I know that quite a few of us AIHAers are on these Boards. Can anybody give me their experiences with gall bladder removal?

25 years ago I had acute pain which was diagnosed as a gall stone. Although a scan showed a fairly large stone my surgeon decided to wait and see what was happening and for me to have immediate surgery only if the pain returned. I had no more pain.

I had ‘active’ AIHA for about 18 months which was luckily brought under control by Prednisone. Last year, almost 12 months after my AIHA went into remission, I had discomfort in my abdomen which was uncomfortable enough for me to take 2 Paracetamol tablets. As I have been very wary about taking any medicines I mentioned the pain killers to my Consultant Haematologist the following week when I had my 2 monthly blood check. I also told him that the discomfort felt like a very mild version of the pain I had experience with the gall stone. . BOY do I wish I had never mentioned those 2 Paracetamol tablets to my Consultant!!!!!!!!:dizzy:

My Gall bladder was scanned again and I have more gall stones

I have had no more discomfort whatsoever but another 12 months down the line I have been told repeatedly that I have to have my Gall Bladder removed. :eek: That it is a common operation for all AIHA sufferers.

I realize that a side effect of hemachromatoses is that gall stones can occur and that is what is probably happened to me but could anyone help me with the following questions.
• Does hemachromatoses continue at a high level even when you are in remission?
• Is cholecystectomy really so inevitable?
• Have you been pressured to have your gall bladder removed?

Hi. My AIHA is inactive at the moment, but still regular blood tests, etc. I've been fortunate not to have the gallstone problem. I'm just responding to suggest that perhaps you try to blood disorders thread as well. There's quite a number of postings there. When you are in remission all of your levels should be within normal range. Mine have been since I achieved remission a year ago. Unfortunately still coomb's positive. I'm facing a hysterectomy and quite concerned about still having the antibodies and what would happen if I need a transfusion.
Do you actually need your gallbladder removed or can you just have the gallstones "zapped"?
I hope you get the answers you're looking for.

Les

I had my gallbladder removed in Feb. 1990, after losing about 25 lbs., it is very common to get gallstones after a weight loss. I was diagnosed w/AIHA in July 98.

Les44 and Bluebelle2.

Thanks for the replies and suggestions.

Les, you mentioned blood transfusions. My RBC was so low and dropping so fast when I first got AIHA there was no real alternative but a blood transfusion. :eek: I was given 4 pints and had no negative side effects. :)

One of the reasons I have been given this week for opting for pre-elective cholecystectomy is that it will be necessary to pre-order my blood due to the delay it can take in rounding up supplies of my blood group. I guess this is good reason to have the operation now as it took 4 days to get the blood last time.

Thanks again, Jo

I have had AIHA since 1997, Over the years I have been treated with Prednisone, Imuran, had my spleen removed in 1998, numerous blood transfusions, haemoglobuglobin transfusions, rituxan 2 treatments, cyclosplorin (caused siezures), gall bladder removed last year with toxic liver levels at the time. Now I'm on cellcept(I LOVE THIS DRUG) prednisone and touch wood have been good since having the gall out and the combination of drugs. I definitely think having the gall out has done something for me, unlike the spleen. When I first was diagnosed I had the abdo pains way back in 97. After having 2 ultrasounds last year they finally found the small granulated gall stones bout 50 of em some sort record the hospital reckons(caused by medication etc.) This was my second hospital stint last year 4 and 1/2 weeks June and Nov 5 weeks (gall removed) been good since. I think I may have finally nailed this bloody disorder. so to speak. So I definitely think having the gall out is a good idea.

Jae.

joglyn,

my doctor measures my haemolysis by my r-tic count. He can see if it is in overdrive mopping up 'abnormal' red blood cells or not. Mine has slowed whilst the antibody is in 'hiding' however is does vary from time to time.

One evening about 6 I had mild chest pain. I had not had any heart related problems but knowing the symptoms I decided to get checked out. My husband called the hospital to ask about their system. Right away they said they would send an ambulance. My husband said that wasn't necessary to which they said it has already been dispatched. They arrived shortly and handled it like a cardiac patient.

ER follow through as a heart problem. Finding none they started another trail. As the night progressed so did the chest pain. By about 2AM they decided that it was gallbladder and told me to "go home and come back the morning". They had done lots of test and had scheduled a MRI. The nurse that had been with me told me that was crazy but he had no power to change it. By 6PM the chest pain was there more and kept getting worse. That time we drove to the ER where they told us to "have a seat and wait". I told them I could not but that got me nowhere.

We stood by the "out" door and when someone came out we went in. I sat on a stool at the nurses counter. They did not like that. Just then the nurse from the night before came in. He said to go with him. He put me in a cubical and very shortly thereafter I lost consciousness.

They admitted me to the hospital and during the night my condition worsened. They told my husband that had scheduled the surgery for 9AM. The next I knew it was 7AM and they had me at the door to the surgery with a group discussing the situation. The gallstones were small and few, not enough to cause the problems. My condition was critical. They said I would not survive the surgery because my potassium was so low. One doctor said he could put a catheter in my heart and infuse the potassium that way. After the surgery they told my husband that had the stayed with the 9AM schedule I would not have survived.

They could not "zap" them so made an open incision. They had given me 2 units of blood. My recovery went well considering the circumstances. The gallstones were small and few. I had not had any symptoms that would have led to suspecting the gallbladder. I had massive infections in my abdomen but we did not know why.

That was the only incident that I was aware of connected to gallbladder surgery. Since the removal of the gallbladder I have had no problems that I know of connected to gallbladder.

I only had trouble with my drain and the stent they had to put in after the surgery. Ended up having 4 Endoscopy's because of it. The first one 'migrated' (apparently very rare) so they had to put in another one, however couldn't get the first one out so they left both in whilst in hospital. Before being dispatched they went in again removed both stents and put in another singular one. Finally a week or so later they removed this stent and my AIHA has been good since. Down to 4mg of steroid but still on heaps of the cellcept though. I love this drug finally one that works. But am curious about this procrit about to go have a look of the threads for some info but if anyone has any personal experience to share it would be great. Just if this treatment doesn't work this time i am only left with haemoglobuglobin monthly or kemo. Neither are appealing so am looking at other options just in case.

Betty & jbee6.

Thanks for letting me know your experiences.

I'm due to see my Consultants next Tuesday. Have been doing a lot of reading about gall bladder removal this last couple of weeks. My Doctors have been really good up to now so it seems silly to ignore their advice this time. I have a few issues about the general anesthetic at my weight but I shall go with whatever they reccomend.

Jo

Goodluck with everything Jo, hope all goes well for you. I'm sure it will though, I only have three tiny little scars from the keyhole surgery. Nothing compared to the spleen scar.