Bowel obstructions or Perforations

[dodi.houghton]

Has anyone ever experienced any problems with obstruction or perforations? Or if anyone you know that has?

[annekat]

Hi, Dodi. I don't know if you are the same Dodi I messaged with on Facebook yesterday... Not many on here that I remember have had bowel or colon issues, but you can do a search and you might come up with something in the archives. I do know that one of our members, Alysia has colon issues, but she is pre-occupied, as we all are, having just lost our friend Phil Berggren yesterday. The reason you are seeing some Batman avatars is that Batman was Phil's alter ego, and we are celebrating his memory that way.

Either here or in New Member Introductions, we would be glad to hear as much or as little as you want to say about yourself and what brings you here, and to give feedback on any aspects of WG and its treatment and any concerns you may have. Of course, you can post or start new threads on any of the topics at any time. This is a very open and caring group, and many of us have been through a lot with this disease, either as patients or caregivers. I hope someone will respond soon and that we will continue to hear from you.

[dodi.houghton]

thanks so much for letting me know about the forum..I have been sitting here all day not knowing where to start about her and the journey she had..I try to start a post but then i have to stop because its all too much

[annekat]

thanks so much for letting me know about the forum..I have been sitting here all day not knowing where to start about her and the journey she had..I try to start a post but then i have to stop because its all too much I am glad you are here! I understand that it is overwhelming to tell it all, so don't feel you have to do it all at once. People will understand. I do know that writing our stories can be therapeutic, but you have to be ready to do it. And don't worry if it ends up being long! I hope this forum ends up being as valuable to you as it has been to me over the last 3.5 years.

[dodi.houghton]

there are just so many things to tell and so many things I want to ask but I am not sure how to start. Would it be ok to msg you privately

[Rose]

WG attacked my GI system but never ( so far) caused obstruction or perforation....just made me feel so ill with 'gut ache' and fatigue. I went undiagnosed for 17 years and it was only when it dissipated and attacked my lungs, kidneys etc that I got a diagnosis and the 'side effect' of the treatment was that my GI issues improved dramatically. A colonoscopy post diagnosis confirmed WG in my bowel. I had a few colonoscopies before diagnosis but was told it was 'missed' as they were not looking for WG. Maybe if I had bled or something it would have been picked up sooner but the inflammation in the blood vessels in my gut was just enough to make me feel so terrible. It all makes sense now....my GI blood vessels were inflamed giving me a similar gut ache that you would get with gastro bug but because the cause of the inflammation was not infection but autoimmune I never got the relief that comes with the diarrhoea.
these days I rarely experience that terrible pain and the fatigue that comes with it though sometimes it does let me know it is still around. I guess just the same as when ones joints and muscles start to ache when you are having a bit of a flare.
Today I suffer from a severe case of diverticulosis and have had quite a few bouts of diverticulitis. I also have IBS and reflux disease. I know that WG has been the underlying cause of these diseases.

Rose

[Rose]

thanks so much for letting me know about the forum..I have been sitting here all day not knowing where to start about her and the journey she had..I try to start a post but then i have to stop because its all too much

Would also like to say that i know exactly where you are coming from with that statement. My 17 years undiagnosed were years of absolute hell especially the first 3 where I was almost totally bed ridden, curled up in the foetal position to ease the pain and could only walk a few meters to the loo as I was so fatigued. I was treated like a hypochondriac but I guess i can understand that when every test returned negative. At that point I had a one year old and a four year old. I lost a lot of weight initially but then antidepressants which i was put up saw me gain about 50 lbs. After the first 3 years I improved somewhat, could do light housework and pick up my kids from the local school. During that time I had quite a few bad relapses where I got again so ill, was admitted again into hospital for test only for them to find yet again nothing wrong. One day 17 years after my first GI symptom, my nose started to run. This is when I started to experience the classic symptoms of WG. So a WG diagnosis 6 months later(when it attacked my kidneys, lungs etc) was for me a relief......I wasn't mad after all. The doctors said that this was what I had been suffering from all those years and a colonoscopy a year or so into the diagnosis confirmed WG in the bowel. By then I knew that it was WG that had attacked my bowel because my symptoms had improved dramatically since commencing treatment

There were other things going on during those times like sinus issues, intermittent microscopic blood in urine but these symptoms came and went. I did not relate them to my bowel problems and neither did the doctors. The bowel problems at that point were so overwhelming and at times I was l suffering for months on end. Sometimes I am surprised I am still sane. Because of my experience I think I have an idea of how bad a perforation/obstruction must be and the journey that it took to get there

Rose

[annekat]

there are just so many things to tell and so many things I want to ask but I am not sure how to start. Would it be ok to msg you privately Yes, it would be absolutely fine if you PM me. And I'm glad to see that Rose has responded with her experience of WG in the GI tract, a subject I really know nothing about. BTW, your picture is beautiful!

[mrtmeo]

Hi Dodi,
My mom has MPA and they found some surface blood vessels exposed in the cecum and she has a peptic ulcer and barrett's esophagus which they think is from nsaids, but she didn't use nsaids that much.
I think all her digestive issues are due to the vasculitis is not uncommon.
Vasculitis attacks the small and sometimes medium blood vessels and it can happen anywhere in the body.
Bowel perforation is very dangerous because of sepsis.
It is something that requires immediate medical attention.

[dodi.houghton]

Thanks for your response! My daughter essentially passed away from it. She had complained for 3 days in hospital that she felt like she was being ripped apart inside. The doctors and nurses didn't take her seriously and told her it was because she was coming off IV pain meds

[Rose]

Thanks for your response! My daughter essentially passed away from it. She had complained for 3 days in hospital that she felt like she was being ripped apart inside. The doctors and nurses didn't take her seriously and told her it was because she was coming off IV pain meds
So sorry to hear that. Did WG cause an obstruction and perforation. She must have been in unbearable pain. Did THEY know what was causing her pain? Had the obstruction been diagnosed? I do know that an intestinal obstruction is a surgical emergency because of the pain and also the chance of perforation and sepsis. Think it is quite easy to diagnose. How long had she symptoms?

Rose.

[mrtmeo]

Thanks for your response! My daughter essentially passed away from it. She had complained for 3 days in hospital that she felt like she was being ripped apart inside. The doctors and nurses didn't take her seriously and told her it was because she was coming off IV pain meds

omg!
I am so sorry.
Did she have any mega colon going on?
This when the colon starts to swell.
Did she have a swollen abdomen?

[dodi.houghton]

I will tell you abit of her journey first so you have a better understanding of what happened

[mrtmeo]

I will tell you abit of her journey first so you have a better understanding of what happened

Yes, please share unless it is too painful.

[dodi.houghton]

My daughter was a first year student in college and was away from home. She would complain of her stomach being sore which we thought it was stress from school. She was tired but also thought school. Before she left for Xmas holidays to her dads she had started coughing up some blood but had a appt with her doctor in the following days. The doctor had diagnosed her with an ulcer, anemia and put her on puffers. The next day she complained she couldn't breath and was taken to the hospital. She was then diagnosed with stage 4 Wegners GPA. She was transferred to a hospital that could give her plasma treatments. She was in a induced coma and awoke from it which amazed doctors. She was in ICU for a couple of weeks where she continued to improve quickly which also shocked doctors. She was taking rituxan and heavy doses of steroids. While in icu she contracted C-Diff which was being treated. She was then well enough to be moved to the nephrology ward. She was in the nephrology ward for a couple of weeks as well and was told she was well enough to go home. The tuesday before her release date she started feeling stomach cramps and was having the runs. She had expressed her concern to her nurse thinking it could be the C-diff back. She was told her infection was gone. As the next day came she was in excruciating pain and said it felt like she was being ripped apart and felt as tho she was on fire. One of her 10 doctors came and said it was because she was coming off iv pain meds and that she had underlying issues....keep in mind my daughter never complained about pain unless it was bad. Physio could not get her up without her screaming at the top of her lungs and crying which she never did either. Nothing was done that night, no blood, nothing. The nurse she had that night did not come in once to do vitals on her. The following morning she was worse but she didn't let it ruin our visit. 3 doctors came in to see her and all they did was feel her stomach. I told the 3rd doctor he needed to do something for the pain and to do something to find out what was going on. He had scheduled a ultrasound that day. That night her breathing became very shallow and was now throwing up and having problems with the other end as well. Her aunt was with her and she told the nurses about it and they did absolutely nothing. That next morning she was code blue and was rushed to the OR to have her colon removed. She had a 0 wbc at this point. She was started on dialysis immediately to remove toxins. She slowly started to get some cells back and then her heart stopped 2 after having her dialysis line flushed.

[dodi.houghton]

It's extremely painful and I'm sorry if my story jumps 😞

[dodi.houghton]

The doctors had explained the rituxan can make the lining of the bowels weak. So if this is the case and they knew this why didn't they check her

[mrtmeo]

omg, what a horrible experience to watch a loved one go thru.
They probably thought she didn't have an infection because her WBC was low which is absurd.
She had Rituxan which can cause Leukopenia and this should have made them aware that sepsis could strike.
When our WBC counts start lowering, its time to prevent infection and this is where I up my mom's vitamin D.
Sepsis is one of the most deadly consequences to immune suppression.
Prednisone is known to cause thining of the digestive lining and any vasculitis attack could perforate something.
Also, prednisone lowers our vitamin D and is used to lower toxic D levels.

I'm so sorry you had to go thru this.
Please feel free to ask any questions or if you just want talk.
Everyone here is great.

[dodi.houghton]

Thank you 😞. They would have known if they would have done bloodwork. Her wbc was low because of all the meds and they always would say she could easily catch and infection or virus very quickly. Also how things can be masked by the meds. With that being said it should have given them more reason to check her regularly especially when she started having pain. But nothing was done for 3 days .. No bloodwork no temp, just a feel of the tummy

[dodi.houghton]

Instead we got attitude from 2 nurses who were too busy playing on their phone and one who's break was more important and asking when my daughter would be done throwing up in the bathroom because she had to take her break

[Rose]

The doctors had explained the rituxan can make the lining of the bowels weak. So if this is the case and they knew this why didn't they check her

Such a tragic story. She had bowel problems even before diagnosis. Were GI investigations ever done? Was WG ever confirmed in her GI system?

Rose

[dodi.houghton]

She never had problems before. She had contracted C Difficile which is a very highly infectious bacteria in the bowel. They said it was probably something she had ate. One doctor after her surgery thought it was colitis that had a pocket of C Diff still lingering but then at a meeting we had with our concerns they said she didn't have it.

[dodi.houghton]

thank you! Thats my beautiful girl :love:

[Rose]

You mentioned that she had a sore stomach whilst at college and that she had been diagnosed with an ulcer just before she started coughing up blood. Was the ulcer diagnosed by gastroscopy or just by her symptoms. Was just thinking that if she did have GI involvement she could have had wounds/ulcers in her bowel and before they had time to heal they could have become infected when she was immune compromised because of the immune-suppressants. Was peritonitis the cause of death?

So, so sad and I can feel your anger. Certainly major negligence there.

Rose

[mrtmeo]

thank you! Thats my beautiful girl :love:

I thought that was your daughter and it really broke my heart to see such pretty young girl suffer like that.
I don't know why Dr's don't use Iodine to kill these bad microbes because there is almost nothing that is resistant to it.
100gms of IV vitamin C would be better than what they use for sepsis.

[dodi.houghton]

it wasnt actually an ulcer as the doctor had thought. it was the wegners and thats where the blood had come from. She was diagnosed by symptoms. No one would have thought it was something so serious. This all happened so quickly. She never complained up until the last week before going for xmas holidays and the blood started that week as well. When she was diagnosed the doctors couldnt believe how she was still active. Her levels were so low she should have been flat on her back in bed. They said it was the Vasculitis but i say it was the sepsis. She was going home on the monday and this happened on the friday.. I am so beyond angry now and I thank you for agreeing with negligence.

[dodi.houghton]

and that just it...sepsis is treatable if caught in time. My heart is shattered in a million pieces.

[Rose]

and that just it...sepsis is treatable if caught in time. My heart is shattered in a million pieces.

So sorry for your pain. As the mother of a daughter who is not much older than your lovely girl, I know that your heart will always be shattered but I hope that with time the pain will not be so raw and will ease a little,

Rose

[dodi.houghton]

I hope so too...I hope i have some of my questions answered at the next meeting

[mrtmeo]

Wg's can really sneak up on you and destroy organs very, very quickly.
This is why it so imperative that awareness gets out, so Dr's can recognize this disease and treat it before permanent damage happens.
This is such a devastating disease.

[dodi.houghton]

Yes it is.. We have brought some awareness of it to my hometown. We did a walk in her name and raised almost 9000.00 . It was on the news and she has been in several papers

[dodi.houghton]

https://m.facebook.com/story.php?story_fbid=10150476268821743&id=536721742

[dodi.houghton]

http://barrie.ctvnews.ca/walk-held-to-remember-orillia-teen-1.1901228?ot=Html5MobileRedirectPageLayout.ot&type=iphone&redirect=false#

[mrtmeo]

Yes it is.. We have brought some awareness of it to my hometown. We did a walk in her name and raised almost 9000.00 . It was on the news and she has been in several papers

That is awesome!

[dodi.houghton]

Thank you ..did the links work ?

[dodi.houghton]

What is Leukopenia?

[drz]

You mentioned that she had a sore stomach whilst at college and that she had been diagnosed with an ulcer just before she started coughing up blood. Was the ulcer diagnosed by gastroscopy or just by her symptoms. Was just thinking that if she did have GI involvement she could have had wounds/ulcers in her bowel and before they had time to heal they could have become infected when she was immune compromised because of the immune-suppressants. Was peritonitis the cause of death?

So, so sad and I can feel your anger. Certainly major negligence there.

Rose

It is very sad when one dies after getting the best care possible because the disease or complications from it or treatment are just too much for the body to handle, BUT it is another matter altogether when the death should have been prevented for the patient if the patient had just received adequate medical care which should have been readily available in their setting.

[dodi.houghton]

I totally agree. I was actually just reading up some more on sepsis and the symptoms. She had the symptoms of sepsis and the first 3 hours is the most important. Not one doctor or nurse took her vitals nor blood work or they would have seen something brewing. The thing is she was such a strong girl and had the doctors in awe a few times. She was even supposed to be a case study

[mrtmeo]

Thank you ..did the links work ?

yes, they worked for me.

[dodi.houghton]

The doctor said the rituxan and steroids will mask other things, but isn't that more reason to investigate when a patient is telling them something is wrong?

[mrtmeo]

What is Leukopenia?

Leukopenia is when your white blood cells are too low and those are your immune system.

Leukopenia (also known as leukocytopenia, or leucopenia, from Greek (http://en.wikipedia.org/wiki/Greek_language) λευκό - white and πενία -deficiency) is a decrease in the number of white blood cells (http://en.wikipedia.org/wiki/White_blood_cell) (leukocytes) found in the blood (http://en.wikipedia.org/wiki/Blood), which places individuals at increased risk of infection (http://en.wikipedia.org/wiki/Infection).
Neutropenia (http://en.wikipedia.org/wiki/Neutropenia), a subtype of leukopenia, refers to a decrease in the number of circulating neutrophil granulocytes (http://en.wikipedia.org/wiki/Neutrophil_granulocyte), the most abundant white blood cells. The terms leukopenia and neutropenia may occasionally be used interchangeably, as the neutrophil count is the most important indicator of infection risk. This should not be confused with agranulocytosis (http://en.wikipedia.org/wiki/Agranulocytosis).
Leukopenia - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Leukopenia)

[dodi.houghton]

Ok thank you very much

[drz]

My doctors told me leukopenia meant I was at high risk for any infection and that i had to take special precautions like wearing a masking when I had to be out in public and to try avoid people at much as possible while in that state, especially anyone that was ill.

[dodi.houghton]

Yes they had mentioned that as well to us and to her.

[dodi.houghton]

I just don't understand how they knew these things but yet nothing was done. She had some of the best doctors in Ontario

[annekat]

thank you! Thats my beautiful girl :love: Oh, that is your lovely daughter! I've been gone all day and haven't caught up on all these posts yet, but am so glad that you are telling her story and letting it all out, even though it must be very painful. You have come to the right place to do this, and found people who you can talk to about it, which makes me very glad I gave you the link to this forum.

[dodi.houghton]

And I thank you as well it's been very helpful

[mrtmeo]

I just don't understand how they knew these things but yet nothing was done. She had some of the best doctors in Ontario

It has been the most horrible and frustrating thing that I have to know more than the drs to get proper care.
I can't tell you how many times my mom would have died had I not intervened.
I have spent years now, learning all I can about blood work and how to interpret what maybe causing what.
We trust those who have all the data and resources and education to treat us properly, but so many slip thru the cracks.
This is why I push to give others what I have learned, so they can understand what's going on with their care and not blindly trust.

However, even knowing all that you can, might not be enuf when dealing with rare diseases like this one.
All we can do is the best we can with the knowledge we have at the time.

[dodi.houghton]

The hospital put in new protocol now because of my daughter. I don't understand why that would be necessary if they did their job like they said

[mrtmeo]

Your daughter's story kind of reminds me of a young girl named Lauren Currie who died due to wegener's.

About Lauren (http://www.thelaurencurrietwilightfoundation.org/about-lauren.html)

[dodi.houghton]

Oh really ? That's so sad

[dodi.houghton]

😞 the simularitys are uncanny

[drz]

It has been the most horrible and frustrating thing that I have to know more than the drs to get proper care.
I can't tell you how many times my mom would have died had I not intervened.
I have spent years now, learning all I can about blood work and how to interpret what maybe causing what.
We trust those who have all the data and resources and education to treat us properly, but so many slip thru the cracks.
This is why I push to give others what I have learned, so they can understand what's going on with their care and not blindly trust.

However, even knowing all that you can, might not be enuf when dealing with rare diseases like this one.
All we can do is the best we can with the knowledge we have at the time.

It is sad that sometimes too often a patient's survival depends upon upon the knowledge and skill of their family member who is acting as their advocate and directing their health care. I doubt i would have survived my initial treatment without my daughters presence and continual supervision or overseeing of my care for the weeks I was in ICU. She had contacts who kept searching and gathering info to help her discuss my treatment options with my treating staff who also consulted with several well known Weg experts to decide upon best care for me.

Mrtmeo, your mom is lucky to have you as her advocate but like you say it is scary and upsetting that many without such an advocate won't survive their initial treatment or incur far more damage to their body that could have been avoided. Having a good advocate shouldn't be necessary to get good care but unfortunately it seems it often is necessary.

[mrtmeo]

It is sad that sometimes too often a patient's survival depends upon upon the knowledge and skill of their family member who is acting as their advocate and directing their health care. I doubt i would have survived my initial treatment without my daughters presence and continual supervision or overseeing of my care for the weeks I was in ICU. She had contacts who kept searching and gathering info to help her discuss my treatment options with my treating staff who also consulted with several well known Weg experts to decide upon best care for me.

Mrtmeo, your mom is lucky to have you as her advocate but like you say it is scary and upsetting that many without such an advocate won't survive their initial treatment or incur far more damage to their body that could have been avoided. Having a good advocate shouldn't be necessary to get good care but unfortunately it seems it often is necessary.

Drz,
That is awesome that you had such a good advocate.
It always makes me happy to see others that have someone helping them get the best care if possible especially, when drugs like prednisone can leave one not mentally capable to make a decision or are just way too sick.
Your daughter sounds pretty resourceful and intelligent.
You are lucky.

[drz]

Drz,
That is awesome that you had such a good advocate.
It always makes me happy to see others that have someone helping them get the best care if possible especially, when drugs like prednisone can leave one not mentally capable to make a decision or are just way too sick.
Your daughter sounds pretty resourceful and intelligent.
You are lucky.

Two years later I saw one of the many doctors for a routine follow up visit when his partner was ill. He said I remember you. You had a very severe case and miraculous recovery, probably meaning I survived when it was very doubtful. Then he said you had an advocate that was very involved in your care and very effective, didn't you. He meant my daughter so she must have also left an impression. He also agreed I was very lucky to have had such an advocate.

[dodi.houghton]

I wish I had that chance but everything happened so fast

[mrtmeo]

I wish I had that chance but everything happened so fast

You were her advocate and I'm sure there is nothing she wanted more than you by her side.
Realize that even if you had all the knowledge, she might not have made it because this disease happens fast and can destroy organs very fast.
By the time we are peeing ice tea colored urine, we are in end stage renal failure.

People are aware of cancer, so when they hear the C word, they sympathize, but with vasculitis, it is so rarely known and so destructive.

[dodi.houghton]

Yes very true

[Tom]

Has anyone ever experienced any problems with obstruction or perforations? Or if anyone you know that has?

Hi there Dodi. im one of those occasional posters but I stay up on them when I can.

A couple years ago I had a bowel obstruction and I was in the hospital 14 days. I went in after suffering all night and then all day and went in in the evening. I was get vomiting and the pain was excruciating. I was throwing up things that I was sure I didn't eat and told the nurse that each time I vomited I felt better for a short. To be graphic, I told the nurse that what was coming up looked like feces! She assured me it was because I was backed up and it was trapped on the wrong side of the obstruction. Its a very serious condition and needs to be treated. They scheduled me for surgery a wee after I was admitted but began to pass a little gas just a couple hours before I was scheduled. I have had colon cancer, hence a resection and with my COPD and other health issues, they really didn't want to do surgery for fear of introducing bacteria to my medically depressed immune system. Im told that once you have an obstruction, there is a greater chance for a second at some point. I had scar tissue from my cancer and they felt that was partially causing an obstruction and feared cutting more colon would only bring on more attacks. That is my experience with a bowel obstruction.

[dodi.houghton]

I'm so sorry that had to have been unbearable

[dodi.houghton]

I couldn't even imagine the pain. It breaks my heart to know that my daughter and yourself had to go thrown that

[dodi.houghton]

A week after???? Why so long

[mrtmeo]

Hi there Dodi. im one of those occasional posters but I stay up on them when I can.

A couple years ago I had a bowel obstruction and I was in the hospital 14 days. I went in after suffering all night and then all day and went in in the evening. I was get vomiting and the pain was excruciating. I was throwing up things that I was sure I didn't eat and told the nurse that each time I vomited I felt better for a short. To be graphic, I told the nurse that what was coming up looked like feces! She assured me it was because I was backed up and it was trapped on the wrong side of the obstruction. Its a very serious condition and needs to be treated. They scheduled me for surgery a wee after I was admitted but began to pass a little gas just a couple hours before I was scheduled. I have had colon cancer, hence a resection and with my COPD and other health issues, they really didn't want to do surgery for fear of introducing bacteria to my medically depressed immune system. Im told that once you have an obstruction, there is a greater chance for a second at some point. I had scar tissue from my cancer and they felt that was partially causing an obstruction and feared cutting more colon would only bring on more attacks. That is my experience with a bowel obstruction.

Ouch Tom!
What a horrible thing to go thru.
My mom has COPD too.

[Jaha]

Dodi, I am so very sorry that you lost your beautiful young daughter to this horrible disease. Thank you for sharing her story and bringing awareness to others about wegeners. These other conditions or complications are so many times overlooked and not linked to wgs. It is so hard to explain to new docs about what can be related to the disease and they seem to not know the key tests to order. Awareness is the best thing that we can do. Wishing you all the best for some peace.

[mishb]

I'm so sorry Dodi, to hear of your daughters passing.
After Phil passed away, I have only slowly been getting back to other posts/threads. I have quite a few pages to catch up on.

Alysia, this is the post and you and I have missed while we haven't been around much.

[dodi.houghton]

Thank you so much. It's been hell trying to figure this all out. I had a meeting on Monday with the hospital. It's actually the second meeting, and still no one has taken any responsibility in their actions of not monitoring her signs that she was becoming septic

[dodi.houghton]

Unfortunately she had some of the top doctors who specialized in vasculitis. I can't comprehend how the nurses would not think throwing up blood isn't a good enough sign to call a doctor. And that was just one sign of something going very wrong

[gilders]

So sorry to hear about your daughter. I've been going through a relapse for the last 24 months and have been on and off this forum and missed the news of your daughter.
I was 17 when diagnosed and suffered from septicemia whilst in hospital. Luckily I had a good Dr and the NHS was in a much healthier state back then (19 years ago).

[dodi.houghton]

I don't understand because she had amazing doctors sorme of the best. She was to be released in a few days and I feel that they were more focused on that than the symptoms she was having. I totally understand this disease is so difficult but when she is saying and i quote " it feels like I am being F@!.% ripped apart inside and feel like I am on fire there's a problem

[mishb]

I have just noticed that you are in Canada, as Phil also was :sad:

Phil was always adamant that Canada has the best WG specialists, but now I'm starting to wonder.

I know that no-one should ever have to go through the pain that you daughter did, but especially not a young lady of her age.

I hope you get some answers soon.

[dodi.houghton]

Thank you i do as well. I am having another investigation done thru the Board of nurses. There were just too many breach of standards broken and it's not ok. Canada has amazing health care and the doctors and nurses were exceptional up until 5 days before she was io be released

[Alysia]

Hi. I am deeply sorry for your painful loss. My heart is going out to you. Sorry that I didn’t write here earlier. Only yesterday or so I found out about you.
my beautiful hero, love of my life, Phil, passed away on Oct 2. My soul is bleeding from endless pain. You can read about his last fight and about my fight to be his advocate in here http://www.wegeners-granulomatosis.com/forum/weggie-s-stories/889-update-pberggren-257.html starting from post number 2564 and continue here http://www.wegeners-granulomatosis.com/forum/general-wg-chat/4238-update-pberggren-continued.html
we met here in the forum about a year and half ago.
He passed away in Foothills Medical Center in Calgary. Actually, they killed him. it shouldn’t have happened. They did so many fatal mistakes, which eventually killed him. the main are those:
1. the med that killed him eventually, as I suspect, the fentanyl (narcotic, opoids, pain killer) - they didn't prevent its farther damage after he almost died from an over doze of it, a day and half before. Which is malpractice by itself. plus the fact that they shouldn't have given it to him at all. It’s a med that is not allowed to people with respiratory problems. It suppress the breathing. He became more and more short of breath because of it and we didn’t know why he became so. No doc stopped to consider this option.
2. the infections that he got there, like Ecoli that almost killed him and brought him to the ICU and the fact that even tough I asked from day number one to keep him in a clean room they didn't listen to me. I had to tell nurses and stuff at least 4 times a day to put on gloves when they treat him.
The infection of your daughter is also a neglect that shouldn’t have happened. They should be totally careful with immune-suppressed patients, but they are not.

3. the fact that they didn't consider his wg as a factor that might be active only until it was late, only one vasci docs saw him only once at the ICU, when it was too late. he didn't come back to follow his case. no one before. no one after. the fact that I begged for vasci doc every day and no one came.
I also think in retrospect that the holes in his lungs that caused his pneumothorax and brought him to the hospital was wg-made. But no doc considered this an option.
What can I say about the health system in Canada after being with him in hospital 8 weeks and 2 days ? : ignorance, arrogance, neglect and malpractice. The life of a man worth nothing. It a shame. I am mad at them. And no investigation. Is there a way I can ask for an investigation of his case ?
Btw. I have colon involvement of wg. Its caused me horrible diarrhea, loss of weight and pains. No obstruction. No bleeding. But this info is too late for your daughter.
I am sending to you warm hugs from the bottom of my heart and crying with you, for your daughter, for my sweet Phil, and for us, who remain here, with never ending pain….

[Alysia]

https://m.facebook.com/story.php?story_fbid=10150476268821743&id=536721742

link isnt working for me.

[dodi.houghton]

I'm so sorry to hear about Phil. I knew of him from some of the groups i joined. He was very loved and had many ppl following. His journey. It's one thing to grieve the loves of our lives but when it's the fault of the hospital, doctors and nurses it's double the pain. My daughter was on fentanyl as well and I never knew it was not to be administered ughhhh can you im me?

[Alysia]

sending you pm in few min

[dodi.houghton]

Well the Medical Records are here ...if there is anyone that can help with medical terms when I'm stuck. It would mean the world

[ingemlb]

Dodi I am so sorry for your tragic loss. What a shocking thing to have happened. I have had issues with bowel obstructions for many years but have been very lucky in that my specialist knows exactly what to do. When they strike I quickly go into shock. The pain I can only describe as feeling like the worst kind of childbirth so I can relate to what your daughter said, your organs being torn apart inside. So far I have not had to have surgery. I was able to get over all obstructions by spending a week or 2 on a drip in hospital with nil orally and of course injections against the pain and some anti spasm stuff.

It's been a shock for me to read once again how quickly this disease can strike and get VERY nasty. I am glad people shared about the effect of Prednisone and RTx on the bowels or the symptoms. I have not had any major issues with my bowels since I started treatment early Feb this year but this has given me another incentive to get off the pred as fast as possible. In my case Wegener's has mainly affected the digestive system, mouth, eyes and sinus's. My lungs and kidneys are ok. Nobody has ever checked my bowels for Wegener's. In the past it was thought the obstructions were caused by adhesion, IBS and then I was diagnosed with IBD but my current Gastroenterologist seems to think all my problems are due to Wegeners. As I have read here on the forum that it is not always the case that you can find the evidence in the organs I tend to agree with her. Since treatment started many of my problems have improved and so I must assume the treatment is doing something right. Hence to me its not such a big issues now to find granulomas to "prove" that it's all Wegener's.

It's devastating to think that negligence or ignorance led to your daughter's death. I have always battled with myself as to what to do in such cases. My father's life was dramatically shortened due to an accident at the hospital. He had been on blood thinners for years and then a home nurse (who had been rough a few times before) perforated his bladder when trying to insert a catheter, causing haemorrhaging. That lead to him being hospitalised. The hospital stopped the blood thinners (of course) and then tried to fix his rapid heart rate (a fib) which was the reason for the blood thinners. They gave him meds to slow down the heart. One weekend his heart rate was below sustainable level but the nurses despite doing frequent tests, continued to give him the drugs to slow it down until his heart stopped. It took 15 minutes to resuscitate him after which he spent a week in an induced coma, on ice, in an effort to minimise brain damage. He had not been diagnosed corrected at that stage (dad suffered from MSA) but was being treated for a multitude of diseases which in the end he didn't have as MSA covered all the symptoms. Anyway no cure no treatment for that one. So after his accident in hospital he went downhill rapidly and died within 7 months, only left the hospital for 2 weeks during that time. Now in my father's case, when we became aware that most likely he had MSA it seemed that the nurses did him a favour because many MSA patients end up in a coma for years where they are still aware of what is happening but can't communicate any longer. That would have been shocking for Dad. As it was, the last 7 months he had a tracheostomy, stomach feeding tub, pacemaker, catheter and many drips. He caught bugs in the hospital that seemed impossible to get rid of. He spent his day stretched out in bed unable to move himself not even his arms. It was awful so in a way I didn't think he had anything to look forward to. Anyway as a family we decided not to pursue the negligence. We felt if anyone is to blame it's the government for keeping our hospitals understaffed. The nurses were all run off their feet and nobody deliberately let this happen. Yes ... someone should have contacted the doctor with his blood pressure and heart rate results before giving more heart pills ...

But in your daughter's case I would feel totally justified in taking action against the negligence. Not that it will bring her life back but it may just safe someone else's. So sorry Dodi. I hope you get some peace and please don't beat yourself up over this. With the fast rate this all happened there is not a lot you could have done. It's such a rare disease and seems to strike everyone differently. My condolences to you and your family.

[dodi.houghton]

Thank you so much and to tell me about your story. I still cannot wrap my head around it and how they would not take her serious. She was immune compromised from all the meds and was told by the doctors them selves that precautions are necessary be sir the meds mask other symptoms. Not to mention the fact she was just finishing antibiotics for C-Diff. She was in so much pain and was ignored. She was told it was in her head and that she had underlying issues and was having rebound pain from coming off of IV meds because she was switched to oral meds. She was supposed to be going home in the never couple of days as well. One of the things that was said at the last meeting at the hospital was that the nurses weren't used to having someone so young in the nephrology ward. So i guess that meant she didn't deserve the same kind of treatment or care that the other patients receive . I requested some of her medical records of the last 2 weeks while she was there, but I just can't bring myself to open the box 😞

[ingemlb]

Dodi maybe her age gave false confidence that perhaps she was stronger and less fragile / ill than some of their other patients. I had C-diff some years ago and in my case it was thought to have been caused by long term antibiotics. But that awful pain and all her symptoms should have alerted the staff that things were seriously wrong. Sometimes I think that staff lose their overview. They focus on the symptoms that they are used to dealing with in whatever ward you end up with. I remember Dad because of his multiple supposed diseases had many teams of specialists all looking after their particular part of the puzzle and little attempt was made to coordinate all this. Doctors or other medical professionals could walk in and prescribe or make decisions without referring to someone who was in charge of the entire patient. Hence one person would order x and another one would cancel and order y instead. They kept copious notes in fact so many notes that I doubt anyone had the time to read them through. :( I can understand it will be difficult for you to read her records :(

[dodi.houghton]

I believe it was partially her age and how she shocked the doctors at how quick she responded to treatment considering she was stage 4 when she was diagnosed. And their focus was on her being discharged.