GI Hemmorhage

[actup]

Perrier I'd like to throw out another possible diagnosis- Von Willebrand disease. Unfortunately I needed an emergency small bowel resection for an obstruction and a preop CT scan picked up unusual bleeding in the peritoneum. I got a diagnosis of Von Willebrands seven years ago so was given fresh frozen plasma during the surgery to prevent further excessive bleeding. Most of the time I just bruise easily and may need 6- 12 hrs to stop bleeding from a small cut especially when I feel sick and fatigued. When more stable I have few noticeable bleeding tendencies.

Unlike a factor VIII deficiency ( A or B) this causes mild bleeding tendencies in most of it's several forms. Given the fact that your daughter's doctors have been unable to pin down the cause of her bleeding problem they should be willing to refer her for a workup from a hematologist. Any other MD would be fairly clueless. People may go their whole lives without a diagnosis as their bleeding tendencies are attributed to a number of other causes.

Please let us know how she is doing and the best of luck!

 

[TigerLilea]

This is the truth. Two weeks ago when she was in hospital with the 6 th Hemmorhage,there were no window coverings in the room. And the city lights are on all night. So a tech came and pasted newspapers to cover up the windows.mthis is the truth. This is in Canada. Lord have mercy on the Americans because I hope they do not take the Canadian medical route.

That is ONE hospital. You cannot claim because one hospital is bad that all Canadian hospitals are bad because that just isn't true. I've had several family members who've been hospitalized for various reasons over the past seven years and they have all received good medical care. I'm sorry that your daughter still is suffering and can't find any answers as to what is wrong with her, but as you have already mentioned, the US hospitals and European hospitals have not been able to provide you with any answers either. I'd take our medical system any day over the American one which leaves many people bankrupted.

 

[perrier]

That is ONE hospital. You cannot claim because one hospital is bad that all Canadian hospitals are bad because that just isn't true. I've had several family members who've been hospitalized for various reasons over the past seven years and they have all received good medical care. I'm sorry that your daughter still is suffering and can't find any answers as to what is wrong with her, but as you have already mentioned, the US hospitals and European hospitals have not been able to provide you with any answers either. I'd take our medical system any day over the American one which leaves many people bankrupted.

I'm very happy for you. Perhaps BC is better equipped. There are lots of wealthy people there. I'm in Montreal. And it isn't just one hospital. We have a brand new hospital just built. It's very nice. But a friend had surgery there three weeks ago. And she had a problem in the night. In the new hospital. And they said to her, we know you have a son who is a doctor, would he come in and help out. Look, I only know what goes on in my province, and some experiences in Ontario. I speak the truth.

I was hit by a van a few years ago, and the ambulance took me to another down town hospital. I needed hip surgery. I stayed in the corridor from Friday until Monday, on morphine, until the surgeon came to do the job on me and a lot of other people on Monday morning.

My father had heart problems and was left in the corridor for three days.

I speak the truth of what has taken place.

The USA hospitals are truly a cut above what I have seen here. I regret not trying to get to live in the USA. But I had many family obligations. Canada is a beautiful country. But getting sick is not good here. But I am also quoting several doctors whom I have as friends who have in private admitted to me the system is broken, because the government is cutting badly. A physician told me recently that he and his colleagues spent the majority of their time doing administrative work and are unable to see patients, because the govt has cut help with these matters. Another specialist told me most of the cash goes on cancer because that's what the majority get and there aren't resources too much for other problems.

A video capsule was unavailable for my daughter in the last bleed, unavailable in a huge hospital.

If you feel things are good, I'm thrilled. We will have to accept to disagree.

My sister's husband got a cancer, and they live in the USA, they were treated promptly professionally and compassionately.
European and American hospitals have been an absolute pleasure compared to what we have experienced here.

 

[Kati]

I'm very happy for you. Perhaps BC is better equipped. There are lots of wealthy people there. I'm in Montreal. And it isn't just one hospital. We have a brand new hospital just built. It's very nice. But a friend had surgery there three weeks ago. And she had a problem in the night. In the new hospital. And they said to her, we know you have a son who is a doctor, would he come in and help out. Look, I only know what goes on in my province, and some experiences in Ontario. I speak the truth.

I was hit by a van a few years ago, and the ambulance took me to another down town hospital. I needed hip surgery. I stayed in the corridor from Friday until Monday, on morphine, until the surgeon came to do the job on me and a lot of other people on Monday morning.

My father had heart problems and was left in the corridor for three days.

I speak the truth of what has taken place.

The USA hospitals are truly a cut above what I have seen here. I regret not trying to get to live in the USA. But I had many family obligations. Canada is a beautiful country. But getting sick is not good here. But I am also quoting several doctors whom I have as friends who have in private admitted to me the system is broken, because the government is cutting badly. A physician told me recently that he and his colleagues spent the majority of their time doing administrative work and are unable to see patients, because the govt has cut help with these matters. Another specialist told me most of the cash goes on cancer because that's what the majority get and there aren't resources too much for other problems.

A video capsule was unavailable for my daughter in the last bleed, unavailable in a huge hospital.

If you feel things are good, I'm thrilled. We will have to accept to disagree.

My sister's husband got a cancer, and they live in the USA, they were treated promptly professionally and compassionately.
European and American hospitals have been an absolute pleasure compared to what we have experienced here.

Hi @perrier before getting sick I was a RN? I totally understand what you are talking about. Management of these hospital wants to squeeze all they can from their staff, so often time as a RN you work in deplorable situations, short staffed, and unbelievable workload which prevents you to even go for a pee. Staff becomes overwork and jaded, this is not what they signed up for.

Here in BC. Cancer is funded, HIV is funded. Very much of the rest sucks. Wait lists are unbelievably long but that's only a detail.

 

[perrier]

@perrier
Just a thought - checking out autoantibodies might be worthwhile. I watched a very interesting video posted somewhere here just a couple of days ago. I think it was a British female professor who has been identifying autoantibodies in a number of people with intractable multi-system illnesses including psychiatric symptoms - and treating them with some significant success. Someone here may be able to point out where that video is - I can't find it.

She might be worth contacting; she seems compassionate and likely to take a moment to reply. Perhaps she could point to someone nearer you who could do similar testing.

One recognised cause of GI bleeding is autoimmunity (perhaps we discussed that on the other thread about GI bleeding).

I and my son are in that in-between zone where we are sick enough to have no energy to chase long shots and are not so seriously sick that we feel a pressing urgency to find an answer regardless. So we wait. But it sounds as though you and your daughter need something quickly.

Wishing you better times.

HI Hutan
Anyone come up with the name of this physician?

 

[perrier]

found it in my youtube history

Edit - not to suggest your daughter has the symptoms of those particular case studies @perrier . It's just that when I saw that video it made me think that autoantibodies seem to be able to cause all sorts of problems and it seems a path worth investigating. Has your daughter had any prednisilone?

BTW Would love to have that Suzanne O'Sullivan sit down and watch the video.

got it just now

 

[perrier]

A quick search and I found this (albeit from a veterinary website, but likely applicable to humans too):

"Since they are unable to regulate their body sodium concentration, Addisonian animals become severely dehydrated and hypovolaemic, reducing the perfusion of peripheral tissues. During an Addisonian crisis, this can result in gastro-intestinal haemorrhage and allow translocation of bacteria across the gut barrier."

https://en.wikivet.net/Hypoadrenocorticism

thanks. I never imagined this could cause a GI bleed.

 

[Kati]

@perrier i am not sure if it's also your daughter's case, but the care in Canada is extra bad if you ever mention either ME or CFS or MECFS. It's as is we were 'less than' and that we didn't deserve care.

Sending best wishes. I hope you find a compassionate dr willing to use technology, skills and compassion on both of you.

 

[kangaSue]

I initially did ask the GI doctor and he said, it/s not of consequence

That was my experience too. It wasn't until I started searching radiology sites that I found Radiologists placed more significance on any findings of GI tract bowel wall thickening. That doesn't stop GI doctors arguing the point because much of the findings are reported from the critical care area or emergency care and just don't get that there are chronic cases who have insidious onset.
https://criticalultrasoundjournal.springeropen.com/articles/10.1186/2036-7902-5-S1-S7

 

[TigerLilea]

@perrier i am not sure if it's also your daughter's case, but the care in Canada is extra bad if you ever mention either ME or CFS or MECFS. It's as is we were 'less than' and that we didn't deserve care.

Sending best wishes. I hope you find a compassionate dr willing to use technology, skills and compassion on both of you.

I was told by a GP that she never mentioned the fact that I have CFS and that I shouldn't either as most doctors won't take you seriously otherwise. I imagine that this happens outside of Canada also.

 

[taniaaust1]

. I needed hip surgery. I stayed in the corridor from Friday until Monday, on morphine, until the surgeon came to do the job on me and a lot of other people on Monday morning.

My father had heart problems and was left in the corridor for three days.

that sounds like Sth Australian hospitals.

 

[taniaaust1]

Thanks folks. But with GI bleeding, and my daughter collapsing when the hemoglobin goes under 10, I have to mention CFS. I've mentioned fibromyalgia in conservative circles,but we have had very careful care in Florida when we explained this. But as I said recently, last week the young doctor taking in my daughter said she never heard if CFS, and that it wasn't taught in med school. I have to mention there is a serious condition, my daughter is frail, looks wasted, can't walk.

nods, when you are very ill with this you cant help but have to mention it. I have the same issue. One needs to mention it as extra care needs to be taken in regards to the ME/CFS when staying in hospitals etc eg I cant have artifical sweeteners, cant tollerate bright lights over me all night, need more sleep and dont do well if woken up early and I respond badly to many drugs due to it.

I also have memory issues with it so can confuse info Im being given in hospital etc so even basic info at times needs to be written down for me. (nurses at hospital have noticed my memory issues as I repeatably at times ask them things)

I do agree though if someone can get away with not mentioning it eg not going to hospital etc, it can be a good thing.

 

[TigerLilea]

Thanks folks. But with GI bleeding, and my daughter collapsing when the hemoglobin goes under 10, I have to mention CFS. I've mentioned fibromyalgia in conservative circles,but we have had very careful care in Florida when we explained this. But as I said recently, last week the young doctor taking in my daughter said she never heard if CFS, and that it wasn't taught in med school. I have to mention there is a serious condition, my daughter is frail, looks wasted, can't walk.

Just my opinion, but when you have a serious condition such as GI bleeding, it doesn't make sense to bring CFS into the equation. Let the doctors focus on the GI problem. Not everything is related to CFS and it just confuses the situation when you throw too many variables at a problem. CFS is a bullshit diagnosis.

 

[Kati]

Just my opinion, but when you have a serious condition such as GI bleeding, it doesn't make sense to bring CFS into the equation. Let the doctors focus on the GI problem. Not everything is related to CFS and it just confuses the situation when you throw too many variables at a problem. CFS is a bullshit diagnosis.

The think is, @TigerLilea, if the patient is not working, bed ridden, photophobic, sound sensitive, cachexic a doctor in his right mind will ask questions. Not telling the truth can lead to plenty of trouble afterwards and raises suspicions (especially if the child is underage (I am not sure if it's @perrier 's case, but it doesn't matter we do not need to know)). There is a paper trail that follows and the narrative gets repeated over and over afterwards and seen by many professionals, especially if you have to visit emergencies and specialists on a regular basis.

i understand the stgma and the bias part, believe me, but being dishonest especially in a very severe case, that leads nowhere.

 

[TigerLilea]

i understand the stgma and the bias part, believe me, but being dishonest especially in a very severe case, that leads nowhere.

I don't think it is being dishonest when it comes to CFS. It is such a useless term that really doesn't mean anything because each of us has a different version of the illness. If I break my arm or get breast cancer, it's irrelevant if I have CFS. And in the case of the GI bleed that perrier's daughter is having, perhaps whatever is causing the bleed, is also the cause of the fatigue in the first place. I think it is okay to let a doctor know what symptoms a person is having without mentioning the term CFS.

 

[Hutan]

I've told doctors about my ME/CFS diagnosis or seen them read my GP's referral letter and then had them do a virtual or actual eye-roll and subsequently treat me as a hypochondriac who just needs to get out more. There have been times when, after waiting months to see the specialist and making a big effort to get to the appointment, I have then been quickly ushered out the door with a suggestion to see a naturopath or do mindfulness training.

And sometimes, for instance when I just wanted an antibiotic for a persistent ear infection in a city where I didn't have a GP, I have not felt able to take the risk of being dismissed as neurotic and haven't mention it. So @TigerLilea, I understand what you are saying.

I guess, as you suggested, it depends whether you think you have ME/CFS and that we as a group have illnesses that are sufficiently similar to constitute a disease that is worth studying. I do. And so I think, when we can, we should mention ME/CFS to the doctors caring for us.

If we don't, we are contributing to the invisibility of the illness. An perhaps even contributing to beliefs that having this illness is shameful.

My hope is that every time a doctor encounters a rational patient describing the symptoms of ME/CFS, it contributes to an awareness that this is a life-altering illness that is relatively common and needs to be better understood.

 

[Jonathan Edwards]

HI Hutan
Anyone come up with the name of this physician?

This is Angela Vincent, who is a good friend and also a good friend of ME/CFS patients who advises IiME, as I do. She has become interested in the possible relevance of autoantibodies to ME. So far anti-neuronal antibodies, which are her speciality, have not been found in ME/CFS but we are both interested to see if there is other possible antibody involvement.

I doubt she would be able to comment usefully on autoantibodies in the context of GI bleeding. There are some rare connections but they would not have any particular relevance to ME and should be fairly easily picked up (such as acquired factor VIII problems). GI bleeding in the context of neurological disease tends to make one think more of stress responses and steroid levels although repeated episodes would be less likely. Angiography should show if there is an ischaemia problem, but again, repeated intermittent bleeding is not what one would expect from ischaemia I think.

 

[TrixieStix]

It is difficult to advise on individual cases, however, I can make certain general comments.

1. GI bleeding has nothing to do with ME as far as anybody knows. I would cross this off the list of thoughts.

2. Corticosteroids are a common cause of GI bleeding but 15mg of hydrocortisone is a rather small dose. The question arises in my mind why your daughter is taking this? Even a dose of this sort in a child on a regular basis would normally be given for a very specific and well established diagnosis - and not ME/CFS.

3. Angiography (perhaps with CT or an MRI method) in the bleeding phase is the best way to pin down bleeding. That has not been mentioned. Bleeding from small bowel in children is quite often due to a local haemangioma that may be easy to remove.

4. Is your daughter under the care of a good university based hospital? This is a specialised problem that needs expert analysis. It is not the sort of problem that should be dealt with by doctors who hand out supplements to be honest!

5. Autoantibodies have little or nothing to do with GI bleeding. I would cross that off the thought list too pretty much. There are some rare links like acquired factor VIII deficiency and ANCA+ vasculitis but these should have been flagged up early on and would cause other signs as well.

Basically I think this has nothing to do with ME but it might have something to do with taking steroids. (Anti-inflammatories are another cause.)

Jonathan,

Have you ever head of a connection between positive "IBD p-ANCA, and Perinuclear Pattern" blood tests in ME/CFS patients? 2 years ago I was having a lot of gastro discomfort and symptoms and these blood tests came back positive so I had to undergo a colonoscopy and endoscopy under general anesthesia to make sure I did not have Crohns or Ulcerative Colitis. They found no signs of it but I can't find anything online where is talks about false positives on the those tests. ???

 

[kangaSue]

@TrishaMafia Would you mind elaborating on what symptoms you had to have a positive ANCA result?
I have an interest in intestinal microvascular ischemia which is something thought to be possibly a precursor to developing IBD and I'm looking into any antibodies that might be implicated in it that I can be tested for when I don't have Crohn's or UC.

 

[TrixieStix]

@TrishaMafia Would you mind elaborating on what symptoms you had to have a positive ANCA result?
I have an interest in intestinal microvascular ischemia which is something thought to be possibly a precursor to developing IBD and I'm looking into any antibodies that might be implicated in it that I can be tested for when I don't have Crohn's or UC.

At the time i had reduced appetite, feeling full after eating just a small amount, then immediately after eating my stomach would get very distended, and lots of nausea and feeling ill with it. I was losing weight also. Usually I am a big foodie and love to eat so this sudden change was troubling.

I pulled out my tests and these 3 were the only abnormal results in the "Immunology" section of the blood tests:

IBD-spec p-ANCA IgG ELISA : 22.7 (wish i knew more about what the # means)

IFA Perinuclear Pattern : DETECTED (Abnormal)

Vascular Cell Adhesion Molecule 1 : 1.06 (High)

I had the colonoscopy & endoscopy because of these results and they found no evidence but no one explained to me why I had these abnormalities and if they could be indicative of something else. If I needed to be restested in the future??