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GI Hemmorhage

perrier

Senior Member
Messages
1,254
Is GI bleeding related to This illness.

Any leads would be appreciated.

The doctor now wants to do exploratory laporotomy.
 
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Kati

Patient in training
Messages
5,497
my daughter has now had 6 bleeds, requiring multiple transfusions each time. The bleeding has lasted from 6 to 15 days. Hemoglobin dropping sometimes to 6.

These started 4 years ago.

Is this serious problem related to This illness.

Any leads would be appreciated.

The doctor now wants to do exploratory laporotomy.

She's so weak, I'm terrified she won't make it.
Hi @perrier it sounds horrendous. I am very sorry.

Hemorraging is not a typical symptom of ME and it might well be a much different problem that deserve further investigation.

Did she have endoscopy, on either ends of the GI tract?

Sending best wishes. There are guidelines for anesthesiology for ME patients. I particularily like Dr Lapp's one.
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
@perrier, I liked your post in order to convey my sympathy - but liking is of course not appropriate for your news. Your daughter and your family are having such a very hard time of it.

(@TigerLilea, I'm not sure that the bleeds aren't related to ME/CFS. There is a thread here on PR where a number of us have had GI bleeding. Although, of course, it should be checked out regardless.)
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
@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.
 

Justin30

Senior Member
Messages
1,065
I have had GI issues but not like this. I have heard of ME patients getting Ulcerative Colitis and Crohns but I dont know their stories only brief Bios.

I hope they find the answer to this @perrier. And I'll send a prayer your daughters way.

Justin
 

perrier

Senior Member
Messages
1,254
Thanks everyone. The other question I wonder about, is can hydrocortisone cause these bleeds.
 
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perrier

Senior Member
Messages
1,254
@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.
If someone know who this is, please post.
I find it hard to believe that the bleeds are not somehow connected to this horrific illness.
 

Kati

Patient in training
Messages
5,497
Thanks everyone. The other question I wonder about, is can hydrocortisone cause these bleeds. They are dramatic, though. My daughter was put on Cortef 15 mg
Hi @perrier, Steroids in general can cause stomach ulcers. Here is what a quick search yielded

http://bmjopen.bmj.com/content/4/5/e004587.full

It would be best you discuss concerns with the treating physician. Any consideration to stop steroids should be decided with the physician because these usually need to be carefully slowly tapered down. I have had to taper off Cortef myself and to be honest it was not a walk in the park but that is just me.
 

kangaSue

Senior Member
Messages
1,851
Location
Brisbane, Australia
@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.
Just bumping this. Can anyone tell me where I can find this video about autoantibodies, searching for "autoantibodies" doesn't help find it.
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
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.
 
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Hutan

Senior Member
Messages
1,099
Location
New Zealand
@perrier Have you seen Cort's latest blog on Health Rising about the IiME conference? It reinforces the likely importance of autantibodies in ME/CFS.
e.g.

Scheibenbogen is particularly interested in autoantibodies that might be attacking receptors on neurotransmitters in ME/CFS patients.

Thus far they’ve found increased levels of antibodies against two types of receptors in a subset of patients. The receptors were
  • the beta 2 adrenergic receptor – this receptor binds with epinephrine (adrenaline) and plays a key role in regulating the blood flows, muscle activity and breathing.
  • muscarinic acetylcholine receptors – these receptors regulate the activity of acetylcholine, the neurotransmitter associated with the parasympathetic nervous system.

The following comment on the blog was interesting.

Great article Cort. We have started checking the PANDAS autoantibody panel (Cunningham panel) and are finding a good correlation with symptoms (the test is expensive, however). Been hesitant to do Retuxamid because we have found almost all CFS/ME patients have abnormally low CD19/CD20 cells, so not sure if want to lower them even more?? This is great research. Been doing LDN, IVIG and peptide immune-modulators with some success. Looking into doing plasmaphoresis.

Maybe that Cunningham panel is a test you could get for your daughter somehow - perhaps by tracking down a PANDAS specialist? They might be open to looking for other autoantibodies too, if you showed them some of the research relating to this.

Have a look at http://www.moleculeralabs.com
They offer the Cunningham panel test to people in the US and Canada.

Sorry if I am blathering on and/or you have already explored all this.
 

kangaSue

Senior Member
Messages
1,851
Location
Brisbane, Australia
found it in my youtube history
Thanks for the link Hutan, not as informative as I hoped though.

I've been looking into antibodies known to cause chronic GI dysfunction but can't say that I have come across GI haemorrhage as a symptom. I was looking to have Autoimmune Autonomic Ganglionopathy or it's restricted form, Autoimmune Gastrointestinal Dysmotility excluded as a cause of my chronic GI dysfunction.

I fit symptom-wise but tested negative to ganglionic AChR antibodies, as is the case for 50% of cases but is the main qualifying criteria most doctors go by. A low titer of N-type Voltage-gated calcium channel antibody did show up but that's considered to be in the normal range, in those that don't have chronic GI dysfunction anyway. Can't convince the doctors that it might not be normal to have these antibodies in someone with chronic symptoms.
Have you seen Cort's latest blog on Health Rising about the IiME conference? It reinforces the likely importance of autantibodies in ME/CFS.
Jonathon Edwards posted somewhere in another discussion about autoantibodies that the adrenergic and muscarinic AChR antibodies found in that study were probably just a marker of an autoimmune condition rather than a causative factor.
 

Justin30

Senior Member
Messages
1,065
Isnt bowel ischemia associated with substantial problems in the GItrack caysed by hypovolemia and POTS?
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
I've been looking into antibodies known to cause chronic GI dysfunction but can't say that I have come across GI haemorrhage as a symptom.
Gastrointestinal Manifestations in Systemic Autoimmune Diseases
[edit, sorry, left this off] http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3150032/
In an autoimmune disease, the immune system attacks and harms the body's own tissues. The systemic autoimmune diseases include collagen vascular diseases, the systemic vasculitides, Wegener granulomatosis, and Churg-Strauss syndrome. These disorders can involve any part of the gastrointestinal tract, hepatobiliary system and pancreas. They can cause a variety of gastrointestinal manifestations that are influenced by the pathophysiologic characteristics of the underlying disease process. There is a wide variation of gastrointestinal manifestations from these autoimmune disorders including, but not limited to: oral ulcers, dysphagia, gastroesophageal reflux disease, abdominal pain, constipation, diarrhea, fecal incontinence, pseudo-obstruction, perforation and gastrointestinal bleeding. Clinical workup should be initiated by the patient's subjective complaints. In this review, we analyze the effects of autoimmune diseases on the gastrointestinal tract.

Thanks for the link Hutan, not as informative as I hoped though.
Yes, it isn't big on details. I liked a few things about it though. One thing was that, in the case studies, treatment for autoantibodies seemed to bring about quite quick and significant improvements in people who were in desperate situations and had a wide range of symptoms.

Jonathon Edwards posted somewhere in another discussion about autoantibodies that the adrenergic and muscarinic AChR antibodies found in that study were probably just a marker of an autoimmune condition rather than a causative factor.
Maybe they are just markers, but if they are markers for an autoimmune condition, then perhaps treatments like rituximab can help?
 
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perrier

Senior Member
Messages
1,254
Thanks for all this. One doctor suggested the Cunningham panel a month ago.
 
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Jonathan Edwards

"Gibberish"
Messages
5,256
Thanks for all this. One doctor suggested the Cunningham panel a month ago.

But she's just out of the hospital after the 6 th Hemmorhage. And they are so cheap with the blood here,only gave her one unit when she needed more, at least one more minimum.

We are so exhausted chasing this test that test this doctor that doctor this supplement that supplement, and nothing helping just getting poorer.

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.)
 

Kati

Patient in training
Messages
5,497
1) Thanks ever so much for your time and your concern. Thank you. I'm grateful for the confirmation that GI haemorrhage has nothing to do with ME.

2) The hydrocortisone was given to my daughter by a very well known CFS doctor in the USA who followed the work of Dr Jeffries ( the later arguing for the safety of hydrocortisone use). My daughter was flat on her back for two years unable to sit or stand. The doctor whom we saw ( after running around Canada and not getting anywhere) suggested that Cortef ( in her case compounded Hydrocortisone) would help.

Now I realize that the proper testing was not done, though morning cortisol was tested on a number of occasions. So she started with 5 mg and it kept going up as she got sicker. We saw several well known CFS doctors in the USA and without exception they kept reassuring me that hydrocortisone was used by ME patients because they had low cortisol.

It was when the haemorrhages began, and endocrinologists began to visit her bedside that we began questioning what the CFS doctors had prescribed.

Even at the Paracelsus clinic in Switzerland they suggested she needed hydrocortisone and bumped it up 20 mg. The saliva tests showed very abnormal cortisol readings.

Now does this mean that her adrenals have shut down somewhat? Obviously, the proper testing would need to be done.

But she's been bleeding so regularly and in the past 8 months, she has had 3 haemorrhages requiring multiple transfusions, as well as undergoing many tests, the hydrocortisone was increased in the hospital, to a stress dose for procedures. And though she is trying to wean it down, the process gets sabotaged by the next bleed.
( These episodes require a hospital stay from 8- 14 days generally.)

I have repeatedly asked physicians if the hydrocortisone could have caused these bleeds. Your comment suggests to me that it might be urgent to get to an endocrinologist and see if she really needs this hydrocortisone. I would prefer if she got off it.

3) The testing she has had is several colonoscopies, endoscopes, two balloon endoscopes: one from above one from below,CT scan, Meckels scan, 2 angiographies, and 3 video capsule tests. Of these only the video capsule test done in October of 2015 showed bleeding in the small bowel. By the time the hospital got around to do the angiography 3 days passed after the video capsule,despite my pleas to speed it up, as she bleeds intermittently during an episode.

Of the 6 bleeds two occurred in Canada, one in the UK, and 3 in the USA. The care was best in the USA, because we were in Miami or Tampa. They had the most resources. The care in Canada is so frightening,even though we live in a very large metropolis. The doctor told me during this last bleed that they didn't have access to a video capsule test! He told me resources go to cancer, primarily. They suggested that based on the video capsule of Oct 2015 done in the USA exploratory surgery was warranted. We refused because she is do weak, she is unable to walk,and is so underweight and frail. But in the follow up appointment we took the referral for the surgeon and will see what he says.

We sent the video capsule CD to the mayo clinic and the doctor suggested it might be a Gist, whereas the doctor in Tampa and here suggested AVM.

4) yes, it's a university based hospital but our system is " broken" to quote a GP I spoke with a week ago. It's virtually impossible to get to and to have time with the specialist or to get proper care in the hospital. I'd give anything to be in the USA, though I've heard Americans express the view that our Canadian system is better because it is free. Here twice now, in Toronto and in Montreal they sent her home with melena stool! Then she started to haemorrhage required an ambulance and ended up in ICU. They did it again just over a week ago. They sent her home and two days later we returned and then they finally admitted her. It's the worst medical system I have encountered.

5) my daughter does not take antiinflammatories. But if you think the hydrocortisone could be doing this, there is an urgency to address this, and to wonder if there has been erosion in the gut by these drugs. But her bleeds are profuse,with the hemoglobin having gone down to 6 in one episode. I don't know if that kind of bleeding presents with steroid use.

6) I mention you, Dr Edwards, in the family regularly. I wish I could bring my daughter, now an adult, to see you. Her life has been utterly destroyed by this savage disease.
7) I thank you for your comments and will try to set something up with an endocrinologist.
Thank you.
I am so very sorry @perrier for your daughter's situation, it sounds just horrendous. I concur with our canadian health care system, it is just horrible. Here in BC my dr says there is a 2 years wait to see a GI specialist. 2 years! Unless you show up in emergency with an appropriately urgent condition, there is no possibility to see a GI.

I am no doctor and I am in no way telling you to wean off the Cortef. It may be helpful it your daughter and in some patients it is helpful from anectdotes here on PR forums. But know that weaning off Cortef can induce depression an taking patients in a really dark place, so If this is something a doctor tells you to do, please do make sure that this weaning is done very, very slowly. Moreover it sounds like she is very severely affected, and her adrenals may not have been properly assessed. I hope she can be well taken care of by a knowledgeable endo.

Sending best wishes @perrier