Anyone had Gallbladder removed due to Chronic Pancreatitis?

Pancreatitis
#1

I’m really scared. In early June, I was admitted for yet another pancreatic flare-up. My lab work was not very good at that time, and I was fussed at for waiting so long to come in. Things that bothered me were: the elevated SED rate, elevated liver enzymes, and elevated WBC’s, amylase, and lipase.

After 7 days in the hospital, lab work returned to normal and the pain got better, so my PCP discharged me.

I saw my PCP in the office, 6 days later, and had phlebitis in both arms. Along with that, I had yellow pus coming out of two IV sites. My PCP did not want me to go on oral antibiotics so soon after a flare-up for fear it would cause another one.

I toughed it out until July 11th, and was put back in the hospital due to infection and pancreatitis. My PCP was more cautious this time and decided to do a chest x-ray and a CT of my abdomen w/ contrast. Here comes the scary part to me:

  • First, they found a 2mm (non-obstructive) kidney stone in my left side.
  • Second, the radiologist pointed out to me on the small bowel follow-thru, that I have a duodenal ulcer. There was also a narrowing of the duodenal intestine, where food is getting trapped. He then started to push on the right lower quadrant of the abdomen, which was VERY tender and stated that even though GI is not his specialty, he recommended getting my Gallbladder looked at.
  • For the cherry on top of my big fat cake that is my life right now, my PCP will no longer treat me at my local hospital because she wants me treated where my GI is accessible.

Out of all of that, the thing that disturbs me and make me the saddest, it not being able to be treated at the hospital of my choice, which is a small hospital and most of the staff know me and my history and I no longer feel like I have to prove that I am sick because they know me and my prognosis so well. Namely, that I have a debilitating, life threatening, and painful chronic condition.

So here is my question; I would like to hear from anybody who has CP, and had to have their gallbladder removed after diagnosis of CP.

I guess what I really need is for some people to talk me down, per se, and help me to relax. Instead of feeling like the sky is falling. I guess the problems I am having right now have to do with me not having any control at all what-so-ever over my body. That is ever so distressing.

Any insights or inspiration that you can offer me would be great.

I am so sorry it took me so long to get back online, but I had to deal with 2 hospitalizations in 2 months.

With Love and Hugs,
Angela

#2

hello angela my name is nancy i been coming to this site for sometime now i read all the posts and learn from them . i saw your post today and decided to post. i had severe pains for 1 yr beyond anything i could imagine. i was at the hosp er 6xs and no1 knew what was wrong yet the pain bordered me on insanity, at times on the floor of the er room crying cause i did not know where to place myself. i believe my pain brang me to the edge of insanity. well finally they gave me a cat scan of my abdomen with contrast like you . it came back that my gallbladder was collapsed and i had an unspecified mass in my left liver lobe. i was sent to a gastro surgeon which my appointment was not to be for 2 mos . i made another 4 trips between that time to the er and still all they would give me was meds and send me home . finally my appointment arrived and by this time my urine turned brown my stool bright yellow and i was in misery could no longer tolerate any foods or liquids. the doc sent me staright to the hosp for admittance. i was scheduled the following morn for may gall bladder removal . after waking up i was told that i would need another procedure cause i had numerous stones in my common bile duct all together he said that i had more then 100 but less then 110 what he stand and count lol lol. i went following morn but by this time all my vitals were crashing i was admitted into ICU until my next procedure. after all was said and done i was told my liver counts were elevated and i could go home as long as i did not over medicate myself and returned if i was to be in alot of pain. i toughed it out 4 6 days and had to return. i had pancreatitis something i never heard before. well making this story come to an end i have never been the same and i believe it is due to the stones being in the bile ducts for so long and the doc said by looking at them they were in there for a while. my opinoin is only that but the longer you delay getting out your gall bladder/ duct stones the more chance and stress you place on the pancreas which can lead to bouts of pancreatitis. just food for thought out of all the tests i had prior not 1 not even cat with contrast showed my stones in bile duct so i would say play it safe hun and get what ever is in there causing you problems out before it gets any worse. my best wishes to you nancy

#3

Hello Angela,
While I can’t give you advice about your specific medical situation, I can relate to you wanting to stay at "your’ hospital where you know the staff and don’t have to explain everything all the time. I think that’s part of having this diesease that really sucks…for lack of a better term…among many things.

I wanted to drop you a note to say that you are in my prayers, and will continue to be.

Take care,
Rob

#4

Hi Angela,
I’m sorry to hear what a rough time you are having. My daughter and husband both have hereditary CP-she has it much worse, but both of them have had their gallbladders removed. It is a pre-requisite with our GI doctors. Both have had it removed prior to an attack, but my husband suffered a big one after removal because they did it laproscopically. they have found that the air and dye when done that way, hits the pancreas, so it flares up. My daughter had regular surgery(she was 15 at the time) and didn’t have an attack. Unfortunately it didn’t stop the attacks, especially for her-as I have written, she had the Puestow done last Oct. as a last resort.
But I think you should have yours removed-it sounds like it could be causing many more problems having it in. Good luck and please take care.
Terri

#5

Hi Angela,

I know how you feel I went through whatever you are going right now. I know your case is different because you got it when you are a child. I feel comfortable with my hospital closer to my house and with the
doctors and nurses. First of all I have to tell that today is a very good day for me. I went to pain clinic and we were falling short of a week’s medication when we go to India, because we couldn’t get the tickets exactly for a month as the returning rush is too much so we are coming on 4th Sept. And luckily I saw a new Pain Specialist who is the new Director of the Pain Clinic. My earlier Dr. was so nice and he has disappeared since one year and nobody will say where he has gone and I missed him so much. So every month I was going for just refills but not to talk to doctor and tell how I am feeling. I just wanted my doctor back so badly. Today we had appointment with this new doctor and we had explain all the situation and I was thinking he is not going to
understand all the things and they are not going to give me extra medication. So, I already wrote to my GI and he agreed to write in case pain doctors don’t write. I was fine. Once the doctor came in he pulled the chair and started talking about India where he has been recently for a conference and he liked the people and the way things are there. He said, they figured out how to give us extra medication. They are going to give us for a month prescription and also another 10 days prescription but can’t promise whether the Insurance will pay. We said, we are prepared for that. And we talked about how scared I’m because I’m traveling after 9yrs but I told him about the good Drs. we have there in case I get into trouble. Then he said, you are all set, there is nothing
to be worried. It was his first day of work as Director and I asked him can I be his patient. I told him after a long time I felt like talking to my previous Dr. So, now I have good pain specialist with whom I can communicate and not go there just for refills. And I came home and opened my emails I saw that you have come home. Isn’t it a very good day?

I’m sorry I couldn’t finish what I was talking to you and I know the kids need our attention. I think the girls must have missed you so much. For a while Angela forget about everything and ask them to come and sit
with you in your bed and have nice talk with them. What did they do when you were in the hospital may be they already told you all that. But sitting next to you,holding you, looking at you, feeling you what you
are going through they need to know what’s going on with mommy. It’s up to you whether to tell them or not. Everybody deals with kids in a different way.

Angela it’s not fun to find out that there are so many things going on with your health. It is scary. I know one day I’m going to get in the hospital when I can’t take this pain and they’ll do tests and they might find few more problems. Because to get up and do all the things and keep my pain under control I’m on high dosage of medication but I don’t lie down all the time. Maybe one nap in the day sometimes I can’t even take
that and I keep myself busy with so many things. I don’t find time to do some things sometimes. But I don’t want to stop doing what I’m doing because they have changed my life so much. Totally distracted from my
pain and doing things I like gives me happiness and happiness is the best medicine anyone can have right? And I have found so many friends and that is another great medicine to keep me happy.

Please try to look at the things from different point of view. By worrying about going to miss the hospital, those doctors, the staff you are not doing any good to yourself. Give it some time. Right now you need to pull yourself together and get your pain under control. You know very well that the stress and tense situations may make the pain much more worse. So, for now moving away from big picture come to your home, start looking around, just feel how good it feels to be home after so many days.

Do you have garden, just take a look at them, or they doing well, or do they need to be watered. The family was so busy and worried about you maybe they forgot to water them. What’s your favorite place in the
house, sit down there or lie down there and if you can take a nap there just lie down and try to imagine your girls when they were babies, or take a look at their album it totally takes you into a different world.

One time when I came from the hospital I was very upset and my daughter who was just 3 years old wanted to play with all her hair clips, hair bands, so she spread everything down and trying to put some in her doll.
I watched her sometime and then I bent and took some clips in my hand then suddenly my daughter said, mom can I put all clips in your hair and make it beautiful. I said, ok. You won’t believe we had so much fun with
her hairclips. She has put all the clips on my head and then hair bands on top of them then some flower shaped clips so that they’ll look like I’m wearing flowers in my hair. I put in her hair some. Then my husband
saw both of us having so much fun he took a picture. Another time when I came from the hospital my daughter’s hair wasn’t done and I said, do you want me to comb. She had very long hair until her waist. I had very long hair too. Then we remembered that my father-in-law has sent some Indian hair decorations like we have to braid the hair and then put them at the end of the hair with gold color things hanging down. It looks beautiful. We both made up hair beautifully and then I said, we should wear Indian dresses so we wore just Indian shirts on top of our pants. Then we pretended that we became models so with Indian scarves we gave lot of poses for the photo shoot. That time my liver enzymes were going up all the time and my GI was insisting that I should go for total Pancreatectomy which my surgeon is not ready to do. And my GI doctor kept saying that, ’ if you end up with Type I diabetes we can take care of that very carefully, I don’t know why he is refusing. It’s the only option you have.’ To get my mind off continuous thinking and driving myself crazy I needed to do something different and the activities like we had done always helped me to relax and smile with her. Sometimes we put the Indian songs and dance until we get tired or I clap to the music and she dances and we have so much fun. Sometimes we roll down with laughter because she does all the funny steps instead of doing the steps from the movies.

In the evening when kids go to sleep you can tell all the worries to your husband and if the tears flow let them,they’ll take out lot of burden or pressure from your shoulders or mind. Please remember you just
came home need to recover and when you gain some strength back then you can sit down and think what are your options. We will research and see what are the procedures, or any other options are available. When you
feel little better then you can take step by step. One step at a time darling. You don’t want to run fast when you are not feeling well. We are all here and maybe we can help you to figure it out what we can do about these problems, ok? Right now you have to get your pain under control, your thoughts together so that you can move forward very carefully. It may not as bad as you think and like I found my doctor today you may find it more comfortable seeing GI doctor and the other hospital you may go next time when you are in trouble may be better and not that bad. I know all the doctors, nurses know you better in this hospital but try to give a chance to other doctors and nurses and who knows before you know you may start liking it very much.

I love you Angela.

EVERYTHING IS GOING TO BE ALRIGHT. WE HAVE GOOD MEDICAL FACILITIES AND THERE ARE SO MANY RESEARCHES ARE GOING ON AND SOON THEY MAY FIND SOME KIND OF THINGS TO MAKE US MORE COMFORTABLE OR TOTALLY CURE THE DISEASE, WHO KNOWS. THERE IS NOTHING WRONG IN DREAMING DEAR FRIEND. I KNOW YOU ARE GOING TO BE PERFECTLY ALRIGHT. WE NEED TO DO WHAT IT TAKES TO GET BETTER FOR OURSELVES AND FOR OUR FAMILIES.

Take good care of yourself and don’t keep beating around the bushes and make yourself totally tired out and more frustrated which is not going to help you anyway. Remember step by step and everything is going to be alright.

Lots of Love and many hugs.
Durga.

#6

Angela,

Having one’s gallbladder removed is really not a big deal at all. You, fortunately, can have it removed laporoscopically. I had my stomach sliced fron one side to the other just below my belly button. You will recover quickly and, believe me, if you get a gallstone upto your pancreas, you will suffer terribly with a pancreatitis attack that will be the mother of all attacks. Prevention is worth it in your case. Don’t worry about what hospital does it; no one there will question your illness if you have your gallbladder removed becuase it is common and only removed when absolutely neccessary. Relax. Come down. All is well. I am happy that you will get that thing out.

With love and care,

Anyse

#7

Hi Angela,
I understand where your at. I was always sent out to the “large hospitals” where I was told they could give me more care vs. my small hospital here in Temecula, and when I lived in Washington. It is better for you though. With the Pancreas and Liver, you can get very very sick fast, and want someone with the expertise to treat you. Trust me, my first ERCP was done by someone “new at it”, who cut the bile duct too much and from that point on I had problems with scar tissue ect… after… now here I am with Chronic Pancreatits and a severly scared bile duct(13 ERCP’s later) needing to have it dilated at least once a year.
Having your gallbladder out is the easy part and will help you with the gallstones, there is also medication they can give you to help prevent sludge, Actigall.
Get your gallbladder out sooner, rather than later. You will be fine. It’s ok to feel overwhelmed and just tired of “being sick”.
Please know you have support here.
Liz

#8

Hi, Angela–

My gallbladder was allegedly taken out first, but in hindsight the docs are guessing I had SOD all along and that led to the CP-- although now they’re even thinking that it’s Cystic Fibrosis that lead to the whole mess and to the CP, too. I just got genetically tested and will know more soon.

The lap-chole, which is the usual way to remove the gallbladder “should” be simple. I won’t hide that mine wasn’t and led to the first two (16 days) of what has become years of hospitals, ERCPs, etc. The other sort of bad thing is that you can still get gallstones for a year or so after having the gallbladder removed.

As for your elevated labs, it’s pretty common to have all kinds of stuff go off w/CP-- it’s what they keep saying about my fevers/high WBC, elevated panc levels, etc., so hopefully in your case, too, it’s not “more” than that. Non-obstsructing stones of a few mm aren’t a big concern-- I get them often… they only hurt to pass, but unless they start obstructing or get larger, don’t sweat that too much.

I’m not trying to minimize anything you’re going through-- just letting you know I’m there, been/am going through it, too-- and really understand.

Hope I can keep helping in some way. For now, take good care of yourself and don’t stop advocating for what you want or need and who/where you want in charge. You have an absolute right to hire/fire docs and hospitals, and while I get that there are limitations to this, make sure you stay #1!

Many hugs, love, friendship and support–

Lisa

#9

Hi Angela, I can feel for you not wanting to go back to the hospital,but after my second or third attack they did all the tests and said my gallbladder needed to go. They told me it had alot of fine stones and they removed it laposcopic. It wasn’t to bad. On the narrowing, one time I had a major attack and they sent me to the gastro doctor at Duke Univ. to open up my duct again and when he tried to do the ercp I still had food in my stomach and he could’nt get the scope alittle ways past my stomach. He told to come back in 6 weeks and tried again and still could’nt get through. They did the CT scans,etc. and when I had that attack it burned my intestines that food could barely pass. So I had eat very little and have CT scans every month till all the swelling went down and then went back to Duke to finally have my ERCP,it took 7 months to do that. I know its frustrating, and scary but hang in there you have alot of friends out here that cares. Love and hugs, Larry

#10

Angela,

I know how you feel about changing doctors/hospitals. I made the conscious decision to do so, after much prayer, and was amazed at how God orchestrated the whole thing. I ended up with a great doctor, very well known, and a hospital that is rated very highly. Remember God knows the plans He has for you. He can be trusted and you will be amazed at how wonderful His plans are. Keep the faith, God Bless.

Vonnie

#11

Angela,

I had my gallbladder removed AFTER my CP diagnosis. When I had my pseudocyst surgery in Oct., it had to be “open surgery”, because the position of the cyst made it impossible to do laproscopicly(sp?). I had never had a problem with stones/sludge, but once the Surgeon got in there, he said my gallbladder was badly scarred. I asked what would have caused the scarring, and he said from previous pancreatitis attacks. I had never heard of pancreatitis CAUSING gallbladder trouble, I thought it was the other way around.

Having the gallbladder removed has made no diffrence, I still have daily pain, but the surgeon said had he not removed it, I ran the risk of the scar tissue growing and causing major problems.

A word of caution. I had the WORST diarrhea afterwards. I could barely leave the house for about a month, All that has cleared up now, but keep some Immodium on hand just in case.

I wish you the best of luck in whatever you decide to do.Take care
Cindy

#12

Hi Angela,

Hope you are feeling little better now. So many people responded and came up with suggestions. Hopefully reading the emails must have helped you a little bit. When you hear so many problems at one time it’s natural to get scared and worried. When I had Symphecterectomy the pancreatitis specialist said, I can go home as he removed all the stones he found and that was the cause of the attacks. I packed up and waiting to leave and started feeling uncomfortable and within seconds I was rolling with unbelievable pain. Then the whole staff came and took over doing lot of tests to see whether there is any damage caused by the procedure and my levels touched the top of the ceiling. I was in the hospital by that time continuously two and a half months. And I easily gave up hope to go home and be with my family. Then early morning the Specialist comes and tells me he is going to go in one more time and then handing over my case to Surgery dept. Two days ago he said, I can go home and I was mentally prepared for it, and then now he says I need to have a major surgery which might take care of the problem.
.
I panicked. I can’t reach my husband because I was in those big hospitals away from home and he is taking care of 2 month old baby and my 9yr old son. There was a big snow storm.I needed to talk to somebody. I was getting restless. I came out of the room and started walking and if somebody smiled I was asking do you have time to talk. But they didn’t. Specially the staff. My nurse was nice she gave me Ativan to calm down and still wanted to be among the people didn’t want to sit alone in the room. I saw a doctor who looked like Indian. There is no rule that if you are an Indian means all the Indians will talk to you. So, I requested my nurse to ask him to come and have talk with me. She told him and he came after a while and I explained what’s happening then he said, if they are talking about the tail of the Pancreas there is nothing to be worried, there is good chance of getting better to. And he talked little bit about India which part of India I’m from and he is from etc. I thanked him and he went away.

My friend from Nevada who used to call everyday at 3pm to see how am I doing and she is the one who gave all suggestions to talk to doctors, to get all the info from them, I can refuse if I don’t like something etc. She talked slowly and it helped me so much then we also talked about what are we going to do when I get home. In summer they are trying to come and she is going to get into the hotel very close to our house and visit us and spend time with us for 2 to 3 days. She not only calm me down but also gave something to look forward to meeting them. And I got the news that my mom is trying to come so I diverted my mind to think about my mother’s arrival, my friend’s arrival etc. Give it some time you’ll be alright.

My gall bladder was taken out when they did the Peustow and until then they did so many tests to find out whether there are any stones in Gall bladder and it didn’t show anything. But when she opened up to do the surgery she found it totally damaged with full of stones and she took it away immediately. I didn’t feel anything. Actually it was better if it was there just like that who knows what could have happened.So, about the Gall bladder thing you shouldn’t worry about it. There are so many friends among us who don’t have gall bladders.

I’m getting lot of pain started last night. And going to rest for the rest of the day and hope it settles down soon.

Lots of love and many hugs.
Durga.

#13

hey angela, sounds like you are going through alot right now. i am so sorry for this and i pray for you. i had my gallbladder removed after i was diagnosed with CP. it was damaged but did not do the trick ! sorry to say. it was after that i had a partial panectomy and lost my slpean in it. then a year later they wrapped my tummy in gortex mesh to repair 10 hernias, pain still continues daily and requires pain meds and nausea meds. i just don’t want you to get the let down i had, i thought it would fix the entire problem, but did not. but if you have it removed maybe it will help with some pain, there is always hope ! i will be thinking of you and i admire you for your strength and willingness to always help all of us, you are a true angel and inspiration for me, lots of love and hugs, just relax my dear lady !
love jule