Chronic Gallbladder Diease - Help

[DSM3KIDZ]

My G.I. Doctor just called and told me I needed my gallbladder out. I know surgery is unsafe for us, what should I do?

Dayna

[corina]

Dayna,

I'm really sorry for you, but I do think that if the doctor says it has to be taken out, you better let them do that! I hope your doctor knows about POTS and how to deal with surgery! Emily got her GB out some time ago, maybe you can ask her for help (that is, if she's up to typing, not sure about that).

Best wishes,

Corina

[MomtoGiuliana]

Many patients on this site have had gallbladder surgery. If your doctor recommends the surgery it probably is better out--but perhaps you could get a second opinion, if you are in doubt?

Surgery is not dangerous for POTS patients, per se. I had a c-section with POTS. I have also had a biopsy. Both caused my symptoms to flare for some time. My POTS specialist says that this is common for POTS patients to have a harder time than the average person recovering from surgery--only b/c it generally causes POTS to flare.

Are you seeing a specialist for POTS? Can that person consult with your GB doctor and surgeon regarding optimum care for you?

Take care and let us know how you are doing.

Katherine

[KathyP]

Hi Dayna;

I know several people that had gallbladder surgery this year. I, myself, haven't had gallbladder problems. I have had surgeries with having dysautonomia and did fine. These days there are less invasive technics that they are using. I've heard that the most common is laproscopically (sorry if misspelled!), through little incisions. Everyone I know, who has had their gallbladder taken out was back to work within a week.

I also agree with Corina and Katherine. If your doctor says you need it out have it taken out. I wouldn't doubt it if you felt better after having it done. Good Luck and keep us informed. Take care!

KathyP

[tracy]

Danya,

I had my gallbladder out about 2 1/2 years ago. At the time I did have POTS, but just wasn't diagnosed yet. Hense for me, the only problem was right after surgery, I had to be put back on oxygen in recovery because I wasn't coming around. I didn't seem to be to bad after that.

Just curious, why do you have to have it out, is it because of gall stones, ( that was why I had to have mine out)? Just wondering. If you feel more comfortable, get a second opionion, or get with your POTS to see if they can work together.As others have suggested.

Good luck.

Also, do you know if they will be using the laprostic(?) or will they have to do it the old fashin way?

Tracy

[Roselover]

Dayna,

I had surgery last November and actually did really well. I printed out info for the surgeon and for the anethesiologist about POTS and the great need for extra fluids and suggested an artial line to track BP during the surgery. They followed both suggestions and I actually felt really good from the rest and fluids.

I had my gallbladder out 12 years ago. Very small incisions and easy recovery - though I didn't have POTS then. But last November I was fully POTSy and had a full hsyterectomy so I hope this encourages you in case you need this surgery.

~Roselover

PS: Lots of good articles to print on the PotsPlace website (DINET). Thats where I got mine.

[MightyMouse]

Emily (Dancinglight) may have a very strong opinion otherwise, but having my gallbladder out was just about one of the best things I've ever done. I had 6 or 7 years of attacks before I got it out...I think I was 29? I was back to work in 8 days, and probably could have gone back on day 5. That was more than a decade ago, during one of the first years that the laparoscopic procedure was available--they've gotten WAY better at it since then.

these days, it's an pretty easy one day surgery, and is does not pose any extra risk to POTS patients than any other short procedure surgeries. Keep in mind, Emily had been quite sick for quite some time prior ot her surgery, which has seriously complicated her recovery.

If you've got stones in your gallbladder, it's not going to get better unless they take it out. They don't have a better medical option yet. Sorry. I hope you do great and are up and around quickly. If you're having gallbladder attacks, I'm betting it will be a great relief not to have that pain. The post surgical pain doesn't even come close to what the pain of a gb attack, in my opinion.

Nina

[goldicedance]

I had my gall bladder surgery October 2004. My doctor who treats my POTS made sure that the anesthesiologist and surgeon were well briefed on my condition. Hydration both before and after is really important. I also had my appendix taken out at the same time since my doctor wanted to help avoid an additional surgery in the future. I recovered from the surgery ok but later had extensive diahhrea and a very difficult and contagious infection - c. difficile. I had to be hospitalized two different times after the initial gall bladder surgery for IV therapy, etc. If you want to call me to discuss in more detail, give me a call. BTW, what test did the doctor base his decision on? I was in the hospital 10 days before they diagnosed a bad gall bladder so I was pretty run down at the time of surgery! Good luck!

Lois]

[melly4]

Hi. I'm sorry you're facing surgery. I had a lap chole back in 2002, and it was the best thing I ever did, also. After being misdiagnosed twice with anxiety-induced reflux issues, I knew the pain was way too intense and that it was probably gallbladder, even though I didn't "fit the profile" for gallbladder disease. I fired my GP and it was diagnosed through another doc and removed immediately. The surgeon told my husband I was lucky I didn't wait any longer. I don't mean to scare you, but the wife of my brother's best friend was afraid to have her gallbladder surgery, and kept putting it off. Her gallbladder ruptured and she spent 6 months in the hospital having reconstructive surgery of her digestive organs damaged by the bile and received numerous blood transfusions. She is fortunate to be alive. Don't ignore the symptoms or your doctor's advice, but by all means, if you feel uneasy about the diagnosis, get a second opinion. I know facing any surgery is scary, especially the anesthesia part, and I debated up until the day of the surgery whether I would go through with it or not!! I did really well, and I'm grateful that I went ahead with it. i don't know how bad your symptoms are or how often you experience them, but I wouldn't wish the pain and daily vomiting that I experienced on anyone!! They will load you up with fluids before surgery, and I know you will do just fine. I was back on my feet in a couple of days. Please take care of yourself, and let us know what you decide so that we can be thinking of you when (and if) you have the surgery.

Melly

[DSM3KIDZ]

Well thanks for all your imput. I have 0 pain. My only complaint is the nausea. Is that weird that there is no pain? I know it's good but I'm hoping taking the gallbladder will help with my debilitating nausea. I had the HIDA scan. The normal ultrsound on the gallbladder came back normal. I guess the functioning of my gallbaldder is fine it's just there is chronic inflammation???

Dayna

[steph37822]

oops

[Guest Julia59]

Dayna,

I tend to agree with Steph,

Maybe it's worth a shot to get another opinion-------

You don't have stones, and the hyda scan showed that it functioned.

I know you mentioned inflamation, but I would still seek another opinion to see if it may be something else. Even though they have come up with better techniques to remove the GB-----it is still surgery and needs general anesthesia.

If it turns out that you end up having no choice to have surgery---you will be fine. Just make sure the surgeon and anesthesiologist is aware of your POTS----and that they take the proper precautions.

My hyda scan showed my gall bladder works 60% as of Jan. 2001. I know it's not working that well, but I eat a very low fat diet, and so far my flair ups are fairly mild, and I rarely get nauseated. I just get miserable and gassy---and very very bloated----but I also have slow bowel motility, so it is often hard to tell.

Only recently I have noticed a slightly sour stomach/mild nausea---but the pressue on the upper spine and brain stem has increased---and that will cause digestive problems as well.

I'm fighting to NOT have surgery---so the diet remains low fat. However, my diet now requires some good fats---like olive oil--ect. and when I eat the healthy fats I notice I get the flare ups---they are still tolerable though..........

I hope you feel better soon.

Julie :0)

[Guest Finrussak]

I agree with the others about a 2nd and even 3rd opinion...I get chronic pancreatitis and inflammation to the GB...and my GI guy says until absolutely necessary ( frequent GB pain, decreased function and/or stones) he wont remove any organ to "see if it helps"....

If you ever DO go for surgery just make sure the anesthesiologist is fully informed about dysautonomia...even more important than the surgeon--while "under" theyre in control and its no problem, coming out is another story...our bodies are trying to regain control and we all know how welll our bodies are controlling things to begin with

Like other docs anesthesiologists have "favorite" drugs and theyre not all POTS friendly...you have to be really firm about talking with all on the anesthesia team at least 3 days before surgery and have them WRITE down what you tell them, in the chart!!.

You may even want to look up whats contraindicated ( I think Dr Grubb has an article) as one of the drug combos used on me before I knew better (propofol plus fentanyl) made EVERYthing worse for over 2 weeks!!!!

And you may have to remind recovery nurses as well...you may not react "by the book"...

take a buddy ( friend or relative) who can keep track of all meds and your reactions once youre in recovery and who can speak up for you!!

Hope you dont have to have any surgery!!!

[OCsunshine]

I agree with everything that's been said so far. If you are doubtful and don't feel sure that the gall bladder is really the problem, get a 2nd opinion. Talk to a doctor that you feel comfortable with- a doctor familiar with OI/POTS. We have such a complex illness...

I have had bowel problems and all kinds of weird belly symptoms since my diagnosis in '94. Somewhere along the way my doctor found polyps on my gall bladder. Even then he voted not to take it out b/c he just thought it wasn't necessary, yet. Then I started having major attacks (oh, unbearable!) a couple of years ago and of course then it HAD to come out. Much better now!

If you DO get your gall bladder out, no worries. I just have 4 small incisions (and 1 large one for my appendix), and the small ones didn't hurt at all. I went off the pain meds b/c they made me feel sicker, and I did much better without the pain meds.

Let us know what you decide to do. Surgery is never the first answer... be sure to calm your mind by talking to other doctors and making sure this is really what is right for your body.

[DancingLight]

Dayna,

You got some really good replies so far. I figured I outta chime in since both Corina and Nina mentioned my experience. I think you joined the board shortly after my surgery?

I think the biggest question is WHY does your GI doc think you need your GB removed? And to make sure it is the best decision and a worthwhile risk to have the surgery.

Now, poor Nina feels guilty that she told me the GB surgery would go okay for me and I'd do find. I didn't. But Nina, is very, very right, I was very sick before hand and am still very sick. I am a very unusual case--even to my POTS doc. My recovery has been horrendous and I am having the worst year of my seven years of illness.

STILL, despite how hard this has been for me, there was NOT a choice for me in terms of getting my GB out. My GB was very inflamed (making it difficult to even remove laproscopically, but thank goodness they were able to or who knows how I'd be), with scarring on the artery and bile duct. It was also not functioning according to the HIDA scan with CCK.

I was having HORRENDOUS nighttime attacks like Rachel mentioned--unbelievable wretching, pain and diarrhea. I also had gotten to the point where I could not eat hardly any foods. By the time surgery came around, I was very ill b/c it had gone undetected for so long.

So, I do not regret the surgery in that regard as I am amazingly better on the GI front. And can enjoy many foods again and also have just so many fewer GI symptoms. I feel that my GB was making me sick in many ways also and had to GO. I was the 'green girl' on this board for many months!

Surgery is a last resort, but it was necessary in my case. You just want to make sure it's necessary, b/c it will take extra recovery with the POTS--even if you do not have the sorts of problems I did.

I know this is long, but my year has been defined by this incident. I did everything possible to prepare for the surgery--consults with surgeon, anasthesiologist, had my POTS doc speak with the surgeon ahead of time, got extra fluids before and during surgery, was monitored extra carefully, had the first surgery of the morning so I would be less dehydrated, was positioned during surgery to try to avoid aggravation of my cervical stenosis, etc.

In the end our best guess is the the anasthesia screwed with me and also that the intubation set off a major reaction with my cervical stenosis. I am such an extreme case and I always want to qualify my answers with that...b/c I know even my POTS doc is sort of blown away by my intense reaction to surgery.

I also didn't have very good care in the hospital afterwards--with cathing, monitoring, etc. which may have made things worse.

Also, I would make sure they check your electrolytes after surgery before they release you! They didn't do this with me and my Potassiumm was off and I ended up back in the ER by ambulance b/c I went unconcious. You may need to stay an extra day or two than is usual for surgery. I begged my surgeon to let me go home which was a bad idea...and then when he saw me back in the ER he said, you're not going home for a few days! Ugh!

Make sure your surgeon and anasthesiologist are aware of POTS and taking extra precautions. But first, make sure you really need your GB out.

You may or may not want to read my posts from surgery--there are tons from the months before describing my preparation for surgery, search for answers, symptoms etc. and then there are a LOT of posts about what happened afterwards. I truly believe it is unlikely you will react as severely as I did...and I hestitate to even tell my story. If I had known how bad it was going to be I it would have been hard to get me into the operating room, but I HAD to do it.

So, that's my scoop. Melissa/Sunfish also had her GB out at about the same time and had a REALLY hard time too. So, there's no way to know. I tried to just let go and let what was going to be, be. Because I had prepared the best I could and I had made the best decision for ME.

Whew, this is long. I sure hope it helps.

Let us know what you decide.

Emily

[Sunfish]

dayna -

first & foremost & will echo the question of WHY - specifically - your doctor says that your gallbladder needs to go. you say that your ultrasound was normal & that the functioning is okay too, which is what the HYDAscan tests, so i'm confused about where your doctor is coming from....perhaps you are too?!

like em (dancinglight) said, i had a super rough time after my gallbladder removal (early March). it didn't knock me for a loop for as long as it has em, but when i read all the responses about folks being up & about several days after i definitely cannot relate as i was still in the hospital at that point, barely aware of what was going on around me. the reason mine came out was b/c it was functioning in the single digits (6%) & was as a result was very unhappy (no stones but increasing sludge & swelling b/c it couldn't empty itself anymore). i had pain & horrible nausea/vomiting that meds were hardly touching. my nausea/vomiting were worse than the pain/cramping but all were definitely present.

that said, we THINK we know why my time was so rough. first, i was quite ill going into the surgery; i hadn't been able to keep hardly anything down for months, had been hospitalized twice (for a week each time) already, had been losing weight rapidly, & was overall quite a mess. second, i had majorly bad reactions to the pain meds they gave me, even in small doses. third, and perhaps most importantly, we found out recently that i have a cortisol deficiency, specifically that my body does not make the extra cortisol needed at times of physical stress. surgery is definitely a big one there, so i definitely should have been on IV steroids before/during/after, but we didn't know. and b/c of the autonomic issues i already had no one looked too hard for something else.

so, i was not the normal run-of-the-mill surgery patient....even in dysautonomia land. and i am still glad i did it as it almost entirely removed the rotten pain/cramping. b/c of gastroparesis i still had a lot of nausea & vomiting after but it was a bit improved & i was at least able to tolerate small amounts of "real food" and boost/ensure whereas before surgery i couldn't tolerate anything with even a smidge of fat & thus was pretty much living off of boost breezes & gatorade (& not very well i might add.)

like others have said, if surgery is the route you need to go it's not always so bad & can bring great relief. i had spine surgery a few years ago and while my autonomic issues were not nearly as bad then as they have been this past year, i was still on regular meds, etc. & i did quite well. i was VERY proactive beforehand (neurosurgeon spoke with dr. grubb, i met with anesthesiologist a week ahead of time who - amazingly - knew about dysautonomia as he had worked with dr. goldstein at NIH, etc) and i was more closely monitored during/after , but all in all things went well. MUCH better than the gallbladder removal, although i was almost (but not quite, probably b/c i was so incapacitated) as proactive this go-around.

i have had various other minor outpatient testing/surgery over the years and while i'm generally a bit slow to come around after, in general i've done well up until my past year, which again can likely be explained by the not-yet-discovered cortisol deficiency.

good luck with your decision....just make sure you understand the WHY so you are able to make an informed one.

and of course keep us posted!

melissa

[DSM3KIDZ]

Guys, I'm still debating on this. My ejection time was 15% in 30 min. does anyone know what the normal time is? The doctor said that was abnormal and that I have chronic inflammation and that means I'm having acute attacks. And surgery should help.

Another doctor said don't take it out that I might have cyclical vomiting syndrome (I don't have vomiting just severe nausea that meds don't touch.).

I wish taking the gallbladder out would be the answer, that it would help with the nausea. But I'm terribly afraid because I've heard of stories where people get worse instead of better and start vomiting and stuff.

I can't handle worse. My depression already gets bad enough with my current situation.

Maybe I'll try the meds for CVS and give it a month or two and if that doesn't work have GB surgery.

My nausea comes and goes. It's here for a few weeks and gone for a week or two. Is this consistent with anyone who has gallbladder problems, do the symptoms come and go?

Any imput would help since I'm STILL here debating.

Dayna

[morgan617]

Dayna, you really need to go with the doctor. The hida only shows if you have an obstruction, not whether there is anything else going on. The ultra sound may show minimal stuff, but that's all you need to have lots of problems.

My hubs had one bout of pain, he had surgery two days later and the doctor said it was ready to burst, although this did not show up on the u/s and he was no longer having pain. I really hate horror stories and I know sometimes there's another reason, but anymore, doctors are under a great deal of scrutiny with surgeries and there aren't many that will operate with no cause.

I'd give anything to convince my doctor to take mine out. It's filled with sludge, multiple stones, thickened and drives me crazy. The ejection fraction is less than 10 percent. But they won't take it out till my liver enzymes go up. So you can be on both ends of the spectrum. I'd err on the side of taking it out if it was me, however it is not. What you could do is ask the doctor why he thinks it's your gallbladder when the tests are so normal?????? There has to be a legit reason. If he's saying because he doesn't what else to do, there's always a second opinion....morgan

[morgan617]

Dayna, normal ejection fraction is 50% or above. morgan

[steph37822]

oops

[Sunfish]

hi dayna -

the first thing that came to my mind was the cost/benefit thing too...what makes it tough is that there's no way to know for sure on either side of things.

in terms of technicalities, "normal" gallbladder ejection fraction is considered to be 35-75%, though i think some consider 30% okay.

while i don't have CVS, i have pretty similar symptoms at times from gastroparesis/dysmotility (so who knows...maybe i do have it...)

i went into my GB surgery hoping it would help things but knowing it might not. it definitely helped, just not to the degree we would have liked. i already rambled about that in my earlier post.

i wish i could help more but it's a tough one. the fact that your symptoms come and go though is different than it was for me. i was a mess 24/7 before my surgery which made my decision easier...sort of a "it can't get much worse" scenario. i had times of worse pain, but the nausea was constant. and if i had more than a few sips of liquid or bites of food at once so was the vomiting.

if it were me and we really thought that CVS was an option i would probably give treatment for that some try first. i had been treating my gastroparesis pretty aggressively medication-wise with little relief so that was part of my surgery decision making process.

hang in ther & good luck with the decision...

melissa