GI Hemmorhage

[Jonathan Edwards]

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).

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,

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.

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.

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 wish I could bring my daughter, now an adult, to see you.

I wish I could be of more use but I am a retired rheumatologist with little or no real experience of ME/CFS during my working life. I got into this rather late!

All I can really do is comment from my experience as a general physician, mostly a while back. Recurrent major bleeds does not sound very likely to be due to steroids at this dosage, especially if small intestine. Nevertheless, they may contribute and my understanding is that it is generally agreed that steroids have not been shown to be of good risk/benefit for ME in the long term and as far as I know most pubic sector physicians would not prescribe. I worry about the private sector and 'well known CFS doctors in the USA' to be honest. @charles shepherd may have useful comments to make but my thinking is that someone with ME/CFS would do well to try to get off steroid support.

A dose of 15mg cortisol is likely to have suppressed a lot of endogenous adrenal function and I suspect done nothing more than replace the natural secretion with the same amount by mouth. Withdrawal can lead to low mood but with this sort of dosage it should be possible to withdraw over a period of months. I would advise seeing a university hospital endocrinologist who is not otherwise involved in ME/CFS.

Repeated major bleeding does sound to me quite likely to be due to a vascular malformation (essentially like a birth mark or port wine stain in the gut wall of no importance other than it can bleed). Laparotomy may be needed to identify and remove the problem although these days they are often dealt with by interventional radiology.

It sounds as if the Canadian system is in the same state as in the UK - I cannot understand why increasing taxation and paying the going rate for a decent health service is not seen as a desirable way of 'stimulating growth' or 'boosting the economy'. It would create thousands of jobs and lots of tax revenue and spending money to support businesses if that is what people want. But we are stuck with inadequate resources.

The rule is that I should not give medical advice and I may have strrayed outside that but all I think I am saying is to get a good endocrine opinion - as you already plan - and that the advice on further investigation of the bleeding site sounds sensible. I hope you find someone who can ease your way out of all this. I know what it is like, if an slightly different contexts from my own family life.

 

[perrier]

I wish I could be of more use but I am a retired rheumatologist with little or no real experience of ME/CFS during my working life. I got into this rather late!

All I can really do is comment from my experience as a general physician, mostly a while back. Recurrent major bleeds does not sound very likely to be due to steroids at this dosage, especially if small intestine. Nevertheless, they may contribute and my understanding is that it is generally agreed that steroids have not been shown to be of good risk/benefit for ME in the long term and as far as I know most pubic sector physicians would not prescribe. I worry about the private sector and 'well known CFS doctors in the USA' to be honest. @charles shepherd may have useful comments to make but my thinking is that someone with ME/CFS would do well to try to get off steroid support.

A dose of 15mg cortisol is likely to have suppressed a lot of endogenous adrenal function and I suspect done nothing more than replace the natural secretion with the same amount by mouth. Withdrawal can lead to low mood but with this sort of dosage it should be possible to withdraw over a period of months. I would advise seeing a university hospital endocrinologist who is not otherwise involved in ME/CFS.

Repeated major bleeding does sound to me quite likely to be due to a vascular malformation (essentially like a birth mark or port wine stain in the gut wall of no importance other than it can bleed). Laparotomy may be needed to identify and remove the problem although these days they are often dealt with by interventional radiology.

It sounds as if the Canadian system is in the same state as in the UK - I cannot understand why increasing taxation and paying the going rate for a decent health service is not seen as a desirable way of 'stimulating growth' or 'boosting the economy'. It would create thousands of jobs and lots of tax revenue and spending money to support businesses if that is what people want. But we are stuck with inadequate resources.

The rule is that I should not give medical advice and I may have strrayed outside that but all I think I am saying is to get a good endocrine opinion - as you already plan - and that the advice on further investigation of the bleeding site sounds sensible. I hope you find someone who can ease your way out of all this. I know what it is like, if an slightly different contexts from my own family life.

Thanks again Dr. Edwards. Of course would would prefer interventional radiology.

 

[Hutan]

@Jonathon Edwards, the corticosteroid issue sounds well worth checking out. It's great you are able to provide those comments.

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

Since getting what I believe is ME, I have had two significant gastrointestinal bleeds. The first bleed was about a year after a gastroscopy and colonoscopy for diarrhoea and other symptoms. Those investigations identified nothing untoward. Before getting ME I had not had gastrointestinal bleeding or anything that might have caused it, such as haemorrhoids. In both cases the bleeds occurred after a week of having visitors stay - times when I had done much more than I usually do and had PEM. Each bleed was preceded by a few hours of feeling very nauseous and lower back pain.

So, I can't help but feel that the bleeds have something to do with my illness, whatever that illness may be. (And btw, my illness is otherwise very typical ME symptom-wise).

I have also had recurrent, relentless cold sores since getting ME. The frequency was quite unlike what I had experienced prior to getting ME. I had a cold sore all the time. A 2 year course of Valtrex seems to have stopped them. My point in mentioning this is that frequent cold sores aren't one of the symptoms of ME either. But possibly an inability to deal with latent or subsequent infections properly is. And so perhaps the gastrointestinal bleeding was caused by a pathogen that I was not dealing with well enough when suffering PEM.

I don't think I am alone in having gastrointestinal bleeding subsequent to developing ME symptoms although yes, it doesn't seem very common.

 

[TigerLilea]

Since getting what I believe is ME, I have had two significant gastrointestinal bleeds. The first bleed was about a year after a gastroscopy and colonoscopy for diarrhoea and other symptoms. Those investigations identified nothing untoward. Before getting ME I had not had gastrointestinal bleeding or anything that might have caused it, such as haemorrhoids. In both cases the bleeds occurred after a week of having visitors stay - times when I had done much more than I usually do and had PEM. Each bleed was preceded by a few hours of feeling very nauseous and lower back pain.

I have had CFS/ME for the past 25 years and I've never heard of anyone having a GI bleed related to this illness. We can't blame every symptom we get on CFS. Sometimes we do get other health issues that have no relation what-so-ever to CFS.

 

[Hutan]

I understand what you are saying @TigerLilea. I don't know if it's related to the rest of my symptoms. I'm just reporting my experience.

http://forums.phoenixrising.me/inde...-fainting-rectal-bleeding-nausea.25178/page-3

@Antares in NYC reported the following on that thread:

Well, several colonoscopies and endoscopies later we still don’t have a clear idea of what causes these strange bouts of profuse bleeding. The colonoscopies have at least discarded any scary problems. All of the tests, with the exception of finding a small polyp, came out fine. No major issues in upper or lower intestinal tracts.

What my gastro doctors have determined is that the intestinal bleeding may be the result of some sort of autoimmune mechanism.

 

[Kati]

@Hutan the thing is, everybody in the general population has a certain chance to get rectal bleeding or GI bleeds. I do not think that any publication has been written on that matter as it relate to ME.

 

[Hutan]

I have had CFS/ME for the past 25 years and I've never heard of anyone having a GI bleed related to this illness.

TigerLilea, I probably wouldn't be using 'let me tell you about my rectal bleeding' as a conversation starter if I met you at say a Millions Missing event. Only the GP where I used to live and my husband know - so it's possible that it is more common than supposed in the ME/CFS population, although undoubtedly still not common. I was just flagging it.

@Kati, yes, got it.

 

[kangaSue]

Isnt bowel ischemia associated with substantial problems in the GItrack caysed by hypovolemia and POTS?

Bowel ischemia is certainly causing me substantial problems from chronic gastroparesis and small bowel pseudo-obstruction.

It can be caused by hypovolemia during toxic shock in the critical care arena as in Acute Mesenteric Ischemia (AMI) and AMI can readily diagnosed in the population that have a rapid onset of symptoms but from my experience, it appears that few doctors realize that bowel ischemia also occurs as Chronic Mesenteric Ischemia (CMI) in the outpatient population or even knows that it's widely reported in the medical literature as commonly occurring in some with chronic GI dysfunction in many conditions including even just IBS.

It occurs from any cause that impairs the blood flow to the bowel, more commonly it's found as occlusive causes of the mesentery arteries or blood clot in the mesenteric veins but my particular affliction is Non-occlusive Mesenteric Ischemia (NOMI) and presumed to be from spasm of the mesentery artery microvascular network in connection with having low blood pressure. NOMI accounts for about 30% of cases of CMI but is an easy one for doctors to fob off being non-occlusive but also because there is rarely any adverse blood pathology to aid diagnosis until such time as the bowel is turning necrotic. About the only thing I'm consistently seeing to raise suspicion of possible bowel ischemia is the finding of bowel wall thickening with radiology investigations, something that my GI decided was of little consequence until my insistence on getting a colonoscopy done confirmed I had NOMI.

Demand for blood flow to the bowel increases substantially during the digestion process and can result in bowel ischemia when the demand is not met but, as preserving skeletal muscle is a higher order function in human physiology, I'm surprised that intestinal ischemia is not more widely reported in ME/CFS where there is already a problem with getting enough blood to the muscles.

 

[kangaSue]

She has had more colonoscopies, balloon scopes, and scans than anyone I know. On a video capsule they saw bleeding in the small bowel. But the area is not accessible so they want to go into the intestines.

Has Ischemic Colitis been considered as a cause of the GI bleeds. It's usually a self limiting condition for most people but can go on to become a chronic condition with periodic bleeds during an acute flare, I'm not sure what volume of blood loss can occur with it though.

One suggestion I can make is to have any scans reviewed for sign of bowel wall thickening. This is a finding still suspicious of an ischemic cause in the absence of any other blood pathology but a finding I have found from personal experience is one GI's can decide is of little consequence when there is nothing else to aid with a diagnosis

Does your daughter also have chronic GI dysfunction with pain issues.The intestinal mucosa layer is prone to ischemia, especially during the digestive process where the blood flow requirement to the mucosa layer is tripled and if not, met can result in ischemic pain about 30 minutes after eating.

 

[Hutan]

I opened this thread with trepidation this morning. But what I got was a revelation. Thank you @kangaSue for explaining the issue that @Justin30 first raised.

Long before I knew about orthostatic intolerance, I was choosing to lie on the sofa, with my legs raised, after a meal. (I now have a diagnosis of POTS.) After meals, especially the evening meal, I often get a very uncomfortable pressure/pain in my abdomen. It can be bad enough to make walking and breathing painful and bending over impossible. It was scary initially but now I know it will usually pass in an hour or two and so just wait it out.

I prepare the meals and so, by the time I sit down with a meal, I am often a bit dizzy. My pulse pressure will often narrow significantly during the preparation time. So, it makes sense to me that a lack of oxygen to the gut could be causing the post-prandial pain.

Whether that is the cause of my bleeds, of course I don't know. But it holds together as a possibility, given the two times the bleeds occurred I had been pushing well beyond my usual activity levels for over a week and had been eating larger evening meals than normal with my visitors (and sitting at the table to eat the meals, rather than reclining on the sofa).

Sorry @perrier, I hope you don't see this as a diversion from the issues with your daughter, which are clearly much more severe than anything I have.

I'm surprised that intestinal ischemia is not more widely reported in ME/CFS where there is already a problem with getting enough blood to the muscles.

My experience makes me think intestinal ischemia should be more widely considered in the ME/CFS population.

 

[perrier]

Bowel ischemia is certainly causing me substantial problems from chronic gastroparesis and small bowel pseudo-obstruction.

It can be caused by hypovolemia during toxic shock in the critical care arena as in Acute Mesenteric Ischemia (AMI) and AMI can readily diagnosed in the population that have a rapid onset of symptoms but from my experience, it appears that few doctors realize that bowel ischemia also occurs as Chronic Mesenteric Ischemia (CMI) in the outpatient population or even knows that it's widely reported in the medical literature as commonly occurring in some with chronic GI dysfunction in many conditions including even just IBS.

It occurs from any cause that impairs the blood flow to the bowel, more commonly it's found as occlusive causes of the mesentery arteries or blood clot in the mesenteric veins but my particular affliction is Non-occlusive Mesenteric Ischemia (NOMI) and presumed to be from spasm of the mesentery artery microvascular network in connection with having low blood pressure. NOMI accounts for about 30% of cases of CMI but is an easy one for doctors to fob off being non-occlusive but also because there is rarely any adverse blood pathology to aid diagnosis until such time as the bowel is turning necrotic. About the only thing I'm consistently seeing to raise suspicion of possible bowel ischemia is the finding of bowel wall thickening with radiology investigations, something that my GI decided was of little consequence until my insistence on getting a colonoscopy done confirmed I had NOMI.

Demand for blood flow to the bowel increases substantially during the digestion process and can result in bowel ischemia when the demand is not met but, as preserving skeletal muscle is a higher order function in human physiology, I'm surprised that intestinal ischemia is not more widely reported in ME/CFS where there is already a problem with getting enough blood to the muscles.

Thanks for this interesting post. But what did colonoscopy actually find. What precisely did they see.

 

[kangaSue]

Long before I knew about orthostatic intolerance, I was choosing to lie on the sofa, with my legs raised, after a meal. (I now have a diagnosis of POTS.) After meals, especially the evening meal, I often get a very uncomfortable pressure/pain in my abdomen. It can be bad enough to make walking and breathing painful and bending over impossible. It was scary initially but now I know it will usually pass in an hour or two and so just wait it out.

There are a couple of things involving compression of the mesentery arteries that you should check out too as a cause of mesenteric ischemia, Superior Mesentery Artery Syndrome and Celiac Artery Compression Syndrome. This is a related discussion on them and NOMI https://www.inspire.com/groups/g-pa...s-doctors-surgeons-for-cip-intestinal-issues/

Whether that is the cause of my bleeds, of course I don't know. But it holds together as a possibility, given the two times the bleeds occurred I had been pushing well beyond my usual activity levels for over a week and had been eating larger evening meals than normal with my visitors (and sitting at the table to eat the meals, rather than reclining on the sofa).

Even some superbly fit endurance runners can induce GI bleeds because of Ischemic Colitis with the shifting of blood flow away from the stomach to preserve skeletal muscle function during stressful exercise.

I have only ever had a couple of very minor bleeds with Chronic Mesenteric Ischemia, GI bleeds seems to be more common to Ischemic Colitis. As a precaution, it would pay to get a Doppler Ultrasound of the mesentery arteries to check for any increased flow velocity that can indicate an impaired bowel blood flow to the bowel. My SMA artery velocity was borderline elevated even without having an occlusive cause for the ischemia.

 

[kangaSue]

Thanks for this interesting post. But what did colonoscopy actually find. What precisely did they see.

Basically, the state of the intestinal mucosa was seen to be reduced to the consistency of blotting paper at the transverse colon, consistent with chronic ischemia when it's not found until an advanced state of disease. The colonoscopy was aborted at this point because the scope perforated my bowel. Mucosa damage can occur anywhere between the duodenum and transverse colon with advanced disease so it's not known how extensive mine actually is and no surgical repair was considered, just had to hope things healed up of their own accord, which it did.

I couldn't convince my GI to even consider it might be intestinal ischemia in the first place until after my more sympathetic G.P. agreed to prescribe a trial of nitrate vasodilators when I learned that you can sometimes have a noise in an artery called a bruit when blood flow is somehow impaired. He could hear it at a point about halfway between the belly button and where your ribs join in the middle. The vasodilators improved the symptoms of gastroparesis quite measurably.

When I later mentioned a bruit to a couple of GI's and a GI surgeon, they all said they heard it but didn't place any importance on it as they just thought it was an artifact sound from the aorta because I had lost so much weight. Sometimes Dr Google is worth his weight in gold!

 

[kangaSue]

@perrier, I don't know if coagulation studies would already rule this out. I can't recall the details or gist of it but I remember someone mentioning something about a fault with the natural production of heparin in some people with ME/CFS so maybe that could lead to GI bleeds for some from small bowel intramural hemorrhage. This can show up on a CT scan as short segment bowel wall thickening as opposed to long segment thickening that is seen with intestinal ischemia.
http://www.ncbi.nlm.nih.gov/pubmed/20517773
http://www.ncbi.nlm.nih.gov/pubmed/12490499

 

[taniaaust1]

I don't think I am alone in having gastrointestinal bleeding subsequent to developing ME symptoms although yes, it doesn't seem very common.

i think the severe group of us has been so little studied that its hard to know exactly what complications may occur with ME and when something unusual does happen, doctors are generally reluctant to think it may be a complication of severe ME (ive had optic disc swelling show up on a scan which I believe is a complication of ME due to my swinging BP which at times goes very high. This then didnt appear on followup so then they dimissed the scan as being taken at a bad angle causing it to look swollen).

perrier, you sound very afraid of your daughter having surgery re her current very poor state. The thing is all these bleeding crisis with then having to be in hospital due to them (and hospital is extremely bad for ME I can attest to that, the noise, the lights, the extra stress there).. may be doing even more harm. Often with us there isnt any good option so we just have to move forward and do what needs getting done. To not do so means her condition may just progress and then she'll need surgery when she's even worst then she is now.

I know how hard it is for ones child to need risky surgery (my daughter when she was young had to have risky surgery about 17 times, every 2-3 mths, due to a virus causing issues which would of gone life threatening if she didnt have the surgery.. in our case it was actually lazer accupuncture which finally fixed the issue as I ended after all that surgery turning to alternate things in desperation before she had to have yet another one. Crazyily one treatment of that fixed the major issue she had for years).

 

[perrier]

@perrier, I don't know if coagulation studies would already rule this out. I can't recall the details or gist of it but I remember someone mentioning something about a fault with the natural production of heparin in some people with ME/CFS so maybe that could lead to GI bleeds for some from small bowel intramural hemorrhage. This can show up on a CT scan as short segment bowel wall thickening as opposed to long segment thickening that is seen with intestinal ischemia.
http://www.ncbi.nlm.nih.gov/pubmed/20517773
http://www.ncbi.nlm.nih.gov/pubmed/12490499

This is very interesting. Try telling them in a Canadian hospital to investigate this.

 

[parabola]

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

Is the blood red or black? Constant or with bowel movements, mixed in or alongside etc?

Also why the cortef? Have you been advised to stress dose? I'm only guessing but 15mg could be enough to shut down endogenous steroid production

 

[parabola]

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

 

[parabola]

Stool is tarry black, or wine colour. Sometimes red blood comes along with this when the bleed is very heavy.
A CFS doctor, famous, put my daughter on this. Now she's trying to wean down but is having huge trouble.
But finding medical help in this backwater called Canada is like Parzival looking for the Holy Grail

See my second post, my best guess is her adrenals may have become dependent on it and she could be having adrenal (Addisonian) crisis, alternatively she had Addison's all along and that's why cortef was prescribed. Either way she needs a synacthen test if she hasn't had one to rule this out as a cause. Did the doctor advise 100mg cortef as a stress dose (e.g. if she gets an infection)? Does she have hypoglycemic episodes and abdominal/back and leg pains with the bleeding? Any shaking, vomiting, altered consciousness?

 

[kangaSue]

This is very interesting. Try telling them in a Canadian hospital to investigate this.

I've had similar frustrations in the Australian public hospital system when I suggested they need to test me for bowel ischemia. That went down like a lead balloon initially and wasn't made any easier with the G.I. dismissing as unimportant the finding of bowel wall thickening mentioned in the report. Luckily, my G.P. was much more co-operative in wanting to get it ruled in or out and could order further testing himself.

Are you able to access a copy of the radiology reports, it should at least mention any finding of bowel wall thickening. If you have the CT scan pictures, any G.I. doctor should be able to interpret the results I would think.