I’m going to write a blog later all about the fun experience of preparing and getting these tests, but for now I just wanted to let everyone know the results. The best news is this: my colon was clear of any signs of colon cancer. It runs in both side of my family so I was worried about this! Is it vein that one of the first things I thought was “I just got my hair long again and now it is all going to fall out from cancer treatment!” Personally, I think it was a coping mechanism. It is way easier to think about losing your hair than it is to think about having cancer. I told my friend Molly this thought and she said if that happened, she would give me her hair. Isn’t she sweet?
The doctor saw a lot of swelling/inflammation in my stomach and lower esophagus. This is known as gastritis and esophagitis. They can cause a lot of pain, so that explains my abdominal pain. She suspects I had a bleeding ulcer and that is what caused the initial bleeding I had about 6 weeks ago. I have been taking Prilosec since then, so it would have healed. She thinks the bleeding lately came from internal hemorrhoids. All a hemorrhoid is, is a swollen vein. When it becomes irritated, it can bleed. Since it isn’t causing me pain or anything, it isn’t a big deal. Almost half of all people will experience a hemorrhoid in their life.
So the main current GI issues are gastritis and esophagitis. There’s so many things that can cause these problems. The gastritis could be from stress. At the end of January, I definitely was under a HUGE amount of stress. I think it is pretty impressive my life was so stressful it potentially caused internal bleeding! Something that isn’t helping the inflammation is the pint of tomato juice I drink first thing in the morning on an empty stomach, before taking all my medications. She said while this wouldn’t have caused gastritis, it could be irritating the condition.The esophagitis could be acid reflux, or could just be the fact I lay down so much because of POTS. When I lay down, it allows the stomach acids to sneak back up into my lower esophagus. She said I should be upright for 2 hours after eating. I am pretty sure the issue is lying down and not acid reflux because I never get heartburn or feel any acid coming up my throat.
Her suggestion (if I couldn’t just not drink tomato juice) for treating the gastritis is to take Prilosec on an empty stomach, first thing in the morning. I didn’t know to take Prilosec on an empty stomach. Apparently it makes it work significantly better than when taken with or after food. Half an hour after taking Prilosec, I can drink my tomato juice but it must be with food. This all should help my stomach offset the acidity of the tomato juice and not make the gastritis worse. I refuse to just not drink tomato juice because it makes me feel so much better. Days when I don’t have it, I can tell a huge difference. I don’t want to drink Gatorade because the Mayo Clinic doctors said the simple carbohydrates worsen inflammation in the body. I don’t need that. I don’t want to drink “diet” Gatorade (G2) because I think all of the chemical in diet drinks are dangerous. I could very easily go on a rant about all the reasons diet drinks are terrible, but I’ll save that for another day. Broth isn’t really cost effective and salt pills (according to May Clinic doctor) don’t work as effectively as getting the salt from food does. I’m pretty sure that once the gastritis is cleared up, I can quit taking Prilosec and just make sure I eat food with the tomato juice. Another rant I’d like to go on is the dangers of low stomach acid and how the fact I am LOWERING the amount of acid in my stomach really bothers me. Again, I’ll save it for another day.
Like I said, for the esophagitis she suggested ensuring I’m upright for 2 hours after eating. I explained how it is pretty difficult for me to remain upright for this long after eating. Being upright is always difficult for someone with POTS, but especially so after eating. Eating sends a bunch of blood to the stomach for digestion, causing an increase in POTS symptoms. The only way to really relieve the symptoms (other than of course small meals), is to lay flat to help the blood circulate. She suggested a recliner. I could do that, or at the very least, prop up my upper body with pillows. I definitely will need to plan my day around when I eat so I can be sure I’ll be able to be upright for that long after eating.
All in all, good news! There’s nothing majorly wrong with me. She took a couple of biopsies. I’ll get those results in a few weeks. Oh, and the best news? She said I could take Propanolol as she doubt it had anything to do with my developing all these problems. Yay!
Update: Jake’s Mom just said we can have a recliner she’s had in her basement. 
Thanks Lori!
I always think it’s a good day when a medical problem can be improved with life-style changes, which I happen to know you (and most POTSies) rock at. Glad it’s nothing major. Looking forward to the stomach acid rant, as well as the diet drink rant. I’m a big fan of health and food related ranting in general. Take care.
Yes! That’s all I needed, there will be a rant coming to a blog near you soon.
Couldn’t agree more about the evils of diet drinks!
THe first time I went out for the evening about 6 weeks ago I suddenly realised there was nothing I could drink, as I couldn’t have sugar or alcohol. I ended up with diet coke. I felt dirty and soiled. But I don’t think 1 diet coke every few months will do much harm, but the idea that people drink them every day horrifies me!
Anyway. Very, VERY glad you haven’t got anything sinister going on with your GI tract. I had stomach issues when I was bedbound a bit, and I found just trying to keep myself as propped up as possible helped. Now I lay on the sofa with my legs up, but with my torso more or less upright and the stomach stuff has cleared up.
It sounds like I’ll be like you and my stomach will feel a lot better if I’m propped up when laying down. I agree that one diet soda every once in awhile won’t kill you. It’s just people that drink them every day, all day long that I worry about!
There is an organic alternative to Gatorade, it’s named Ultima . My neurologist has me drinking it as half my water. It’s a powder I mix with water. I even like it! Also, and this helps me a lot, I take green power tablets that are an alkalizing superfood. This might help with stomach acid…..I also use Triphala tablets, which really help with digestion, and a probiotic. I spend about $120.a month on supplements, but it beats drugs, and they really work. I am so glad you don’t have colon cancer! I remember feeling just like you, I had designed a really nice silk hat to knit to wear on my hairless head. I never did have to knit that hat, but it was better thinking about the hat than the reason for wearing it…..Go for the recliner, it helps me a lot. If I need to sleep during the day I choose the recliner, just make sure it doesn’t have any mold from being in the basement, the mold could make you feel worse. While you are in the canary stage you need to look at everything that could have an adverse effect and assume it will.
Thanks for all of the tips! Does Ultima have sugar in it?
I checked out Ultima and it looks really good for electrolyte replacement, but it has almost no sodium which is what I’m after. I might still try it out in the summer in place of gatorade for my stepdaughter. Thanks for the tip!
Geesh girl, we’re two peas in a pod. My scopes a year ago showed EXACTLY the same as yours. Did they warn you to stay away from ibuprofen? It will flare up the esophogitis, gastritis and ulcer(s). And I swear by the Colostroplex I am taking from my Acupuncturist. I see him Thursday and would be happy to grab you some if you want to try the natural route. I have not had to take any Prilosec or Pepcid since
The only time my tummy seems to flare is when I take ibuprofen.
Hope you are feeling a little better after your scopes. I know it wore me out for a few days when I had it done.
Go-lyte-ly……when I did my prep I wanted to smack whoever came up with the name for that nasty stuff. How about you?!
Have a good night
I had movi-prep. Oh my goodness, it was so nasty!!! I think for now ill hold off on the Clostroplex, but will definitely switch to it once this is all under control. Ibuprofen was probably a major player in making my stomach so inflamed. I get low grade fevers a few times a week and used to take it, but now I use Tylenol. Ibuprofen + stress + pint of tomato juice each morning = disaster I’m still worn out today but have been trying to convince my brain otherwise. Did you ever do the poor mans tilt table test?
I’m glad they spotted what the problem is. I wonder if there’s a way of neutralising the acidity of the tomato juice by drinking it with something else …nothing but milk springs to mind,and the thought of milk and tomato juice is doing nothing for the nausea lol!
I am also looking foraward to your health-food rant and if it includes the horrors of aspertane all the better.
Take care
That does sound gross, plus I don’t consume dairy. They think the Prilosec on an empty stomach and eating with the tomato juice will help. Bananas are also good for neutralizing acidic food but I can’t eat those either!! I have so much to say about it, I could have an aspartame hate blog! 😊
I love my recliner! After being flat on my back after my lumbar puncture, I really noticed better digestion when I’m slightly elevated. I’ll bet the recliner will help!
Yay. You’re the second person who has said it helped. It’s such an easy solution!
Dear jackie, I get something called ‘silent-reflux’: you don’t realise that you get the reflux, but it has the same effect. I have now realised that the stomach pain, was caused by the silent-reflux. You seem very aware of dietary matters, so you will probably know the sorts of food that cause reflux. I Also take peptac (antacid liquid). My reflux had caused nodules on my vocal cords=croaky throat! All the best xx
I’ve never heard of silent reflux, I’ll check it out.
I see the results–sorry for comment on the procedure post. I’m catching up.
Don’t be sorry 😊 thanks for reading
I tried to, but my blood pressure machine REFUSES to take my blood pressure/heart rate when I am standing up. I’m not sure why. My average sitting baseline is 90/60 with a resting heart rate of 70-73. Yesterday at infusion my BP was 87/43 and my heart rate 93. I was sitting, but it was shortly after my walk from the main lobby down. All I know is something is screwy and not working right!
I see my Lyme specialist tomorrow and will be talking to him about things. Symptoms I initially got rid of with the IV antibiotics are coming back despite me still being on them. He is my key into Mayo. I’m sure he will make the needed phone call, so I am not worried about that part of it. I think only you understand the anxiety of asking for that “last hope” to get better. Fingers crossed!
As for the colostroplex, you give me the word and I will grab it. I go to acupuncture every Thursday.
That’s very strange. I hope your doctor appointment goes well. It’s super scary to be using your last card, but I don’t think you’ll regret it!
Thanks Jackie, your encouragement goes a long way! Doc will be making the call tomorrow to Mayo to try to get me in as a charity care case. He and I think the IV antibiotic I have been on for months is no longer working (hence some of my symptoms coming back). So for now (until I get into Mayo), he is switching me to a new IV antibiotic. I start it tomorrow so fingers crossed that I tolerate the new one as well as I did the Rocephin this past year.
Hope you are feeling a little better today!
Wow, you cope with a lot of symptoms for a person so young! Like you, I had digestive problems from a young age (even childhood). I take Omeprazole, which is the generic of Prilosec. I take it on an empty stomach before breakfast. I’ve had an acid stomach all my life, and now that I’m OLD (65), I’d have acid reflux every night if it weren’t for Omeprazole (and there’d be many foods I couldn’t eat, like tomato juice and pizza).
I feel like Prilosec (Omeprazole) is a wonder drug. My other wonder drug is Xanax (generic alprazolam) for anxiety. Doctors seem to think Xanax is addictive, and some are reluctant to prescribe it. I think many people who are under stress and have chronic illnesses also suffer from anxiety. Anxiety can make a person feel awful, but it often goes unremarked upon and untreated among all the more obvious, physical symptoms. Anxiety can also be a cause of digestive and other problems.
I think the concern about addiction to Xanax is overblown. Most docs say it’s only for short-term use or panic attacks. However, I’ve been taking it for many years, under a doctor’s regular supervision, and haven’t felt any urge to take more or higher doses. In fact, I often skip a dose or two if I’m feeling OK.
My opinion: Chronic anxiety can wax and wane, but it may well persist over a lifetime. Xanax doesn’t cure anxiety, it only reduces the symptoms. When a person continues to need Xanax because their anxiety continues, it doesn’t necessarily mean they’re addicted to the Xanax. It simply means they have chronic anxiety, which continues to need treatment.
Ditto on the anxiety. My docs won’tgove me anything but Ativan, which does nothing for me. I an going days w/o sleep and having a hard time eating due to the ANS symptoms. Not sure what’s gonna happen to me.
When I was at a time where I really needed help with anxiety issues, Ativan didn’t work for me either Lori. Have you tried a psychiatrist? I’ve found many of my doctors do not like Xanax (addictive potential), but the psychiatrist was okay with it. This was only after he tried longer acting drugs like Ativan and Klonopin (made me cry constantly). I actually like how it is short acting because it helps me get to sleep when I need it, but doesn’t leave me in a sleepy/zombie type state the next day. I will say, the ANS specialist was not a fan of Xanax so that is is something I try and remember. He understood the need for anxiety management meds and suggested Klonopin but I relayed to him how I cried when I couldn’t find my shoes. He agreed it was probably a bad fit for me.
I can’t believe some of these doctors don’t think coping with chronic illness day in and day out, never knowing how you’ll wake up feeling the next day is not something someone would need help managing! It puts many of us in such a state, that any little added stress (like no sleep or family issues) can just push us over the edge. Turning off your brain at night when you can’t stop wondering if you’ll be getting out of bed tomorrow or not.. it is really hard no matter how many relaxation techniques you have under your belt! This is what I explained to my doctor, and he listened thank goodness.
I wonder if you told your prescribing doctor you’ve run into others with ANS issues who didn’t benefit from Ativan but really benefited from Xanax if he’d give it a shot?
Luckily, once I got my bleeding ulcer all healed up, I was able to manage my latest stomach issue with lifestyle changes. No more daily tomato juice, ibuprofen, nighttime eating, or lying down after eating. Personally, I avoid Prilosec as much as possible because of some of the ramifications of decreasing the acidity of the stomach, but I know for so many, it is a life saver. My Mom is one of those people so I totally know what you mean about it being a wonder drug.
A lot of doctors are VERY opposed to Xanax. I’ve noticed this too. The idea it is addictive is a researched fact, but that doesn’t make it inherently bad! I’m sure if I was constantly calling for refills, my prescribing doctor may be concerned. As it is, one months prescription lasts me a couple of months or more! It got me through a really rough time and I don’t even want to think of how sick I would have gotten without it from lack of sleep. Sometimes doctors need to step back and look at the patient. I am 23, had to quit my job, spend almost all of my days lying down, am in frequent pain, all making managing day to day life difficult…. is Xanax REALLY the first issue we need to tackle here? Especially at the dose I took: .25mg
Doctors!!!! The pressure on Xanax may vary from state to state. Some states are threatening doctors who overprescribe drugs.
I think general practitioners are overly cautious about Xanax to protect themselves. But Jackie is right about psychiatrists. Probably people suffering from serious ongoing anxiety would be better off consulting a psychiatrist than running up against a stone wall with family doctors.
The traditional stereotype of a psychiatrist as someone who lies you down on a couch and puts you through psychoanalysis for months or years is misleading. Many, if not most, psychiatrists these days treat patients primarily by prescribing and monitoring proven prescription medications. Psychiatrists sometimes don’t accept health insurance; but if you’re just seeing one every few months for a few minutes to discuss your prescription, the cost is not prohibitive. The psychiatrist will probably want an initial visit of an hour or more to fully assess and understand your symptoms. But after that, probably only a brief visit every three months for the prescriptions. I pay my shrink $100 every three months.
Xanax is an old, tried and true drug that seems to have few interactions or side effects. It both calms your anxiety (within minutes) and also makes you sleepy, so it’s ideal to take at bedtime if you have trouble sleeping. Xanax wears off in 4 to 6 hours, so some people may need to take it several times in a 24-hour period. Very small doses are amazingly effective. Many docs start with .25mg, and often patients cut that little pill in half! .25mg and .5mg are low doses, and they often do wonders for people with garden-variety anxiety. Much higher doses are sometimes prescribed for people with serious panic attacks.
Anxiety and its sidekick, depression, can have a terrible impact on a person’s life, but they are often overlooked by doctors who focus on physical symptoms. Often the anxiety or depression might be causing the physical symptoms.
Sometimes psychiatrists will prescribe two or three drugs together for persistent anxiety and depression. For instance, Prozac and Xanax, and others. Prozac and Xanax are both available in generics, $4 for a month’s supply. These drugs are so effective, safe, and cheap, it’s a crime when doctors are reluctant to prescribe them. Prozac works wonders for some people, not so much for others. But I’ve never heard of anyone with common anxiety who wasn’t helped by low doses of Xanax. You may want to avoid driving when you first start Xanax, until you know how long it takes for the sleepiness to wear off. If you take Xanax over a long period, the sleepiness action will gradually decrease, but the anxiety-reducing effect will continue.
I’d put off going to a psychiatrist for a LONG time because I didn’t have chronic anxiety/depression issues and I’d always had GPs happy to treat. I finally decided, why wouldn’t I go to someone whose sole focus, day in and day out, is prescribing these specific classes of drugs? He didn’t try and “talk about my problems” or anything like that. He just made sure I wasn’t in a state of crisis or something like that. He understood my anxiety is reactive to my situation, not chronic. Phew! Lucky me.