An Update On All The "Joy" In My Life!

[Razzyirt]

Hi All;

I find myself coming back to this forum once again...although, I am not sure if I do in fact fit into any column of Crohn's or colitis. Maybe it is IBS, I am not sure. Whatever it is, it really does suck!

As a side note...when my doctor told me that it was "only IBS, nothing more" I kinda wondered what the big deal was. IBS, IBD, whatever it is...it's majorly impacting my life...so can we at least come up with a plan to do SOMETHING about it???

Anyway, this little update actually has to do with the opposite end of the digestive system...as I have stated before, I suffer from ridiculous, unrelenting heartburn. I won't go into everything I have tried here...but believe me, I have tried everything! It can be so bad, that I can reflux everything right up into my mouth, on an empty stomach!

So...I was referred to a surgeon to discuss getting a fundoplication (the surgery where they wrap your stomach around your esophagus to help prevent the reflux). My GI doc basically told me I have no choice in the matter. It's the only option I have left.

So, I think I finally have an answer, a solution...so hope that it could at least get somewhat better...and I go see the surgeon...and, he isn't even sure I have GERD!!!

Turns out my GI doc is a bit of a moron...and he hasn't even run the appropriate tests to see if I'm a candidate for a fundo. And the surgeon thinks there may be something else entirely going on....because he said it sounds like I have a motility problem, or an underlying disease (like scleroderma or something????) rather than just straight GERD...and if it is a motility disease, then doing the fundo will just make things a million times worse.

So...I'm left feeling bewildered and frustrated! I thought I was at least going to get one problem fixed...and now I'm left with more questions than answers.

So, I kind of feel like I'm getting to the end of my rope here....I have had progressively worsening reflux symptoms for the past 6 years, and it has gotten increasingly more painful and difficult to swallow (which I was assured was "just the GERD"). And now, it could be something else entirely????

All this time spent suffering. Getting to the point where I wake up at night choking, I found out that I've damaged my larynx and now have chronic laryngitis, and I hate food...grrr...

Well, that's my small rant. On a side note...I haven't had many more bouts of distress on the other end...just raging constipation that I can't see to get rid of no matter how hard I try (despite the fibre supplements and the 2L of water a day that the doctor assured me would fix the problem)...

*groan* Making me lose all faith in the medical system here....

 

[mickey]

Make sure you are not drinking carbonated beverages. That may further exacerbate your reflux issues. I would highly suggest daily ginger tea, which should help calm your stomach. I had this problem 20+ years ago, after being hospitalized for 2 esophogeal ulcers. Was a month before I could eat any solid foods. Eliminate sugars from your diet (no health benefit and certainly will help progress any disease).

For consitpation: google "bikram yoga wind removing pose" and do it twice a day (morning/night). You only do this stretch twice each time, but works like a charm. Also begin doing daily belly rubs to keep blood circulating in your belly area. It will help the body heal itself. Use flat palm and begin on right side of navel, go up above navel and down around the left and back down around to the right side. You are basically massaging your ascending and descending colon. Helps "move" things along. Do for as long as you can tolerate and as often as possible. Good luck!

 

[Cat-a-Tonic]

Raz, I'm so sorry to hear that things are so bad. I have GERD, but it's not nearly as bad as what you describe. I'd be inclined to think there might be something else going on too, and I certainly wouldn't have that operation if there's a chance it'll only make things worse. I would also think that getting a second opinion from a new (and competent) GI would be the next step as it sounds like your current GI is just writing everything off as IBS & GERD. I don't know what else to say except I hope you can get this figured out and under control very soon! Hang in there!

 

[Razzyirt]

Hey!

Thanks for the support, that's why I love this forum (even if I don't technically have IBD!) As for carbonated beverages and such, no worries, I don't touch any of the stuff....I eat a VERY restricted diet (no choice in the matter actually) as, along with the GERD, I have interstitial cystitis (in a way, similar to IBD, just inflammation and ulcers in the bladder) and if it doesn't bother the GERD, it bothers the IC!

I have heard that both ginger and peppermint are good for the digestive system...except I can't have either, they make the reflux horrible and put me into a lot of pain.

Thankfully though, the surgeon is willing to run a number of tests (the first is March 6) to see if he can figure out what is going on. He's gonna look at gastroparesis and other motility issues....just sucks though, cuz it means more awful tests!

He wants to start with a gastric emptying exam, then do a manometry test and then another gastroscopy, but he wants me off all my meds at least 2 weeks before that. Which is going to be hell!!!! I take 80mg Nexium/day, 80mg domperidone/day and 800mg cimetidine/day (so, a ton of PPI, a motility agent and an H2 anagonist!) and I still reflux daily (and cough, and wheeze, and can't breathe, and loose my voice....).

Anyway, I'm just getting sick and tired of all of the medical crap (I am positive all of you can sympathize!) It's just nice to get all the frustration out there, because even though it's not IBD, it's a digestive disease and you all know how awful those are!

 

[Cat-a-Tonic]

I'm glad to hear you're having more testing, and I hope going off your meds and going through all the tests isn't too terribly miserable. I can certainly relate to getting frustrated and exhausted with doctors and tests and hospitals and still getting no answers. I hope this surgeon can get you a name for what's going on so that you can feel better! It sounds like things are still pretty rough in spite of being on so many meds so I hope you can get a better regimen and feel well again. (I'm on Nexium too, 40 mg daily and it makes me feel almost normal, so that's just awful that you're on 80 mg and still refluxing so badly!) Good luck and keep us posted on how the testing goes!