Down & Out About my GI Tract

[Christine]

I know that in the scheme of all the things that could be *bad* in life, this is fairly minor, but I'm so depressed over this, I thought it might help to write.

This past Wednesday, I had a colonoscopy and upper endoscopy (EGD) done. I posted an in-depth, play-by-play of it on the Community Board on Thursday if you want to read the gory details of it (ice storm, cancellation, too many drugs, etc). Anyway, to be brief here, I was having this done because back in July it was incidentally found that I have anemia. Many of my doctors just shrugged it off and didn't even want to determine what type of anemia I had. I'm not one to settle, so I pushed and found out it was iron deficiency. Again, the doctors just wanted to assume it was my periods (even though I don't think they are heavy at all). In fact, my GYN was ready to rush me into doing an endometrial ablation! But I continued to push my GP about it and he recommended a colonoscopy to rule out GI bleeding. If that was okay, then we would more forcefully pursue the GYN area.

Now, my history is that back in 1998, I was diagnosed with acid reflux (GERD). I have been on and off Prilosec since that time. More recently (say in the past 3 years), I have been FAITHFUL to taking my Prilosec every day because my stomach just doesn't feel right. I NEVER get heartburn. Just burning, queasiness, upset stomach. One day, I'll be fine, one day I won't.

So, when I went back to my original GI doc for the colonoscopy consult, I told him that I thought it would be prudent to take another look at my stomach. I had been on Prilosec for 8 years--let's make sure it is working, you know? He agreed.

The final result was that basically my colon was fine. There was one small, benign-type polyp. My stomach was the issue. It seems that I have bleeding in my stomach (I have two pictures of it in two different areas), gastritis (hence the all-over stomach bleeding), and a hyperplastic polyp most likely caused by PPI use or the gastritis.

There is no way to tell how long I've had this, if it is even the cause of my anemia, WHY I have it, etc. My GI doc said that he *would* have attributed it to NSAIDs use. I had been using Motrin quite regularly up until Dec 2006 when I developed an allergy to it. He thinks that if the bleeding was due to NSAIDs use, it would not have been there 7 weeks later--that I should have started to heal. My mom, who was with me at the time, said he just looked a little surprised and perplexed by the whole thing.

Everything I've read on the internet points to H. Pylori as being a big culprit in this, but the doc said nothing to me about this. I'm sure he took biopsies though (which I will get back this coming Monday).

I'm just starting to get so scared and down about it.

Now I have to start taking liquid Carafate 4 times a day. Of course, this medication interferes with EVERYTHING even though it heals the stomach. So now I get to worry about how it's going to affect my Synthroid medication and thyroid levels. Plus it makes me a little bit queasy.

I just feel so burdened down with health issues these days that I've gone into some kind of depression. I told my mom that it's kind of the "chicken and egg" thing. I feel bad because of the iron deficiency, and then I can't do much, I then I feel bad because I can't do much. I am a 43 year old woman with 2 kids and a full-time job and I feel like an invalid these days. Many of my friends are the same age as me with the same responsibilities as me and they are running circles around me. I feel so bad for my kids because, some days, I just can't do stuff with them. It is starting get to me.

I know this sounds petulant and it could be so much worse, but I feel like I've been dealt ENOUGH. After thyroid cancer and four very scary breast surgeries (not cancer thankfully), I just want to be left alone. Now, I'm worried about my stomach and terrified that he's going to tell me that it's cancerous (even though he didn't seem the least bit concerned with that).

So, how do I cope with all of this?

 

[Mackey Mouse]

Morning Christine, I just sent you a pm.

I just read your post and thought where can I help her, what words of advice can I say that will make her feel better this morning...

First, let me say this, good for you for pushing these doctors to get answers. You cannot just say to someone you have anemia and not find out why. Now that you know that you have some bleeding in the stomach, the next step is to find out why. I have just switched over to Prilosec myself as my precious insurance company will no longer cover Nexium.....how sweet of them. I will let you know if I notice any difference with this medication over the last one. I am going to ask my doctor to write a script for the generic of this as I am paying this out of pocket and I have to take 40mgs so it can get costly, what do we have insurance for??????? that is a whole other subject.

I think I would start by calling my endocrinologist, the person who monitors your synthroid medication....to check for anything conflicts in medication. Also, the carafate, if that is a prescription, you can ask the pharmacist if there is any conflict with the synthroid as well. Have you looked it up on the internet and done some reading.. I always do that so that at least I know what I am talking about when I am talking to these doctors...

I hear you on the "leave me alone" thought about all that has gone on in your life. It is not easy trying to get through to these doctors what is going on and then add in that everything seems like you are going in circles with no answers, but do know you are doing the right thing here by trying to get answers.....and you will eventually find out why you are feeling so lousy....Your thyroid levels are ok???? just those being off can be enough to send you into despair. Hugs...

Right now, you are at the worse part of this whole thing. The waiting for the answers part, we did that yesterday and the stress of waiting only intensifies what you are feeling physically and internally....please hang in there, and you will get the answers you need to make the right decisions on your health and get you on the road to recovery..

You are not petulant, you are tired and want answers to why you are not feeling well....We are here for you, please come and post and we will try to keep you bucked up during this whole thing. You are not alone. Hugs

 

[Christine]

I have just switched over to Prilosec myself as my precious insurance company will no longer cover Nexium.....how sweet of them. I will let you know if I notice any difference with this medication over the last one. I am going to ask my doctor to write a script for the generic of this as I am paying this out of pocket and I have to take 40mgs so it can get costly, what do we have insurance for??????? that is a whole other subject.

Marsha, I'll just give you my "two cents" on this as I have been through gamut of these drugs. It might help you down the road as you are switching medications.

First know, that Prilosec had about 7 patents on it (not 100% sure of the numbers). When 3 of those patents expired, it was enough to allow a form of Prilosec to be manufactured as a generic. The active ingredient, omeprazole, was released; however, the delivery mechanism of omeprazole is still under patent. This is why, if you buy Prilosec over the counter (Prilosec OTC) it is in tablet form and is not purple with spanules in it. If you get prescription omeprazole (the generic and not OTC), it *is* in a capsule; however, again the delivery or the types of spanules they use is different. My experience on both drugs was not great. The Prilosec OTC gave me horrible nausea after 3 days of use (probably whatever was in the tablet) and the generic prescription omeprazole seemed to work for my GERD but gave me such a horrible, dry mouth it was weird. Took me awhile to figure out it was the generic. Anyway, I know have my doc write me a script for BRAND NAME Prilosec 20 mg. Yep, they still make it. I have to pay the top tier of my copay for it, but it is worth it because it works and gives me no side effects. As for Nexium, it would be cheaper for me to take that; however, for some reason I get really "jittery" and "edgy" when I take it. Very strange, but I've tried it a number of times and always get the same effect.

I think I would start by calling my endocrinologist, the person who monitors your synthroid medication....to check for anything conflicts in medication. Also, the carafate, if that is a prescription, you can ask the pharmacist if there is any conflict with the synthroid as well. Have you looked it up on the internet and done some reading.. I always do that so that at least I know what I am talking about when I am talking to these doctors...

Already looked it up and it's right in the monograph. It is known to interact with Synthroid by blocking absorption. I can get around it by taking my Synthroid first thing in the morning (already do) and waiting 2 hours before taking Carafate. That's what I'm going to have to do, but because of this, I'm probably only going to be able to get in 3 doses of Carafate per day rather than 4.


Honestly, I really hope this turns out to be H. Pylori. I've got so many *odd* things that would all be beautifully explained by this being the cause. I've had elevated neutrophil counts for well over a year. Found out that H. Pylori will cause this. It has bothered me but no doctor thinks it's a big deal. I had a CBC done in January that still had the elevated neutrophils plus my WBC was mildly elevated. It all points to some type of bacterial infection/inflammation yet I didn't have one that I knew of. If it turns out to be H. Pylori, it would all be explained. Probably would be the cause of my weird skin rash too that has been going on for the same amount of time.

 

[Mackey Mouse]

Thanks for the info on Prilosec......see how we can help each other. Now when I go to the doctor, waiting till March to see this GP, but that is another story, I will have information to make sure I can get the right PPI to work for me.. Nexium worked fine, but no, my insurance will not cover it so I would be paying a lot to continue this medication.

thanks again.. hugs

 

[mickeymedic]

Will your insurance cover Nexium if the "less expensive" alternatives don't work? I'm on a fairly "cheap" insurance, so I, too was denied Nexium. Luckily for me, the generic Omeprazole works just fine. But, as I was researching what my insurance would and would not pay for , I discovered that they WILL pay for the more expensive brand-name meds if the alternatives don't work.

 

[Mackey Mouse]

Right now I am taking the OTC prilosec and enjoying heartburn....so that is not working... I have taken the generic omenprazole before and it did work fine, but then the insurance co stopped covering it and only covered Nexium, I switched to Nexium.. now they are not covering that cover the generic,

The games they play with people's health.. it is all about the almighty dollar...

 

[arminnie]

Let me hop into this discussion too. I've had GERD for about 10-12 years now.

Originally I had no clue - didn't even have heartburn - but my pulmonary doctor had me do the tests because my asthma wouldn't clear up.

I took prilosec for a few years - then had to up it to twice a day. It got bad again so I had surgery - TWICE.

Guess what - I've been back on medication for the past 4-5 years. I take Acifex (also top tier) - sometimes twice a day. My Acifex used to cost $7 for a 90 day supply, but the insurance upped the co-pay to $70. That was a 10 fold increase.

I've also taken Reglan which is cheap and works great - but you are not supposed to take it for long periods of time. My doctor said it could cause horrible spasms like Michael J. Fox has and that it is not reversible - scared me.

I've had a very, very tough past 6-7 months. My lungs may be permanently damaged now. I coughed up blood this past summer, and I have spots that show up in a CAT scan.

So my advice to you is to do whatever it takes to get the reflux under control. It can cause major damage to the lungs and esophagus.

I've just been through a 2 week ordeal of bronchitis - caused by CHOCOLATE CHIP COOKIES!!!!! I ate them right before going to bed. Woke up with awful reflux - choked for an hour as it got all in my lungs. Then I developed the bronchitis. Bet you not many people can claim to get bronchitis from cookies.

I never had this reflux in the middle of the night until about a year ago. I've learned (the hard way) not to eat before going to bed - especially chocolate and nuts.

 

[Christine]

arminnie,

Thanks for your post. I do remember you telling me before how bad your reflux was.

I have been lucky, I guess. My actual "reflux" is not that bad. In fact, during the endoscopy last week, my esophagus look "great". Obviously, my stomach is churning and burning but it's not refluxing up. Or, if it is, it's not damaging the esophagus. Very strange. I know without my PPIs, my stomach will burn like crazy; however, I just never get any heartburn or burning. I wish I knew what was wrong with my stomach. Probably won't get any answers for a long time.

My biopsies did come back and all was well. No cancerous cells, no H. Pylori. Just gastritis of unknown cause.

 

[rie'smom]

Christine, I'm going to an appointment at a holistic health center next Monday. I'm going to try acupuncture for my stomach problems. I'm on thyroid meds too(Armour 3 grains)so I hate to add another one. I'll post and let you know how it goes.

 

[Mackey Mouse]

Just a quick remark about acupuncture........Tom was doing great but then she decided she was going to speak to him about diet and try to put him on this special diet with all the things he cannot eat like beans, nuts etc....and take away all dairy, coffee, white sugar etc.. Now I am not saying that we should not be eating like that, I am just saying I know my husband will not eat like that. I am not taking a few of his pleasures away from him like his morning coffee, and maybe sometimes a few jellybeans. So he told her that he would not do the diet and that he would prefer to just come for acupuncture......to the tune of $75 a week. She said what if I speak to your wife....and she cooks this for you, would you do it then... Tom said you can speak to my wife, but I am not going to do it... I do not drink, I do not smoke, I have a few pleasures that involve food and I am not giving them up..

So she approaches me, but decides to take a different tact with me. She tells me that Tom will do this if I cook it for him and don't I want my husband to get better.....I just looked at her and thought who do you think you are kidding. I did not say anything then, but I know my husband and one thing she should have known is you never try to guilt a committed partner into anything.... When Tom and I compared notes, he was so annoyed and refused to go back to her. So no more acupuncture for him until I find someone else..

What I am saying here is be careful, when it becomes about the healing there are some out there who want to push their drinks, herbs, food etc....make sure you are in tune to that and you are strong to resist as they will have you spending a lot of money not just on the treatment but on the various tools to assist the treatment..

oops this was not a quick remark, but I do not want anyone else to be treated like this..

 

[Christine]

Thanks for the comments. Rie's mom, do let me know how th acupuncturist goes. Although, I kind of doubt that I would be able to even find one around here.

The D.C. area is very "conservative" when it comes to holistic medicine and caretakers in this field are few and far between, especially out in the 'burbs where I am. Lord knows how far I'd have to drive to get to one.

I also agree about watching out for the "products" many of these people push. This was a big deal when I was searching for a chiropractor. Took me awhile to find one that wasn't "new age." I found one who went to a school out in Oregon and their philosophy is to not treat the patient with ANYTHING that isn't backed up by science.

 

[rie'smom]

Thanks Martha for the heads up. There's no way I'm buying anything like that. If they try to push anything,I'm outta there.