Gallstones

[SunsetParadise49]

Well, today my GI doctor has strongly suggested the removal of my gallbladder. I really don't want to have it taken out but my mom said I have too. The cramps that I have been having have been from the gallstones which can be in the middle of your stomach (kind of underneath your heart) and on the upper right side. He said that some paitents even have cramps on the left side and think that they are having a heart attack...which is why my mom wants me to have it taken out. She said that then if I was having an attack, we would then know if something was wrong with my heart or not. I'm really not looking forward to this consultation on October 11th, but the doctor said it is a very easy operation, and usually very low risk.

I was really hoping that he would not suggest surgery but just to watch what I eat to not prevent any flare ups, but...look what happened!!!

Also, I have a small "Sliding" Hiatal Hernia.

[tracy]

Sorry to hear about your gallbladder.

I had to have mine out about 2 1/2 yrs. ago, it was very routine surgery. The only prob was I was not diag. with Pots yet, so nothing special was done, and I had a very hard time coming out of it afterwards.

I had 2 very bad attacks, and I could swear I was dying. After the second attack it was only 2 weeks till I had the surgery because mine was so bad.

Good luck and keep us posted.

[lthomas521]

Hi Gwendolyn:

While you are at the GI doctor's, you may want to ask to be tested for celiac disease, which is a common cause of gallbladder trouble and frequently goes undiagnosed. If they don't think to test you for it, they will miss the diagnosis. A friend of mine's son has celiac disease. She said that it took years before the docs figured it out. She said that the average patient goes for about 9 years between the first visit to the doctor for celiac-related problems and the actual diagnosis. Yet the testing for it is very simple.

The treatment is theoretically very simple: just don't eat anything with gluten in it. In practice, that might actually be quite difficult, because so many processed foods have some form of gluten (wheat, barley, etc.) hidden in them.

The longer you go without a diagnosis of celiac disease, the more complications you are likely to have. They can include allergies, anemia, hypothyroidism, and a whole slew of other problems. I have noticed that other POTSplace forum participants have mentioned that they have celiac disease. I wouldn't be surprised if celiac disease can cause or contribute to POTS.

For more information, see http://www.celiac.com/

[melly4]

I'm sorry to hear you are going through the gallbladder misery. But the pain will go away when it's out. I had mine out 3 years ago, and the reflux and pain went away. They took good care of me to keep my BP up, and it was done outpatient. Surgery is so scary, and my husband literally had to drag me into the OR, but I'm glad I went through with it. A friend of the family refused to have hers out because she was afraid to, and ended up with a ruptured gallbladder. She was in the hospital for 6 months having multiple blood transfusions and reconstructive surgery on her bowels that were damaged by the bile, leaving her husband to take care of their small children.

Your mother is wise to tell you to have the surgery. Just make sure your OR team is aware of your dysautonomia issues, even if your doctor passes this info along. Trust me. You have to remind them of everything!! Also, avoid onions after the surgery. I don't know why, but just about everyone I know who has had a cholecystectomy, including me, can't eat onions!!

Take care of yourself. I'll keep you in my thoughts and prayers.

Melly

[michiganjan]

I had my gallbladder out when I was only 23. That is quite young, but I had large stones. I was very glad to have it out. It helped a lot of my symptoms (not the POTS, but ones caused by the gallbladder).

If you have stones, they won't disappear. And if you have gallbladder disease it can spread to the liver eventually. A bad gallbladder with stones won't get better. I agree with your mother. Good luck and keep us posted. I think it will be big relief to have the dang thing out.

Michigan Jan

[SunsetParadise49]

Thanks everyone! Being 17, and this being my first surgery is going to be quite scary for me! Someone from DYNAkids gave me the following websites (any other info I need to print out and give to the surgeon would be greatly appreciated!) POTS surgery, CFS and Surgery.

Also, would you guys reccomend a flu shot? My GI doctor told my mom it would probably be wise. You guys think the same thing?

[Poohbear]

I'm sorry to hear you need surgery. I hope your appt goes well though and I'm glad you are armed with info about surgery prior to having it as this will hopefully increase the chance that you will have as "good" of an experience as possible.

Don't know what to tell you about the flu shot. Personally, I had horrible flare ups with the last two flu shots I got and I was told never to get the flu shot again. That's just my personal experience. I would rather wash my hands frequently and stay away from large crowds and people who have the flu. (In my case that's not too hard to do since I live alone and can't get out much).

There was recently some mention on the flu shot on an ndrf post. If you're interested check it out ..... http://216.149.163.247/ubb/Forum1/HTML/006295.html

Whatever you decide; I wish the best of care!

[SunsetParadise49]

Since my POTS is not caused by a post viral flare up, would that make a difference or not concerning the flu shot? It's just a thought I had.

[goldicedance]

I join the gall bladder removal club. The surgery is not bad provided it is done laparoscopically. I had my appendix taken out at the same time to avoid additional surgery in the future. Ditto---make sure your surgeon and anethesthetis (spelling) are both on board about POTs, the need for additional hydration, and careful monitoring of your blood pressure and heart rate. Hydration after the surgery is extremely important.

Re: Flu shot--my doctors (pulmonologist and cardiologist) urge the flu shot as well as the pneumonia vacinnes. Being down with the flu or pneumonia can be pretty devestating to a pOTs person. (I know many here do not share my thoughts about these vacines.).

Good luck on your consultation. Ask many questions. You may also ask that you stay overnight to ensure that you are well hydrated and functioning before you go home. I am not a strong believer in outpatient surgeries. My other adivce is to be sure to have the procedure done in a full facility hospital rather than in a surgical care center. You need to have all types of services available to you and your doctors.

We're all hoping that you feel more at ease after you go for your consultation. Keep us informed, please!

Lois

[briarrose]

I haven't had my gallbladder out yet but that might happen before long.

For me personally I've had problems in the past with the flu shot and I think that might have been the final smoking gun to the onset of POTS.

My doctor's were pretty insistant that I have the flu shot so they even tried me two years in a row getting half the shot vaccine one week and half the next week. I think I did alright the first year but the second year I couldn't even think about having the second dosage.

Everyone is different and it can be a trial in error. If you get the shot just don't do it within the couple of weeks that you have the surgery, that's my two cents.

take care

steph

[lthomas521]

Hi Gwendolyn:

If you have to have your gallbladder out at age 17, you really really really ought to be tested for celiac disease.

"Gall bladder disease or malfunction is often associated with celiac disease. It can cause pain in the upper right quadrant of the abdomen, just at the lowest rib on the right side. In one study of 1300 celiacs in Canada, 9% indicated that gall stones were the earliest presentation, sometimes followed by many years prior to correct diagnosis of their celiac disease. In another report, Dr. Kozlowska indicated that 13 of the 41 newly diagnosed celiacs she investigated were suffering from atresia, a condition which is a partial or complete blockage of the bile duct."

http://www.celiac.com/st_prod.html?p_prodid=121

"Diagnosis

A person seeking preliminary diagnosis must be consuming gluten. Specific antibody blood tests are used to identify the presence of CD and are the initial step in screening. Blood tests include: Anti-Gliadin (AGA) IgA, (AGA) IgG, Anti-Endomysial (EMA) IgA, Anti-tissue transglutaminase (tTG) and total serum IgA. It is essential that patients with positive antibody test, and those with an IgA deficiency, have a small bowel biopsy to confirm the diagnosis and assess the degree of mucosal damage."

http://www.celiac.org/cd-diagnosis.php

[SunsetParadise49]

Hi Gwendolyn:

If you have to have your gallbladder out at age 17, you really really really ought to be tested for celiac disease.

"Gall bladder disease or malfunction is often associated with celiac disease. It can cause pain in the upper right quadrant of the abdomen, just at the lowest rib on the right side. In one study of 1300 celiacs in Canada, 9% indicated that gall stones were the earliest presentation, sometimes followed by many years prior to correct diagnosis of their celiac disease. In another report, Dr. Kozlowska indicated that 13 of the 41 newly diagnosed celiacs she investigated were suffering from atresia, a condition which is a partial or complete blockage of the bile duct."

http://www.celiac.com/st_prod.html?p_prodid=121

"Diagnosis

A person seeking preliminary diagnosis must be consuming gluten. Specific antibody blood tests are used to identify the presence of CD and are the initial step in screening. Blood tests include: Anti-Gliadin (AGA) IgA, (AGA) IgG, Anti-Endomysial (EMA) IgA, Anti-tissue transglutaminase (tTG) and total serum IgA. It is essential that patients with positive antibody test, and those with an IgA deficiency, have a small bowel biopsy to confirm the diagnosis and assess the degree of mucosal damage."

http://www.celiac.org/cd-diagnosis.php

<{POST_SNAPBACK}>

Is this something that also causes heartburn? My GI doctor said that there is a curible disease that settles itself in some specific part of your body....right now I can't tell you where. A blood test would find that. Also I am getting a load of bloodwork done for the GI doctor so maybe the celiac thing you talked about will be a part of that?! But thanks for the information!!! It may come in handy someday for me or even another family member.

[corina]

Hi gwendolyn,

I can't help you with the gallbladder surgery or the heartburn, just wanted to let you know I get a flu shot every year. And guess waht: my doctor delivers it at my home! Isn't he the sweetest???

Wish you all the best when having surgery!!!

Corina

[DancingLight]

Gwendolyn,

I just have to type that all out b/c I love that name so much...

I may sound like a broken record here, but I highly recommend that you do a 'search' for the topics of gallstones, gallbladder surgery, etc. This topic has come up soooo many times and you may find more useful information in some older threads to help you to make your decision. In particular, in the past few weeks another woman (Dayna (username DSM--and i forget the other letters! oops!) posted about making a similar decision. Many people really walked her through the pros/cons of the decision.

I would really stress being sure that you need the surgery and why you need your GB out. I had mine out in January 2005 and, while it was very, very necessary surgery, I am still very sick from it...I have written my story in depth in that older post, as well as many other posts following my decision and actualy surgery...although, you may not want to hear my story cause it's not so grand! But do read Dayna's post. I can help you find it if you need help, just let me know!

Many, many of us have had our GBs out though and many with little problems...so if it has to go, it has to go!

As for the flu shot, my POTS doc is against getting the flu shot. But, my previous POTS doc was all for it...so it really, really depends. There are debates in older threads on this too and I am sure it will come up more soon as it is getting to be that time of year again...

My doc claims that he has had patients GET CFS from POTS and does not recommend the shot. Instead, use one of the new meds available now if you do actually get the flu. I have had some years when I did get the flu shot and others when I didn't before I found this doc...So it's a tough decision. But, I am no longer getting it. Last year, there weren't any to get anyways!

Let us know what you decide to do...

Emily

[baby_boy]

OMG ive been having these cramps on the right side of my upper chest and in my stomach, they usually come on the day after ive had something alcholic to drink. Im gonna head to the doctors and see what they say.

[lthomas521]

Hi Gwendolyn:

My guess, which is based on the experiences of several friends and acquaintances, is that your doctor will not test you for celiac disease unless you specifically ask him or her to do so.

As for the flu shot: If people think that they had a bad reaction from being injected with dead influenza viruses, just imagine how they might have fared if they had been infected with live ones. I used to work for a respiratory/pulmonary medicine journal, so I've read lots of medical journal articles about flu vaccines over the years. I get a flu shot every year, unless there is a bad shortage of vaccine.

[faithinspires]

I wish you the best and a speedy recovery with your gallbladder surgery.

I had 3 unrelated surgeries this past year. My daughter had three unrelated surgeries this past year. All six surgeries went fine. We did give them information on our conditions and they were very careful to monitor our heart rate and blood pressure before during and after the surgery. We did well. Wishing you the best!