Gi Bleeding

[Lethargic Smiles]

I was just wanting to get people's thoughts while I wait to hear from my doctor.

Short Version

My POTS gets terrible when whatever this problem is pops up. Something causes bleeding in my upper and lower GI tract and my lymph system goes crazy over it. I have a history of small inner hemorrhoids and suspected bleeding ulcers. Thoughts?

Long Version

The past few weeks, I've felt really sick. My lymph nodes have been swollen in my armpits and throat. I started getting stabbing abdominal pain in the upper quadrants of my stomach. It isn't effected by position, how much I eat, or what I eat. I ignored it as we all know we get all sorts of random symptoms from POTS flares. Well, today there was blood in my stool.

A few months ago, I had issues with bleeding in the GI tract. It started with a worsening of POTS symptoms, abdominal pain and blood was found via an occult stool test, indicated the bleeding was high up in the GI tract. I was started on a proton pump inhibitor while I waited to get into a GI. A few weeks later, blood was visible in my stool. I became mildly anemic. By the time I had the colonoscopy/endoscopy, the bleeding was resolved. The doctor found a few small inner hemorrhoids and that is it. No ulcers. The problem was deemed to have been bleeding ulcers that healed. I was encouraged to not use NSAID pain relievers, sit up after meals, and avoid acidic food on an empty stomach.

I've had on and off abdominal pain for 2 years, but the bleeding issue is relatively new. The blood in my stool could just be hemorrhoids. Whatever is going on really makes my lymph system crazy.

Any thoughts or experiences would be appreciated!

[Katybug]

Have you been very thoroughly evaluated for Krohn's and/or colitis which are both autoimmune GI related diseases that could both cause what you are describing? If not, I would start there. Have friends with one or the other and they have flares that make them very ill.

[Hope]

The lymph nodes swelling would make me think maybe there is more than one thing going on, or it's not internal hemorrhoids and there is something else going on.

[Lethargic Smiles]

Hey Katy, what would count as being thoroughly evaluated? I've had an irritable bowel blood test as well as a colonoscopy and endoscopy. My Mom has ulcerative colitis that was missed by 2 colonoscopies, but the doctor who did mine is the one who found hers and was aware of this going in.

Hope, I feel the same way. Ever since I got dysautonomia following mono in winter 2008, I've had issues with swollen lymph nodes. The ab pain started in fall 2011. I was not diagnosed with dysautonomia until 2012. The bleeding started in winter 2013. The bleeding and severe abdominal pain now coinciding with the lymph node flare ups each time I have gotten the flare ups this year just makes me nervous. I am fairly certain the bleeding is a hemmorrhoid issue since it was red rather than dark like it is when it comes from higher in the GI tract.

The GI office called back and suggested Prevacid until they can fit me in in 2 weeks. This was despite me explaining my main concern being the lymph nodes and ab pain coinciding... And the ab pain mostly being on the lower edge of the upper right quadrant. The nurse was good intentioned and said if the pain is too severe or the bleeding excessive to call back. It did not seem as though she had consulted the doctor. Good intentions don't make me any less frustrated...

[E Soskis]

Have you had more than a GI work-up? - what about CT scans or ultrasounds? - any lab work to track down the cause of the swollen nodes? - what is your WBC count? - did a pathologist look at a blood smear for clumps of red cells or clotting disorders? - how about your spleen - is it enlarged? - what about your liver? - are your liver function tests OK? - I mean really, there is so much more that needs to be considered if this problem is not going away with the treatment tried already. Swollen lymph glands mean your immune system is working over-time - so, why is it so active? - has it been activated due to an infection or another disease process? - If your physician is not willing to work you up properly, ask for a referral to someone who will - how about an internal medicine specialist? - the key here is that you are not getting progressively better but, progressively worse.....and whatever it is, it is triggering a flare of your POTS so...something's just not quite right.....talk to your doc....

[Lethargic Smiles]

E Soskis, your right about how the lymph nodes being swollen is a clear sign that needs looked into. I have just gotten so used to them being swollen off and on for 5.5 years now that I quit even thinking much of it. I have seen infectious disease doctors, immunologists, internal medicine doctors, gastros, integrative medicine, rheumatologist... Sigh.

Over the past 18 months, I've had liver/gallbladder/pancreas tests. I've had a full abdominal ultrasound, a CT scan, and a gallbladder test (I have a low ejection rate but its still good enough to keep). The GI issues going along with the lymph node symptoms is relatively new and I am guessing a sign that whatever the root cause is has progressed one step further. I plan to really press the gastro when I go in 2 weeks. Thank you for lighting the fire.

[Katybug]

I am aware of these diseases as I have friends with them. Although I don't always rely on the accuracy of Wikipedia, I just looked up ulcerative colitis on there and the mayo website. They had comparable info on how to diagnosis including blookwork that should be done in addition to endoscopy /colonoscopy /biopsy info. I'm on my phone and don't know how to post links from here. In the meantime, I'll check with my friend and see how they figured out her colitis.

[Guest maia]

Have you tried going gluten free?

[lynnie22]

Hi Jackie,

I have recently been having GI problems myself, also aggravating of course the POTS symptoms, so this all resonates -- although the swollen lymph nodes sound like a concern not to be ignored. I agree that the blood being red in your stools seems to indicate something lower, although I can't imagine that hemorrhoids are the source of all of this. So, did the swollen lymph nodes start with the mono-- and has never really resolved? Now there are going to be a lot of opinions because there's a lot going on -- but the doctors that you've seen I think you need to see again -- at least as far as infectious disease and the gastroenterologist who you're scheduled with. It sounds like they do need to do a thorough scanning of your gastro/ab system. I am reading a book on the digestive system that makes a good case for most diseases beginning with the gut. Have they checked for infections/imbalances?

It is suspicious that first you were bleeding higher up and now further down. It to me sounds very inflammatory....yes I agree with E. that you should ask your doctor to do a full check up.

[Lethargic Smiles]

You guys are great!

Katy -- Thank you! I also often use Wikipedia as a starting place for research.

Maia -- I don't eat gluten, soy, dairy, egg, and only eat meat when I really crave it (about once every 6 weeks or so). I also limit any sort of refined grains and reserve them as treats. Thank you for the suggestion. It has been very helpful for bloating, regularity, and such, but not helpful at all for the abdominal pain and lymph node issues.

Lynnie -- The lymph nodes swell at least three times a week during "good" spurts and are constantly swollen during flares. It just started with swollen throat lymph nodes following mono. After that, anytime I'd overdo it, my throat lymph nodes would swell. So during flares, I tend to get a few hours of peace and as the day goes on, they become more and more swollen. It's not major, deforming swelling, but it is definitely there and is able to be felt. Over time, the armpit lymph nodes joined the party. At times, I cannot wear anything except loose clothing because the pressure on my armpits is painful. I've been checked for tons of infectious diseases, immune problems, and even chronic epstein barr virus... nothing!

I agree gut health is so important. Currently, I take a quality multi-strain pro-biotic, ginger, and occasionally take enzymes for more difficult to digest foods. I eat small meals and have eliminated foods I've been shown to be IgG intolerant to. I don't eat acidic foods (tomato for example) on an empty stomach and combine it with foods to balance out acidity. I limit simple carbs. Are there are other things I should be doing? I really hope you are able to resolve your GI issues! You've got enough on your plate already.

I'm hoping to come up with a thing or two I should ask my doctor to test for. I know that is her job but you know how we crazy patients are. I'm pretty bummed this is hitting me right now because I leave for Dallas to go to The POTS Treatment Center in two and a half weeks and will be there for two weeks.

Thank you everyone for helping me brainstorm -- keep the ideas coming!

[lynnie22]

Hi, Well it sounds like you are doing a lot, but swollen lymph nodes are in my book, some sort of red flag, or a flag that says that your body is fighting something. So there are the swollen lymph nodes, a sign of a possible infection or inflammation (inflammation, for sure), ulcers which are often caused by a bacterial infection or the result of an inflammatory process in the gut. So your body has been trying to fight something since you had mono but what? In their biopsies, did they check for different infections in your gut? Just curious. I will research my book and see if I can find anything insightful. I wish I had better answers for you, but my gut is telling me that your gut has some sort of infection or inflammatory process that hasn't been named yet. And by the way, do they know what caused your ulcers?

[Katybug]

Jackie,

I hate to sound preachy but I wouldn't wait 2 weeks to see the GI or at the very least a PCP. They need to at least run the blood work while you are in a flare so it will pick up anything that gets out of range when these symptoms occur. The doctors know this and blowing you off is just laziness on their part.

As a side note, my friend with colitis, just switched GI's because here former one was blowing her off. She's been in what we thought was a flare for over 6 months plus she ended up with an abscessed fistula that finally made it's way out of her private area (seriously gross and painful, diagnosed by an Urgent Care doc and told she needed to follow up asap with her GI.) He blew her messages about this off for 2 weeks. She finally found a new GI who happens to take a special interest in GI autoimmune issues. Well, long story short, the "flare" was not a flare at all (although she does really have ulcerative colitis), it is actually a chronic e. coli infection in her gut that was showing on the labwork from back in January. The old doc completely missed/ignored it. Now, she's totally screwed up and has to be on antibiotics that are super strong and so expensive that insurance won't cover them (I've never even heard of them before.) And, of course they won't know until they get rid of the e. coli issue how much damage it has done in the way of aggravating her colitis. So, my thought on that are that it probably wouldn't hurt to look into the e. coli possibility either.

[Lethargic Smiles]

Thanks for keeping your eye out Lynnie. They checked my stomach for h pylori, but I believe that is it.

Katy, you're right. I just emailed my PCP who always runs a lot of tests for me prior to referring me to any other doctor to let her know the latest. She has always been understanding of how difficult it can be for me to come into the office amd works with me for free via email when it is viable. She loves learning new things and reading the latest research -- that type of doctor. I will mention bacterial infections when she emails me back. The gastro is great and aware of how Dysautonomia causes so many GI type symptoms. I'm hoping this is a sign she is a thinker and will have some ideas... Between the two of them, maybe something can be figured out. That is horrible about your friend. I don't know how insurance can get away without paying if its the only option for treatment. Poor thing!

[lynnie22]

That's terrible about your friend, Katy! I agree about not waiting. I had an endoscopy two weeks ago for increasingly uncomfortable symptoms. Have an appt with dr in a few days but he wouldn't give me any info until I see him. Very annoying. If there is a choice I think you need to follow up as soon as you can.

[Lethargic Smiles]

My PCP said she thinks it would be worthwhile to see a hematologist as they are good at doing work ups for lymph nodes. In the meantime, she has my symptoms on her mind and is racking her brain for tests to run (outside of the stuff the gastro will do). I am amazed this has never been recommended to me before!