as a child, weaned onto food very early so my mum could go to work. my diet as a child and teenager was not very good, and with a history if ibs in the family my bowels were already a weak spot. I think the hormones in pregnancy, or something related to the pregnancy of my daughter triggered the auto-immune disease and it attacked the weakest part of my body, my bowel.
When I was diagnosed.........
donna: I had always had ‘IBS’ and had been hospitalised a few times for it but they never did any tests, just dealt with the problems. I was diagnosed with UC when I was 7 months pregnant with my daughter evangelina. i began getting heavy bleeding from my back end along with severe diarrhoea and a lot of pain. I went to my gp and he just aid it was the pregnancy effecting my IBS and that the bleeding and pain were from piles. he gave me laxatives even though I told him I had diarrhoea! I went back later that week and he gave me fibergel! This continued for a couple of weeks, I was going to the toilet upto 40 times a day and was getting a lot of urgency and was getting very tired with the blood loss. My husband took me to hospital where I was given 4 pints of blood and they diagnosed UC. I was told they may need to perform emergency surgery if they couldn’t bring it under control. I was in hospital for the majority of the remainder of my pregnancy. i was allowed home for christmas and new year but was straight back in after.
Crohns or UC?
donna: Although I was diagnose with UC after a few months they thought it could be crohns due to my history with ‘ibs’. They changed the diagnosis to inderterminate, meaning they weren’t sure. when I had my colon removed they prformed tests which confirmed it was UC.
Had you heard of IBD before being diagnosed?
I had not heard of crohns or UC before being diagnosed, I had no idea what they were, I wasn’t given any information when I was diagnosed. Much later Ifound out that my husbands nanna has crohns. People are open about many ther medical conditions but IBD is kept quiet like a dirty secret! it kind of makes me think of how aids and HIV used to be viewed.
Have you ever been in remission?
donna: I was still in a bad way when I gave birth to my daughter, I was still in hospital due to the UC and didn’t know I was in labour till her head began to appear. After I gave birth I began to breastfeed. I had breastfed my son for 2 years and had every intention of feeding my daughter. within 2 weeks of her birth my disease went into remission. colonoscopy showed no ulceration or bleeding. My symptoms returned to previous ‘ibs’ type symptoms but these were liveable. The fact that I went into remission as soon as i started feeding my daughter made me think whether this was linked. Then I remembered I was hospitalised very soon after stopping feeding my son. This had me worried so I fed her for as long as possible - just over 2 years. As I suspected as soon as I stopped feeding my daughter I fell ill again, to the same level I was when I was diagnosed.
is there anything you woudl liek to say to people who think that ibd is not a serious disease?
donna: That both crohns and colitis are both serious illnesses and can kill! doctors don’t just remove organs from he body for the fun of it! Also neither is worse than the other! they have there differences but are equally devastating! The only difference is UC is confined to one area. UC attacks can be much more severe than most crohns attacks and are more likely to cause toxic megacolon, perferation and death, but on a positive once the colon is removed you are cured, though it is quite a drastic life changing cure! Crohns on the other hand is much more chronic, can attack any part of the digestive system, is harder to control, it devastates lives, and is incurable. crohns is a life sentance.(chrystal adds to this with :crohns also can effect all parts of the body as well like the eyes, brain, skin, bones and spine)
What would you like to say to unsupportive people?
donna: Try walking in our shoes! When I said my wedding vows I meant every word! for better and for worse, in sickness and in health! I am so lucky to have a loving supportive husband who has stuck by me and given me the strength to fight, I would have done the same if it was the other way round! I have also been lucky to have supportive family and friends, but I have also lost some family and friends due to the disease. i think it is a good way to find who the decent people are! I have heard of friends whose husbands and family have been unsupporting and have left or abandoned them when they needed them the most. Seeing this happen makes me angry! We are not lazy! We did not ask for this! You can’t see cancer but as soon as someone mentions the word it is a free pass! mention IBD, and the response is totally different.
How did being diagnosed impact personality and spirituality?
I have always been a christian, and my battle with UC, has not damaged my faith, it has made it stronger. I had to rely on god to give me the strength to fight, and also the ability to fight fear. I prayed for surgeries to go straight forward with no problems, and both times I have defied the normal and healed and got better much quicker than expected. I have always gone out of my way to help people, I try to live my life like jesus would. When I was diagnosed and when I was battling with the bag, many ‘strangers’ helped me and supported me, showing me friendship and compassion, because of that, I see it as my obligation to do the same to help others, and in turn hope they go one to help others. the best support is from people ho have been there, who are willing to walk the walk with you and pick you up when you fall.
Surgeries?
I have had 2 surgeries, the first was to remove my colon and to give me an end ileostomy. My second surgery was to remove my remaining rectal stump.
Emotions before surgery?
Before my first surgery my emotions were all over the place! I had no experience of what a stoma was. It is such a taboo subject. h thought of pooing into a bag that was going to be constantly attatched to my stomach was not what I wanted! Me and my husband had many arguements because he anted me to have the surgery! He wanted his wife back, not for selfish reasons but because he knew how miserable I was! I met people who had bags, and realised you could not tell, and I began to think i could have my life back. What made me finally decide to go ahead, was when my surgeon said he was willing to put money on me being an emergency case within a month if i didn’t take it then. This plus him teling me if I was an emergency he couldn’t guarantee he would be doing it and it would most likely be open surgery made me finally decide to take the plunge! my bag gave me my life back and has allowed me to do all the things I loved to do before being diagnosed with UC
My second surgery was 20 months later. my remaining piece of rectum was being attacked by the UC nd was in a bad way. As i already had a bag for life, removing that annoying pain in the backside was an easy decision!
How did IBD effect your self esteem?
I was always outgoing and confident. But with the many accidents that I ended up having due to UC and how humiliated I felt I found I was no longer as outgoing. I used to love hiking and camping and watersports. i would go swimming all the time. I never took my daughter swimming till after I got my bag, when she was 3 yrs old! UC destroyed me, my bag has gien me my confidence back and i’m now an even better version of the person I was before, probably as I’m now thankful for everything my bag allows me to do.
Why do you think you got IBD?
IBD is a type of auto-immune disease. we are born with the auto-immune disease, it just has tobe switched on or triggered, a bit like turning on a light. something might trigger it and it arise as a different auto-immune disease. it is looking for a weakness. I was bottle fed as a child, weaned onto food very early so my mum could go to work. my diet as a child and teenager was not very good, and with a history if ibs in the family my bowels were already a weak spot. I think the hormones in pregnancy, or something related to the pregnancy of my daughter triggered the auto-immune disease and it attacked the weakest part of my body, my bowel.
Well written! Well Done! x x
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