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Forum Name: Gastroenterology Topics

Question: Dilated Pancreatic Duct


 Nanse - Sun Feb 05, 2006 11:21 am

I am 52, female, 5'4", 250 lbs. current meds: .112 synthroid for Hashimotos, 40mg Crestor for hypercholest and hyperlipid, .5 Xanax PRN for anxiety.

Past surgeries: tonsillectomy as child, vaginal birth at age 25, bunionectomy, cholecystectomy and incisional hernia repair all 10 years ago. Routine colonoscopy due to age, with EGD due to epigastric pain in April 2005.

Add'l diagnoses: Depression, GERD, hiatus hernia (sliding), NAFLD. No meds for these diagnoses. Also gastric erosion, one and caught early and took Protonix for until few weeks ago.

...In mid September I went off SSRI's without weaning and had GI symptoms I associated with the withdrawal. Terrible nausea, no vomitting; epigastric pain through to back and mostly on right side; loss of appetite; fatigue (and increased tinnitiis); dehydration; one occasion of passing undigested food as a BM.
Primary DR. treated as flu (temp was elevated, no fever). After 2nd visit for this with primary Dr., we decided to follow up with GI DR. who did the Colonoscopy w/EGD the previous April because I felt so bad and didn't want it to happen again and pain was now mid and right abdomen at edge of rib cage.

Since then, in the last 2 months, I have had Abdominal US (showed previously diagnosed Fatty Liver, nothing else). Pain continued and now was on left side as well. Hurt to touch, to bend, to sneeze was excrutiating.... Had MRI which shows dilated pancratic main duct. Had an ERCP but the duct could not be accessed to inject the dye. I am not sure why. I do know this GI Dr. thinks I've had many episodes of pancreatitis. I used to tell my previous Dr. I thought I was having pancreatitis but he said I wasn't sick enough; that I would be in the hospital if I had it...Just had an EUS Friday. This GI Dr. says he saw dilated Common Bile Duct... ??? I am confused. I thought he was looking at my pancreatic duct, not the CBD. I will call tomorrow for a follow up appointment with the GI Dr. who did the ERCP as he is my regular GI Dr.

These Dr's did CA19-9 and CEA labs which I am assuming came back good because the Dr who did this EUS says he saw lesions to biopsy.

I am so tired of pain, not knowing what to eat, feeling so fatigued.

What else can I do or request? I feel like it is taking so long to get an answer to why I am feeling so bad.

I have been researching and I'm wondering if my main problem is NAFLD. I still have slightly elevated cholesterol. My trigs, which were over 5000 (no, that is not a typo, it is 5000) are down to 377 and of course need to go lower.
If I get the fat off of me is seems like it will help everything, yet I am feeling so unwell.. I have lost a minimal amount of weight from the not eating but I need to move, exercise to get rid of the weight.

It seems like a viscious circle.

Any helpful ideas for me to help things get better? Things to request of my GI doctor? An idea of what should happen next in this journey?

I thank you very much for any input you can give me; I appreciate your time.
 Nanse - Sun Feb 05, 2006 11:30 am

... I did not mention that there is no family history or pancreatic or liver disease.

I have a half brother who is on dialysis, although I don't know why. I have another half-brother in good health and a sister in good health, all older.

Parents are deceased. Mother had HTN, macular degeration. Father had late life HTN, glaucoma. He did not go to doctor's regularly.

Nanse
 Nanse - Sun Feb 05, 2006 11:50 am

...sigh...sorry... also wanted to mention I do have edema (legs) and have had very itchy, sometimes red palms w/peeling skin (as opposed to flaking like I can have when the thyroid is not functioning properly).

Nanse
 Nanse - Mon Feb 06, 2006 8:14 am

error in post #1--
The doctor who did the EUS said he saw NO lesions to biopsy..

sorry, but have been anesthesia hangover....

Nanse
 Theresa Jones, RN - Thu Feb 09, 2006 9:43 am

User avatar Hi Nanse,
Bile ducts and pancreatic ducts drain through the same small opening (Ampulla of Vater) which is held by a sphinchter (circular muscle) Sphincter of Oddi (which functions in prevention of reflux of intestinal contents back into bile and pancreatic duct) Blockage of the bile ducts from a stone or scar tissue/adhesions cause abdominal pain, nausea, vomiting, and sometimes jaundice if blockage persists. Biliary Dyskinesia (Sphincter of Oddi Dysfunction) seems to occur when there are spasms or scarring. Abnormal dilation may be often associated increased enzymes made by the liver, pancreas etc. Lab tests/liver function studies when elevated may indicate blockage. Other tests aside from a EUS and ERCP to assess severity of pancreatitis and to rule out the possiblity of other serious conditions are CT Scan, and MRCP. Inquire about the other imaging diagnostics and lab work with your physician.
NAFLD may of course cause abdominal pain but not in the same severity or type as experienced with gallstones and pancreatitis.
Some signs of compensated cirrhosis related to NAFLD may include a large hardened liver, prominent abdominal veins, redness of the palms. In decompensated cirrhosis, the liver may be a decreased size with the other above mentioned symptoms but also included are accumulation of fluid in the abdomen (ascites), edema in the legs, etc. Although there has been no single effective treatment for this particular condition, decreases in weight if obesity is present, control of cholesterol, triglycerides levels, etc., would of course be beneficial. Do you have or have you ever been evaluated for Diabetes as well? Prior to your return appointment with your physician, make a list of questions and concerns so that when you are in the office these things won't be omitted. I hope this information has been somewhat helpful.
Sincerely,
Theresa Jones, RN
 Nanse - Thu Feb 09, 2006 8:07 pm

Hello Theresa,

You've been very helpful, thank you.

I went for my follow-up appointment this morning with the Physician Assistant, whom I like as much as the doctor. She reiterated that there is no pancratic cancer (whew!) and I had more labs done and will see the doctor (GI) in 2 weeks.

They may do another ERCP and look at why they couldn't complete it (he could not get the pancreatic duct to fill when they were attempting to inject the dye). While there they will again look at the duct openings for blockages or possible growths. Also, they will be looking for constriction or spasming of the Sphincter of Oddi and will correct it if it is constricted. (I thought that they were going to do that during the first ERCP). They feel that after the pancreatis they diagnosed Dec 19th and the subsequent clear liquid diet that I stayed on for 5 days that I should be feeling much better than I am. So they will continue to follow me, as I continue to have pain and nausea and no appetite.

I did have an abdominal US, and an MRCP (I called it an MRI but it was with the dye, etc) and a gastric emptying test. No CT scan though. No evidence of stones or masses. Many labs have been done: blood sugar, liver, kidney, pancreas labs, all normal except for when I had the pancreatitis and tumor marker CA19-9 and CEA. I have high cholesterol & trigs which are being treated and which have come down considerably. I am continuing to lose weight; 16 lbs since Dec 19th.

The Physician Assistant said my liver is not too greatly enlarged and shouldn't be causing me pain or problems.

Thank you so much for your reply; I appreciate it very much!
 Theresa Jones, RN - Fri Feb 10, 2006 9:17 am

User avatar Hi Nanse,
Thank you for using http://www.doctorslounge.com
An update when your time permits would be appreciated.
Our best wishes!
Sincerely,
Theresa Jones, RN
 Nanse - Thu Feb 23, 2006 1:17 pm

Hello Theresa,

I will see the GI doctor next Tuesday, after following up with his phyisician assistant. She mentioned he 'may' want to do another ERCP to continue to look into why the pancreatic duct is dilated and wouldn't fill with the dye for the Xray when they did the 1st ERCP. One thing she mentioned was the Oddi again, which I thought the GI doctor was going to be looking at when he did the ERCP and surgically opening the Oddi if necessary. I assume when the duct wouldn't fill with the dye, the GI doctor thought of cancer so wanted to rule that out first by ordering the EUS. The PA talked about the area of the Oddi/Vater is another common place for cancer to start and can be hard to detect and that the Oddi may need to be surgically opened; this is why she thinks he may want to do another ERCP.

My question: I really WANT him to do another ERCP. I feel relieved
that the EUS showed no cancer, but I want to know more. I want to know why the pancreatic duct is dilated (I understand the Common Bile Duct is dilated as can be expected in a person who has had a cholecystectomy) and why it wouldn't fill with dye and I want the Oddi opened if possible/necessary.
So.... how do I approach the GI doctor and let him know this is what I REALLY
want him to do... without him thinking I am trying to tell him what he should do? I don't want to step on toes, but I want answers and I will do what I have to to get them. I just want to know how to do it as tactfully as I can and not cause him to think I am trying to run his show....

Any ideas for me?

Thank you so much!
Nanse
 Theresa Jones, RN - Thu Feb 23, 2006 7:49 pm

User avatar Hi Nanse,
You could bring up the discussion that you had with your Physician's Assistant to initiate the subject. Then explain that you would appreciate any information that could be provided as well as the advantages of performing another procedure including what measures are taken to alleviate the symptoms. That should be subtle enough to not risk "stepping on toes" so to speak. Best wishes!
Sincerely,
Theresa Jones, RN
 Nanse - Thu Feb 23, 2006 7:55 pm

Theresa,

Thank you so much! I like that approach!

I really do want answers and relief!

We'll see how it goes Tuesday and I'll post back and tell you what the doc has to say. He is really a nice man and I like him and trust him. Now I know how to approach him with the respect I want to show and that he deserves.

Thank you!
Nanse
 Theresa Jones, RN - Thu Feb 23, 2006 8:19 pm

User avatar Hi Nanse,
Good ;) I will watch for your update!
Sincerely,
Theresa Jones, RN
 Nanse - Thu Mar 02, 2006 8:05 pm

Hi Theresa,

I followed up with the GI doctor Tuesday. He said that he had really been concerned about possible pancreatic cancer when he couldn't get the pancreatic duct to fill for the ERCP, so he and I are both very relieved that the EUS ruled out cancer!

However I am still having pain and he mentioned another procedure. He doesn't push it because it is riskier; he leaves it up to the patient to request it after he mentions it. I had told him I want to know why I still have pain, and I did want the procedure. He is referring me to a group of specialists he knows well. I asked him if he agreed with my decision and he readily and emphatically said yes he does. So I feel good about it. However, I thought I knew what the procedure was...I thought it was a biliary manometry. Now I can't find any info on that! Maybe another type of ERCP? And the group he is referring me to will call me to set up the time for the procedure so I have to wait until they call. I feel so dumb! I may call his office tomorrow and ask them to look it up for me so I have the name for it. If I do I will post it here.

Thanks for your interest. It was a scary thing to go through!
I asked about future medical follow up and the doctor said we will discuss it when we get the results of this next procedure. He did say that people who get pancreatitis (he thinks mine is chronic) have a 20% greater chance of pancreatic cancer, so that is good to know for following up on. He also gave me a standing lab order so I can go in for labs when I think I'm having another attack. This was the 1st diagnosed one, but I think I've had many over the years. My last doctor, an endocrinologist, said I was not having pancreatitis because if I was I would be so sick I would be hospitalized. I now know that is not true.

Sorry the name of the procedure is not known yet, but I will post when I find out what it is. Besides I like to research things before I go to have them done!

Have a great weekend!
Nanse
 Nanse - Sat Mar 18, 2006 7:29 am

I had my 2nd ERCP done Wednesday. The doc was able to get into the pancreatic duct just barely, after much effort and with a fine needle because it is so narrowed. The x-rays show the duct is dilated and the Biliary ducts are okay. He was not able to try to open the narrowed duct.

Next is open surgery to either open the duct, flay open the pancreas, or do a Whipple procedure, depending on what they find when they get in there. Each is to allow the pancreas to drain.

I saw a surgeon yesterday who can do it but is an hour away (same hospital that I had the ERCP at Wed.) and I am going to see if there is one closer who can do the recommended procedures. The recovery times are 1-2 months which worries me because I am my sole supporter.

I am so fatigued and I just want it fixed.

Nanse
 Theresa Jones, RN - Mon Mar 20, 2006 8:39 am

User avatar Hi Nanse,
You may want to check into some agencies that may provide you with financial assistance prior to having your surgical procedure so that will be at least one less concern while you recover. To begin, you may want to contact your local Health and Human Resource Department, also ask for additional available resources that they can recommend. Our best wishes to you for a quick, uneventful recovery and I hope you again will consider posting an update when your time permits.
Sincerely,
Theresa Jones, RN
 Nanse - Fri Apr 21, 2006 10:42 pm

Hi Theresa,

I hope you are stil here.

I just lost a long post to you! I hope I can remember all I said. Maybe this time I can keep it shorter...

How does one feel confident about making a decision for surgery when not everyone around them agrees with their decision? I have decided to have the surgery, which will probably be the Whipple according to the surgeon in Tampa.

My sister in law (a nurse) is not in agreement because it is such a major surgery.

I attempted to get an outside 2nd opinion and that surgeon was so negative right away that I called back and told him I had changed my mind about the 2nd opinion.

My original GI doctor, who did the 1st ERCP, referred me to Tampa for the 2nd ERCP (after an EUS). The surgeon who performed the 2nd ERCP and was finally able to get into the duct to inject the dye for the xray after trying for 2 hours, referred me to the surgeon who is proposing the surgery. This surgery will be open surgery; initially it was to open the duct if possible... do a Peustow procedure if opening was not possible and if Peustow was not possible due to the condition of the pancreatic tissue then the Whipple procudre would be done. When I spoke to the surgeon proposing the surgery, he told me he had discussed my case with a visiting professor and that the visiting professor suggested going right to the Whipple for best results. While talking with the surgeon on the phone that day he patiently answered all my questions, including his mortality rate (0%--one elderly patient died of an unrelated heart attack). I trust this doctor very much; he is very confident and that is reassuring to me.

Today I asked my primary doctor about the Whipple. He said he would not have it or want his wife to have it done unless 3 doctors told him it was necessary.

Do I seek out more opinions or do I have 3 opinions with my original GI doctor, the GI specialist who did the 2nd ERCP, and the surgeon proposing the surgery? I really am quite comfortable most of the time with my decision, but I have times I question whether it is the right decision, especially when I am around people who disagree with my decision.

This is exhausting! But I want it done, I want to KNOW it is or isn't cancer in there... and I want it over with.

What would you do? Get more opinions? Trust yourself (hard for me!)?

Thanks for listening!
Nanse
 Theresa Jones, RN - Tue Apr 25, 2006 5:56 am

User avatar Hi Nanse,
My sincere apologies for the delayed reply. A Puestow Procedure is essentially a portion of the small intestine is connected to the pancreas allowing adequate room for emptying of pancreatic juices into the intestine. The hospital stay may be 1 week or longer depending recovery etc.
The Whipple Procedure is certainly an extensive surgery. During this procedure, the head of the pancreas is typically removed as well as a portion of the small intestine, bile duct and possibly a portion of the stomach. The digestive tract is then reconstructed. So as you can see when the two procedures are compared the Whipple procedure is again much more extensive. The expected hospital stay for this procedure is generally speaking 2 weeks. Let me first say that you have to be confident in your decision as well as in your physician. The decision is yours to make and should not be influenced by outside sources so to speak. However, I will voice this concern. Second opinions should be welcomed and it makes me somewhat uncomfortable that a specialist would be adamantly negative about something that would be assuring to you or your family. I am sure that everyone around you is quite concerned and only wants the best for you. I also can't blame you for wanting this over and done with especially considering you have been ill for quite some time. I hope that you will continue to keep us posted and our best wishes to you.
Sincerely,
Theresa Jones, RN
 Nanse - Sat May 06, 2006 12:17 pm

Hello Theresa,

I saw the surgeon yesterday. We are going ahead with surgery on June 8th. He will still attempt the papillotomy first, then the Peustow, then the Whipple (pylorus preserving) as the last resort.

I asked why I felt better after the last ERCP when that surgeon was finally able to get into the duct after several hours of trying. He answered that it probably means that the duct was able to drain even though the finest wire was used to inject the dye for the xray and he also said that the surgeon was not able to get all the way into the duct. The pain is back now but since I did get relief after that ERCP he says it means that I should also get relief from the surgery, so that is good.

I'm nervous. I'm going to do give a unit of blood for an autologous transfusion, which is likely he said.

He really left it up to me, saying since he has no evidence of cancer then it's up to the patient to state the symptoms are affecting the quality of life to the extent that surgery is needed. I do think so, but boy I am having 2nd thoughts... maybe just fear..or I don't like that it was up to me--what do I know!! I know that I want to know what the stricture is and I know that I trust this doc and I think it needs to be done sooner or later and I'd rather get it over with. Just scared...and it's so complicated when you have to involve your employer, family members to drive you, etc.

Anyway, thank you very much for being here!
Nanse
 Theresa Jones, RN - Tue May 09, 2006 5:32 am

User avatar Hi Nanse,
There is no doubt that you are nervous. Your decision, based on your quality of life at this point essentially means a condition that prevents you from carrying out daily activities as in healthy states one is capable of performing. When a treatable condition prevents such activities even though there is no evidence of a malignant state, this warrants enough to proceed with a procedure but must be stated as such so that it is not deemed medically unnecessary. I am glad to hear that you have faith and trust your physician and I hope that your employer and family provide you with the support needed for your recovery. Our best wishes to you and it is a sincere hope that all goes well. Good luck to you and updates with be watched for.
Sincerely,
Theresa Jones, RN
 Nanse - Thu Jul 06, 2006 7:26 pm

Hello Theresa,

I had my surgery June 8th and it was the Whipple that was performed. I am a month post-op and feeling better. I was in step-down ICU the evening of the surgery and stayed there for a week, then went to a regular room. I had a lot of pain but it was managable when I could remember to push the PCA pump button--they had to keep putting it in my hand because I forgot it was there. I was so glad to get the tubes out, one by one, and to get up and moving. I walked the halls a lot and that helped. I came home 11 days after the surgery and with my intestines barely wakened up and working. I stayed on the liquid diet til I saw the doc, 22 days post op; he said I could eat anything I wanted to and that most patients don't wait for him to say it is okay to eat. So I have been eating since July 1st. I think it is helping some, but honestly I can't taste anything and digestion is slow and painful. Today I decided to use Ensure a few times a day. Things look good but taste awful and everything feels so dry when I swallow it. It is a little discouraging. The doc asked if I felt better than before the surgery and I told him I couldn't honestly answer that yet. I don't feel better yet, but I hope to. He will be sending me back to work in a couple of weeks I think and I feel like I still have a long way to go to be able to do that.
Anyway, just wanted to post an update and to thank you for your reassurance prior to my surgery; I was very very scared.
Nanse
 Theresa Jones, RN - Sat Jul 08, 2006 8:51 am

User avatar Hi Nanse,
Thank you for the update. I am glad to hear that the procedure has been completed. This procedure is certainly an extensive one and it may take a little more time for you to really notice a difference in how you feel. As for the dry feeling when you swallow, try taking sips of liquid just prior to tackling solid food. It's awfully difficult to enjoy the taste of food if you always have the feeling of it becoming stuck (or the fear of it) for that matter. If you do not feel recovered enough when the projected time for you to return to work arrives, discuss with you physician about an extended short period of time. It may also be beneficial to you if your employer would be in agreement to adjust your work schedule in such a way that your return isn't to a fulltime schedule at first or a full workload, (Sort of easing you back into a routine) verses going back into it full force. Make sure that you take time for yourself, and our best wishes on your continued recovery.
Sincerely,
Theresa Jones, RN

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