Question for KitKat or others ...

Hey misterie, (FYI, I'm going to give you WAY more info than you asked for...sorry in advance - I write like I talk!)
Yes, I had pain. I started having pain in the upper, middle part of my breastbone in August, 2008...right where I would consider my esophagus and stomach to connect. I was just coming out of an 8-month long flare and had lost 40lbs in the process. It was a burning/gnawing/aching pain that at first only lasted for about 30 minutes at a time so I just chalked it up to indigestion. I'd go days, sometimes a week or more before the pain came back.

The pain would come and go every few days to a week and for a couple of months the pain lasted only 30 minutes each time. I called my GI's office anyway to ask about the pain but in true fashion with my GI's nurse, I never heard back from her. But then I didn't have the pain again for another 2 weeks so I just decided I would wait until my appointment with my GI in December and mention it to him in person to see what he thought it might be...maybe the pain wouldn't even come back again...

But that was a stupid idea because the pain did come back and I ended up putting up with that pain until my appointment. I wish now I had NOT waited to get some answers. But I almost felt silly asking about a pain that was probably just stomach upset (although Tums wasn't helping any) but the pain started to come on more frequently and started lasting longer than 30 minutes so I knew SOMETHING wasn't right.

At my appointment with my GI in December, he asked a bunch of questions about the pain: "Does the pain start after you've eaten?" "Does the pain go away after you eat something?" "Does it hurt to swallow?" "Does the pain radiate to your back?" Stuff like that. My answers were all NO. This pain was so random. Food did not take the pain away. Sometimes the pain would start before I'd eaten anything. Sometimes it would start hours after I'd eaten. My GI's decision was for me to pop an extra Prilosec every day to see what that did. I left his office a bit annoyed as I knew this pain wasn't going to go away with another 20mg Prilosec.

By January, the pain had intensified 3-fold...every day for at least 3-5 hours. I didn't want to eat. I had no energy to eat. I lost more weight. I became massively fatigued and on top of that my Crohn's symptoms had kicked in again, probably from the stress of the pain. One day the pain didn't let up until after 8 hours...that's when I decided to self-diagnose! It felt like a stomach ulcer to me so I figured the H.Pylori bacteria I know is in my body was active again and had caused a peptic ulcer. So I asked for the bloodwork to test for active H.Pylori. It took 2 weeks to get the result back and it was negative. DRAT! So much for me being a doctor.

So I called my GI's office and told him the pain was worse so he scheduled me for an Upper Endoscopy and a Gall Bladder Ultrasound. I had the GB ultrasound first so when the results were gall stones, the Upper Endoscopy was cancelled due to the fact that NOW that my GI knew I had gall stones, he was sure that was what was causing my pain...which was the radiologist's opinion, too. The gall stones were tiny, too...about 20 of them that lined the wall of the bottom of my GB. I was given an Rx for Carafate so the pain would go away before I could get scheduled for surgery to remove my gall bladder.

My GI; my surgeon; my uncle who is a retired surgeon; my 2 cousins who are Nurse Practitioners and another cousin who has been an ultrasound technician for over 20 years are ALL of the mindset that if a gall bladder has gall stones or simply is not functioning, it MUST be removed. There is too much risk of infection to leave it in an otherwise healthy person, but particularly someone who has Crohn's Disease.

I was scheduled for outpatient laproscopic gall bladder removal surgery. There was NO prep (YAY!) other than for me not to eat after midnight the night before. When I got to my hosptial prep room, I stripped down and put on the fabulous hospital gown they provided for me. I also put on knee-high stockings (to help ward off blood clots) and socks to keep my feet warm. They then wrapped my calves in these great, motorized pumps that would blow up like a blood pressure cuff to help with the blood flow in my legs during surgery. Those things were awesome!

There were about 4-5 drugs involved in the entire surgical process from pain killers to anesthesia. I remember starting to feel woosy as they rolled me into the OR but I was still alert enough to look around the room and see who all was in there with me. I also had time to tell my surgical nurse I REALLY had to pee! She said I didn't need to worry about that but later they decided to tell me they were going to hook me up to a catheter and wanted to tell me that BEFORE they put me under so when I woke up, I wouldn't think anything had been done to me "down there". tongue

I scooted over onto the OR table and they put an oxygen mask over my face. I remember my anethetist telling me it was "just us girls" in the room at that time but the next thing I knew my anethesiologist was by my side. I asked if he was giving me the 8-minute drug now and I heard everyone giggle a bit and say "8-minutes?!" (I knew the 8-minute drug was getting ready to put me to sleep immediately but I knew it wears off after 8 minutes and then they give me the REAL anesthesia for the surgery itself). The next thing I knew, I was in the recovery room.

After they put me to sleep, the catheter was put in place and they also put a breathing tube down my throat. I knew about that beforehand, too, so I would know why my throat hurt a little after surgery. The bile duct was closed off with 2 titanium staples that are, supposedly, never going to move...or set off any metal detectors, either. smilewinkgrin

The recovery time at the hospital was crazy-good. Everything was blurry but those things massaging my legs were SO comfortable! I was SO relaxed. I could barely see a clock on the opposite side of the room so I was trying to calculate how long it'd been since I went in for surgery and it had only been about an hour. I was in and out of consciousness for almost 2 hours before they put me in a private room. After about 3 hours, although still feeling good from the drugs, I was getting frustrated that I couldn't WAKE UP good enough. The first time they helped me out of bed to go to the bathroom I got nauseated - but just dry heaved because I didn't have anything on my stomach. Then I giggled. Drugs are weird, aren't they? shocked

4 hours after the surgery, I was on my way home. I can barely remember getting there. Family was there to get me around. I knew there were 4, small incisions that had been made; I knew each had disolvable stitches covered by steri-strips that were then covered by gauze and a waterproof bandage. The right-side incision was the one that hurt the worst by the time nighttime came. I had a hard time getting comfortable that first night to sleep. I ended up laying on my left-side, where there was not an incision. I had an Rx for the pain killer, LORITAB. I took one of those in the middle of the night that first night. I took 2 of them the day after surgery but I also got out and went back to the hospital to get my gall stones from the lab...I just HAD to know what they looked like! So although the incisions were aching and one had a stabbing pain to it, I was still able to walk in the hospital the day after surgery and function.

I took only 3 pain pills in all. Within a few days, I felt good. I was back to work 3 days later. The incisions ached (like bad paper cuts) for a week or 2 but by the 3rd week, I didn't feel anything. I had to leave the bandages on for a week (I could shower with them on) and then all that was left was the steri-strips holding the dissolvable stitches together and it was ok to get those wet, too. The steri-strips fell off on their own within 3 weeks so then I could get a good look at the incisions. They were very tiny. I've had no problems from the surgery itself.

NOW, having said ALL that, the same pain I was having before the surgery came back 2 weeks to the day after my surgery. So the pain I've been having since August evidently was NOT related to the gall stones. I'm now scheduled for an Upper Endoscopy in 2 weeks. But either way, I'm glad things worked out the way they did because my gall bladder needed to come out. I'm thrilled to now know that any problems I have from now on can't be blamed on my gall bladder! wink

I will tell you, too, my surgeon's Nurse Practitioner said some people with gall bladder problems (like stones or a non-functioning GB) NEVER have any pain from it and only find out by accident from another test for another problem that there's also an issue with their gall bladder. I guess it just depends on the doctor as to what needs to be done about a gall bladder with gall stones. Like I said, the doctors and other medical personnel I know think a bad gall bladder needs to be removed no matter what...and these aren't all surgeons. Of course SURGEONS would think a bad GB needs to be taken out but not all MD's would think that. But the people I know have just seen enough gall bladder problems over the years that, if not removed, can cause other major problems down the road.

Are you thinking your GI wants you to get your GB removed? Even though the pain I was having came back, I still think it was a good decision to get my GB out. Now, you might feel differently about it. I'd say do your homework on the subject of gall bladders with gall stones and the risks associated with it. Never question yourself on a 2nd opinion, though. If you think you need one, get one - I would think from another GI but even an Internist would be a good choice for a 2nd opinion.

BTW...I notice in your signature line you, too, deal with swelling ankles. Me too - when my ankles start to swell, it's a sign I'm getting ready to go into a bad flare.

Gosh, I hate you're having this pain but I'm glad I'm not the only one! Yes...it's just a "sick" feeling to me, too. Sometimes the pain is there...sometimes it's not. It has woken me up before but usually it starts in the late morning; early afternoon or late afternoon and lasts anywhere from 1-3 hours (although I did have the 8-hour long pain one time and this past Saturday it lasted for 4 1/2 hours). I don't feel nauseous, like I need to vomit...I just feel like someone has a pumpkin carver and is just continuously scraping out the inside of my stomach. The pain often starts out very light and gets more sickening as the hours click on. Then, out of the blue, the pain will go away. But while I have the pain, it's almost disabling. I can't focus and I get fatigued...like my body is working SO hard to fight the pain, I get really tired.

One thing I found out through my research is that rapid weight loss can CAUSE gall stones to develop. I would have never thought that. So when I lost 40lbs last year, I can't help but wonder if that was the reason I ended up developing gall stones OR if I've had them for YEARS and just not known it. 30 of those pounds were lost in 2 months. It was a rough 2 months. No matter what your weight is now or has ever been, during your many years with this dreaded disease have you ever had any kind of rapid weight loss that might have contributed to you developing gall stones? Of course, WHY they are there doesn't really matter...it's the fact that you KNOW you have gall stones that's the most important thing for you to know and consider when making a decision about what to do about having your gall bladder removed.

Is your back pain located around the same area where your stomach area hurts (the mirror image of the pain)? That is A symptom of gall bladder problems. That's why my GI asked if my pain was radiating around to my back. Mine doesn't, though.

I was SO disappointed when they wouldn't let one of the nurses take my camera into the OR and take pictures during the actual surgery. I LOVE pictures of stuff - even if it's gross and even if I'm asleep! shocked They said something about it being a "sterile environment"...whatever. So I took pictures of ever OTHER step of my outpatient day so I'd have a scrapbook entitled "My Gall Bladder Removal Day in Pictures". My gall stones...hehe...they were nasty-looking but super-cool!!! Tiny little 'ol things, most of them stuck together. 20 of them in all. They were light tan in color and I guess a little bit smaller than BB's for a BB gun...judge for yourself:

Is it your NEW doctor, the one who figured out about your pancreas problems, who says you need to get your GB out?

Glad you've got insurance now...YAY! Get good use out of it. I'd start with the suggestion of having your gall bladder removed!

Ask most doctors and they'll tell you that you don't NEED your gall bladder. And once someone starts having problems with their gall bladder it is DEFINITELY useless and more harmful to them than good. From what I've read and heard from medical professionals, someone can have gall bladder problems (either stones or a non-functioning GB) for many, many years and NEVER know it or ever even experience any problems with it. But once the PROBLEMS start, it's best to get the thing out before it causes OTHER, more serious problems.

Like with mine, since I NOW know the pain I'm having isn't gall stone related, I might have gone for YEARS not even knowing I had gall stones if my GI hadn't ordered an ultrasound. But I sure am glad I got the ultrasound and found out the stones were there because of the problems they COULD and most likely WOULD have caused me at some point down the road.

Even after my gall bladder was removed, the surgical team did an X-ray of my chest/abdominal area to make SURE none of the gall stones had gotten out because if one gets out of the gall bladder and out into the abdominal cavity, even a little bitty one can wreak havoc. Oh, and I thought this was interesting...they actually go into the gall bladder and take the gall stones out FIRST and THEN go BACK IN and remove the gall bladder itself. Strange, huh? I would have thought they'd just take the gall bladder out with the stones in it all at once.

Truly if you have gall stones, it very well could be the cause of your pancreas problems. Even if you don't feel bad NOW, the risks of those stones getting loose at any moment or causing an infection are much greater than the risks of the surgery itself (this all, of course, is my opinion based on internet research and my own doctors and family members opinions). I do come from a medical family and am surrounded by medical opinions. Although removing my gall bladder did NOT stop the stomach pain I was and am still having, I do TRULY believe getting it out was a NECESSITY. If just one of those itty-bitty stones had gotten loose and made its way out of the bile duct, I could have started to have all sorts of problems (including pancreas, liver & kidney issues). Or even worse, if one or more of the gall stones BLOCK the duct, that'll cause problems, too.

I wish you LUCK and GOOD WISHES on your decision as to whether or not to get your 'ol GB taken out.
My Upper Endoscopy is scheduled on June 1st. I'll let you know what I find out. I sure hope my GI sees SOMETHING. If not, I'm a) going to start to feel like a paranoid hypochondriac and b) going to get a 2nd opinion

Zanne suffers with alot of gastritis. I am sure she will be along soon. You might do better making a separate post about gastritis. That for sure will get others attention. Good luck!