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Help: scary relapse this weekend, fanting, rectal bleeding, nausea...

Discussion in 'General ME/CFS Discussion' started by Antares in NYC, Sep 9, 2013.

  1. Antares in NYC

    Antares in NYC Senior Member

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    Hi everyone,

    This past weekend I experienced a sharp and scary relapse, out of the blue, with some very unpleasant side effects.

    Let me explain as a preface that, since I got ME/CFS, I have had major IBS-like issues. One of them is unexplained bouts of rectal bleeding and cramps of unknown origin. This used to happen once every two years or so... recently it's been happening every 2 or 3 months. Since 2003 I have had 6 or 7 colonoscopies/ endoscopies with different doctors that did not reveal the reason for these bleedings (no Crohns, no IBD, no tumors, polyps, or infections, etc).

    This last July I had a new colonoscopy that revealed a minor ulcerative proctocolitis. This GI doctor gave me a strong antibiotic (Xifaxan), followed by weeks of probiotics. The severe bleeding went away quickly.

    Now, this is what happened this weekend:
    • Around thursday I started noticing random and heavy rectal bleeding again, several times a day. I know that a few things triggered these IBS symptoms in the past (like coffee, which I no longer tolerate, or Vitamin E supplements, or CoQ10, which gives me strange body reactions, etc).
    • By Friday night, I had been bleeding profusely several times a day. I can't calculate how much, but basically major bleeding at least 3 times each day, every time I went to the bathroom. I'm talking copious amounts of bright red blood.
    • My girlfriend and I had dinner, and soon after, I feel suddenly violently ill, very lightheaded and nauseous, fainting, like my blood pressure had dropped tremendously. I had to lay down quickly. A major headache developed, with a strong and very unpleasant inner ear pressure (like my head was going to explode), and major pressure in the back of my neck. The brain-fog also shot up considerably, to the point that I was slurring my words. I had zero energy, and crushing fatigue. I had relapsed from my usual 60% energy level to 20% or below.
    • I felt like I had a high fever, but my body temperature never rose above 97° F!
    • My girlfriend helped me get in bed. She was terrified. I spent the rest of the weekend in bed, in this awful condition. I didn't take any of my medications and supplements over the weekend, just in case.
    • This terrible relapse only started remitting on Sunday. The rectal bleeding is still happening, but it seems to be remitting as well, whatever it caused it.
    What is happening to me?

    This was terrifying. :( I suspect certain things trigger that odd IBS bleeding (coffee, certain fruits, vitamin E supplements, certain blood-thinners), but this episode was extreme. I think I lost a ton of blood between Thursday and Friday, and that probably caused a sudden drop in blood tension after dinner on Friday night.
    Still, this episode came with a clear increase of other ME/CFS symptoms at the same time (brain fog, inner ear pressure, intense cervical neck pressure).

    Today my energy level barely reaches 50%, an improvement over what I felt this weekend. The brain fog is still way thicker that it has been in a long time.

    Any suggestions? Anyone else experiencing anything this scary and, frankly, disgusting?

    You advice would be appreciated. I'm reaching to my doctors today, but just wanted to check with the board members and their wealth of knowledge about this awful disease.

    Thanks in advance.
  2. peggy-sue

    peggy-sue

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    This sounds absolutely terrifying! I would get yourself to a doctor asap.
    I'd have been taking myself off to A&E if this had happened to me.

    However, while you are saying you have lost a ton of blood, a little blood can go a very long way and look like a huge amount (you should see the mess made by just 10cc of blood spilled on a floor - it looks as if pints have been spilled).

    Bleeding from the rectum should always be taken seriously - but there are many innocent causes.

    You symptoms could have been caused by the loss of a lot of blood, but thankfully, this does not sound as if that was the case here.

    But don't take my word for anything! I'm only trying to help a little, my advice is get yourself to a doctor.
  3. peggy-sue

    peggy-sue

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    You also said you have a lot of IBS symptoms. Have you tried taking a daily dose of psyllium husk? It's soluble fibre - the same stuff as is in Fybogel. It helps both the runs and when you're bunged up, by adding (wet) bulk to your stools.

    My OH has IBS, I read a study which said taking daily Fybogel was very helpful for IBS, so I got him to start taking it every day, rather than just when he "needed" it.

    After about 3 months, his guts started behaving themselves really, really, well. He can even enjoy a bottle of wine or some decent beer.... with no retribution! I wouldn't say he's cured, but the daily dose of psyllium husk fibre keeps it well under control.
  4. Kati

    Kati Patient in training

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    Antares in NYC, maybe it's time to get a CBC ( compete blood count) to ensure you are not severely anemic from all this blood loss, as it could explain many of your current symptoms.
    WillowJ likes this.
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Antares in NYC

    I hope your doc is helpful today. This is not the kind of thing a doc should ignore. Have they checked you for clotting disorders anywhere along the road?

    I know it is hard to calculate how much blood you actually lost, but if you are already hypovolemic like many of us, losing blood could well affect many of your ME/CFS symptoms as low blood volume is a biggie for symptoms and certainly for brain fog.

    You mentioned feeling worse after eating. That is when a lot of blood will be drawn to the gut area to deal with digestion and thus away from the brain etc. Many notice that symptoms are worse after a big meal.

    Let us know what your doc says.

    Best wishes,
    Sushi
    WillowJ and taniaaust1 like this.
  6. roxie60

    roxie60 Senior Member

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    So scary. Definitely something wrong and I hate to say it but you need to see a Dr, maybe write down what you experienced and give them a copy just in case they have selective hearing since you have so much going on. When I was having IBS I definitely felt weaker and increased brain fog, sleepy after eating but I think it was related to eating wrong foods (ones I had become sensitive to as system broke down), had h-pylori (treated with OTC Jarrow Mastic Gum (reco by a fellow PR member) and lymposytic colitis. I feel so bad for you, all you want is some relieve and answers, I hope you get them soon, you need support from the medicos, I hope and pray you get some.
  7. Antares in NYC

    Antares in NYC Senior Member

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    Hi everyone,

    Thanks for your concerns. I'm waiting to hear back from my GI doctor, see what he recommends I do next. In the meantime, I wanted to respond to some of your thoughtful notes:
    Peggy-Sue, these strange bouts of sudden bleeding have been going on for years, as long as I've had ME/CFS symptoms. Not sure exactly what triggers it, but I noticed that certain foods or supplements would make it much worse.
    I've had a ton of different colonoscopies, endoscopies, and biopsies by different doctors, with no clear results. This summer my most recent colonoscopy showed a very mild proctocolitis, which went away with Xifaxan and probiotics.

    I think something has triggered it again, but I don't exactly know what it was. My guesses: vitamin E, certain foods I no longer tolerate, or coffee.

    The amount of blood I lost between Thursday and Friday must have been serious. We are not talking a few drops here, but the entire bowl looked bright thick red. Every time I had to rush to the bathroom, with sudden cramps, all that came out was blood. Sorry for being so graphic. It's very scary.
    I have been dealing with borderline anemic states for years. Since 2008, most of my blood tests come out with some serious vitamin and mineral deficiencies: Magnesium, B12, D, and C. The colonoscopies, analysis and studies done by my doctors have not provided the reason why my body is not absorbing nutrients. No food allergies, no Celiac disease, no Crohns, etc.

    I have learned in recent months (thanks to these PR forums) that many ME/CFS patients suffer of similarly unexplained vitamin deficiencies.
    Hi Sushi,
    It happened quickly after dinner, sudden fainting sensation, lightheadedness, pressure inside the ears, blurred vision and major headaches. For the rest of the weekend, I was basically bedridden, extremely fatigued and nauseous.
    I will look into the implications of being hypovolemic and CFS.[/quote]
    The brain fog got really bad (as bad as it gets, basically). I felt like a vegetable all weekend. What puzzles me is that there's nothing particularly incriminating that would justify these random bouts of intestinal bleeding. I don't what we are missing here; maybe there's something specific to ME/CFS that's playing a role in these scary episodes. When it happens, I get terrified for days at a time. We don't know what it is!

    Thanks for your concern and kind messages, everyone. I will keep you posted.
  8. rosie26

    rosie26 Senior Member

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    Antares in NYC

    Everytime it happens I would keep going back to A&E. They can monitor you there. Also too scary a thing for you to deal with at home. Just keep going back to A&E and let them keep an eye on you until a cause is found. x
    WillowJ and aimossy like this.
  9. Kati

    Kati Patient in training

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    Antares in NYC, at least get a CBC repeated. Obviously you have had significant blood loss over the week end. This may need to be replaced.
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    A&E in the States is the Emergency Room. Good insurance will cover it but without, it is a few thousand a pop!

    Sushi
    SOC likes this.
  11. rosie26

    rosie26 Senior Member

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    Didn't realize that Sushi, shocking. Different system where I am.
  12. roxie60

    roxie60 Senior Member

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    anxiety, fear, anger, frustration, confusion all a part of 'the experience' sadly. Hoping you get it figured out soon. This morning I had to get up to take the AM Synthroid and for some reason I still can't explain I kept falling to the left into doors and walls all the way to the kitchen, it was scary to be so unbalanced, another symp out of the blue and no explanation. Our bodies are so complex.
  13. Kati

    Kati Patient in training

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    roxie60 please get it checked out. It could be many things, but a stroke comes to mind. Things like that need to be checked out sooner rather than later.
  14. roxie60

    roxie60 Senior Member

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    It was very weird, I know I was trying to walk a straight line but felt weak in the legs but did not fall down, just fell into doors, walls. It was bewildering. Thx for the concern Kati but I went to bed got up about 4 hour later and no similar experience. Seem ok now. I just seem to have a lot more issues in the morning. But I will keep it at the fore front, if it happens again (I have to get up every morning now at 630 AM to take meds) I'll mention it to the Dr but I think my drs are symptom weary, too bad they cant imagine how weary I am....
  15. caledonia

    caledonia

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    My suggestion (besides the other suggestions) would be to do some alternative type stool testing to see if there are any bad gut bugs, parasites, etc. causing problems. It seems to me that with all the testing you've done, this avenue has not been covered.

    Two good tests are the Doctors Data Comprehensive Stool Analysis and the Metametrix GI Effects stool test. I have links to those in my signature. You don't need a doctor to order them and you can do them at home.

    The test results will tell you what herbs/meds can be taken if any bad bugs are found.

    I see you're in NY, which is very conservative about tests like these, so I don't know if you will be blocked, or if you can find a workaround if you are.
  16. taniaaust1

    taniaaust1 Senior Member

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    last time I was like that, the dr I was seeing at the time, paniced and rang an ambulance to take me to the big hospital.
    aimossy likes this.
  17. taniaaust1

    taniaaust1 Senior Member

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    I suffer from very similar and have got a lot of bleeding on a couple of occassions, it is scary to see blood FLOWING (not dripping) out of ones anus into the toilet, most of the time thou I just get a little blood on the loo paper other then the few scary bleeding incidences Ive had. The drs have put my issue due to constipation and haemorroids but none of them have actually ever looked (a fact which worries me all the more as my beloved great grandmother, I remember her dying of bowel cancer).

    I commonly get your other symptoms like you described and hence have a suggestion to make there. It is very likely you already have low blood volume. With low blood volume comes other issues too, one being POTS, POTS can be triggered off BY EATTING so one can crash right after eatting (due to the blood going to the digestive system leaving even less going elsewhere). This then can cause a faint, more memory loss, I have trouble speaking and will slur my words, feeling violently ill, nausous and lightheaded (all the symptoms I can get with a bad POTS crash along with other symptoms in my case I can get with it too eg I can blind with it.. severe POTS crashes can be very nasty things). After such an attack or sometimes during it, I get a headache happen too. Anyway with what you described there with those things, sounds just like my more severe POTS crashes. (the POTS then can trigger off my ME afterwards due to the strain a severe POTS crash puts on my body).

    Anyway, consider that your blood loss affected things more and could caused something like a big POTS crash.
  18. Antares in NYC

    Antares in NYC Senior Member

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    Hi Tania,
    Yes, it's absolutely terrifying when it happens. I have no idea what triggers it, but when it happens it's beyond disturbing.

    The POTS symptoms you describe are similar to what I felt last Friday, but I had the distinct feeling I was getting also a major drop in blood tension. The nausea was unbearable. I basically spent the weekend in bed, a complete mess.

    As a follow up: my gastrointestinal doctor kindly saw me today, as I called him and explained the scary situation. He is very puzzled, but wants to do an abdominal CT scan with contrast, and afterwards move on to other tests.
    He looked very concerned and confused about this, since the biopsies and colonoscopies didn't show anything that could justify this extreme bleeding. (For the record, he has a great reputation as a gastro doctor, and is a genuine nice guy).
    WillowJ and taniaaust1 like this.
  19. peggy-sue

    peggy-sue

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    I'm still in shock that you need insurance to go to an Emergency Room. I did think there was some system that allowed help in emergencies even if you can't pay. That's... inhuman.

    I'm very glad to hear you've seen a doc who is taking this seriously. It needs taken seriously.
    Beyond, taniaaust1 and rosie26 like this.
  20. Antares in NYC

    Antares in NYC Senior Member

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    I have some additional information on what happened on Friday. The fainting and blood pressure drop was a combination of two factors:
    1. the profuse bleeding that took place two days prior to the fainting spell.
    2. that very Friday I started taking the supplement NAC (N-acetylcysteine).
    I took another N-A-C 500mg capsule yesterday and it made me feel very nauseous, lightheaded, and felt a headache with pressure inside my ears coming up. It wasn't as dramatic as it was last Friday, but the spectrum of symptoms was quite similar. I just read online that NAC can produce drops in blood pressure and similar side effects. I guess I either don't tolerate NAC well, or I need to adjust the dose.

    Has anyone experienced side effects or bad reactions to N-A-C before? Any advise on how to safely take this supplement to avoid these complications?

    PS: still no clue on these random bouts of profuse bleeding, which have been occurring since at least 2003. My doctor has scheduled a CT scan and additional tests for next week.
    taniaaust1 likes this.

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