Gallbladder surgery

[kaitlynb]

Hello,

I am a 27 year old who recently had a few gallbladder attacks and found out that I have multiple gallbladder stones and a contracted gallbladder via ultrasound. Iwent to see a GI surgeon today. He was referred to me by my CF specialist. I was not very happy with the consultation and the bottom line was that surgeon was not comfortable with operating on me because I had Meconium Ileus when I was born and so 27 years later I have a lot of scar tissue. The surgeon really needed to consult with me CF specialist before we schedule any procedures. I was very frustrated when I left the office because I felt that I really did not get any answers and the surgeon did not know anything about CF.
I thought I would post on this forum and see if anyone has had a similar issue with gallbladder attacks and stones or if anyone else had Meconium Ileus? How are you doing now? Also if anyone knows of a good GI surgeon in NJ, NY or PA that has experience with CF complications that would be very helpful.

 

[Ratatosk]

DS hasn't had gallbladder issues yet; however, his doctor did indicate once he was in his teens that they would start doing ultrasounds on his gallbladder due to potential issues. Currently he takes actigall, which apparently helps to a certain extent. I would ask your CF specialist to refer you to GI specialist familiar with CF being that this one doesn't seem to have a clue.

 

[kaitlynb]

Thanks, I did ask my CF specialist to refer me to a GI guy that knows about CF. I was just surprised that he didn't do that in the first place. Thats great that your sons Dr. is being proactive. My Dr. never even mentioned it to me. I have always had different GI symptoms and when I had the gallbladder attack I was the one that brought up the possibility of gallstones to my Dr. I'm just frustrated that the my CF team doesn't have a referral base of people that know and can help patients that have CF. CF effects every organ in the body and I'm sure I'm not the only CF patient that has had gallbladder problems. I'm just frustrated with the lack of patient care and knowledge of CF.

 

[EmilysMomma]

I had my gallbladder out a few years ago when I was around 25. I have a lot of scar tissue also from the ilieostomy surgery also and my surgeon was concerned about it thinking there was a chance he wouldn't be able to get it out laprascopically and might have to be open abdominal surgery. Fortunately he did a great job, I do have about 5 incisions all around my stomach for different viewing angles so he could see around the car tissue, although they are all only about half an inch , and there's one under my breastbone where he pulled it out from that scar is about an inch. I was back to normal after about a week , getting rid of the gas from them inflating the belly was almost the worst. I had some back pain because I couldn't stand up straight for about a week.

It's nice not to have the attacks anymore , my gallbladder problems started when I was pregnant and the first attack I thought it was contractions because of the pain came on and intensified and then would come down and then repeat minutes later. I also was throwing up green bile, yuck.

Since I take enzymes I was able to resume my normal fatty diet. I know people without cf have to limit fat after this surgery since the gallbladder helps digest fats. Good luck!!

 

[running4life]

I've had mine out almost two years ago. Was a HUGE relief. I thought I was dying when I would have attacks (okay, maybe not that bad, but it is the worst pain I've ever been in physically). I went to ER for morphine until I would pass out. I didn't have MI as a baby so I didn't have that issue.

The surgery was so easy, pretty painless, and I was home the same day. The only thing was, I had to go on oral antibiotics because I wasn't able to cough and do treatments because it would hurt so bad. The gas they use to blow you up with is what is painful the day of the surgery. You feel like a balloon that will explode.

If you are in bad shape as far as feeling sick, fight for a good surgeon. The surgery is well worth it. I don't have a weight issue, but I avoid SUPER fatty foods often (mostly I don't like it, but also because it makes me have diarrhea).

 

[kaitlynb]

Thanks for the replies. I am not having any pain or attacks since last Monday so im happy for that. I just finished 2 weeks of iv antibiotics for an exacerbation that took my fev1 down to 40%. Im back up to 60% now which is close to my baseline. So I thought now would be a good time to have the surgery when I'm at my best and I still have the picc in. I'm just not getting the help I need from my dr. Are you guys in the tri state area? Who was your surgeon? Or do you have any names of good GI surgeons that also are familiar with CF? I don't want to make a quick decision on this but I also don't want to get caught in an emergency situation and then my fev1 is low and recovery will be difficult. Just waiting to hear from my Dr. And hopefully he was able to talk to the GI guy and they came up with a plan. Thanks in advance for any advice and recommendations.

 

[cheerfulpuppies]

What state are you from? Where is your CF center?

 

[LittleLab4CF]

If any problem exists from prior surgeries, the only difference should be laproscopic surgery or conventional. Find another surgeon. In the worst case, and it is a difference of 23hr operation/recovery or 12 days with a conventional incision. Gallbladders are removed every day from tripple bypassed, morbidly obese people. You may be frustrated by this but surgeons are all over the place.

LL

 

[kristal k]

yup I had the same problem. I now have a gen. practitioner that also is a pulmonary specialist, then I go into the cf clinic 1-2 times a yr to stay current on the new stuff. My gp found thyroid disease, blockage. gallbladder/appendix issues, and severe allergy to grass. I felt like a whole new person when all that was taken care of! I was pretty upset at first cuz the cf clinic told me that I was sick because of my cf and just had to accept this new baseline.

 

[EmilysMomma]

My surgeon wasn't even a GI specific surgeon just a general surgeon, Jeffry Zern, and I am in Delaware. I agree that you should just find a different surgeon who is more optimistic and comfortable with your situation. I agree with getting it now when you are just off iv's and at your baseline instead of waiting until it's an emergency or more urgent surgery and you may not be feeling so well. Good luck

 

[LittleLab4CF]

P.S. When you find a willing surgeon, likely the next one you talk with, be sure to ask him/her to look for evidence of prior gallbladder attacks, assuming you want to know. My hot gallbladder was found after I went to the ER for the classic heartburn or heart attack caution. It was way more intense than the worst heartburn I had ever had and though my heart was healthy, it had been a very upsetting day.

When the surgeon visited me after my laproscopic gallbladder removal, he said I had experienced many extreme gallbladder attacks in past years. When the bile duct beyond the gallbladder is blocked by bile or a stone, the gallbladder expands like a balloon, splitting the mesentary membrane surrounding the gallbladder. This open wound will adhere to a contact surface, leaving a "tree ring" for each attack. You might be surprised. I estimate I have been having gallbladder attacks going back to age 18, my surgeon estimated more than one a year for some time back. They all weren't the heartburn effect, in fact most weren't, rather the intra-scapular space so freqently identified as pancreatic pain.

LL

 

[kaitlynb]

I'm from NJ. I go to the Morristown hospital clinic. At this point I did find a GI Dr. that knows about CF so I am going to see him in 2 weeks and then I will hopefully have a better idea of what is going on. As far as the first Surgeon I saw he doe snot one to touch me but thinks I should have the surgery before it becomes an emergency situation and that I will defiantly have to have open surgery, laparoscopic surgery is not an option. Obviously he wasn't the right match for me. Thanks for all the replies it has been helpful.

 

[LittleLab4CF]

An emergency gallbladder surgery is about the last thing you want to have. With the famously slow process that happens under the auspiciouses of an emergency department. Two non CF friends have considerable damage resulting from emergency gallbladder surgery, delayed beyond repair. One lost his pancreas, and is now a brittle diabetic. The other has liver damage and both suffer PCS. Sooner rather than later is a good idea. Once I was signed up with a surgeon, he informed me that surgeons are on call 24/7 and I could call if I needed to go in prior to my surgery. Your non emergency room surgeon knows the urgency and can do the surgery when you are in crisis.

Good Luck, you will have great relief,

LL

P.S. don't automatically give into the conventional surgery over laproscopic. I can only guess at your potential adhesions, but they don't grow. If you had newborn surgery, the adhesions are super tiny. Adhesions are very common and many laproscopic experts do it every day. Just a thought.

 

[running4life]

Go laproscopic. I haven't heard of any doctors even doing the open surgery. My doctor was very competent and confident. You can find one - just don't stop searching. Also, if you are in pain, they will schedule you an emergency appointment. I had to call and beg, but it worked. Be your own advocate.

 

[LittleLab4CF]

Running4life,

Thanks for the reinforcement on the fairly universal laproscopic gallbladder surgeries. In fact many surgeons have such skills, they can pretty well deal with anything. Surgeons can do three times as many laproscopic surgeries over a conventional incision. I have been around long enough to remember when laproscopic surgery was novel and fighting to be accepted. Some of the worst fear mongering over minimally invasive surgery was perpetrated on a rather deaf public. Of course it is superior in every measure for the surgeon and the patient.

It still hasn't stopped conventional surgery, any laproscopic surgical consent contains a clause allowing the surgeon to switch to conventional surgery if laproscopic surgery proves to be problematic. This insurance is for the patient as well as the surgeon. Every so often laproscopic surgeons find something when they do the first internal peek and has to move onto a conventional surgery. The ideal situation would be to start out laproscopic because running4life is pretty spot on. Gallbladder surgery is planned as laproscopic and prepared for conventional. I think this might be why surgeons don't advertise conventional surgery.


LL

 

[Paula10]

Hi , I am 50yrs old almost51 this year and I had my gallbladder removed around 2001 I think. I don't know that it did much good that I had it removed (laparoscopically) but I inherited huge problems in my neurological system from Compazine a medication given by hospitals to prevent nausea. The worst nightmares of my life have come from that medication administered to me after the surgery. It literally changed how my neurons fire sending messages to muscles to cause erratic involuntary muscle movements (called Dystonia or Extra Piramidal side reactions). It was a horrific ordeal. And it wasn't my gallbladder I don't think that was giving me problems coz I still had other painful gastro complications. Mineral stones have been removed about a year ago. My pancreas has always been very affected and I cannot digest anything other than fruits. However I grew up in different nations and different foods (organic and I stay away from junk food, almost always eating home made foods/meals). I am not from the USA but have been here for 32yrs now. I was officially diagnosed here when I had my daughter. What has helped me get better all around is 'dead sea salt' (baths in it). Which is not precisely 'salt' but magnesium, selenium, etc 'minerals'. Bath ritual is a necessity for me and it has improved my lifespan drastically. My diet is very different from the typical AMerican diet (even for CFers). I do get a lot of pain when I eat regular American foods (and it is the fat) but also the 'additives' and many harmful chemicals in food here in AMerica. I stick with corn tortillas instead of bread (highly intolerant to wheat and the wheat and whey intolerance got worse after my gallbladder was removed). I seem to have episodes of dairy allergies more than I used. I could write tons but tonight Im tired. Just wanted to share that the surgery didn't do much for me and that many gastro pains come from pancreatic pain as well as mineral stones in the ducts. What you all need to watch out for? COCCI FUNGUS which nearly killed me two years ago. It is called San Joaquin Valley Fever and it is in the San Joaquin Valley of California. It was finally killed by prayers and a lot I mean a looooot of prayers on my part, and the Diflucan and my doctors monitoring me. But I believe this was a miracle coz even the news advertised that a good reason not to come out to California is for the presence of Cocci fungus which is lethal. incurable they said. and boy it was killing me. but I do believe in God and I do pray and I have seen m life for fifty one years and I have seen diabetes go away too. I highly recommend Jesus, He is my MASTER PHOESICIAN ..he has been my doctor since age 6 when I first asked Him to please let me grow up and not die of the maladies affecting me (I didn't know it was CF but I have seen God really move to save my life too). Don't give up hope on the Lord HE EXISTS and JESUS IS THE LORD and I have always prayed to Him on all my CF needs and I have seen them resolve all. but one. the bacteria inmy lungs. Have Faith coz FAITH HEALS and SO DOES JESUS. I have grandchildren today, an answer from Jesus after I asked him to help me grow up (I was dieing of CF when I was 6) and I did see adult life and children and now grandchildren.