Cindy's Story

My name is Cindy. I am 28 years old and married to a wonderful man who has been by my side dealing with this horrible condition. We had only been married a little less then a year when this all started and when you take those vows “for better or worse in sickness and health”…he has definitely been there through it all and for what lies ahead. Thank God for him.

Let me first say, thank you to you, Mary, for the information on your site as well as giving us all the opportunity to tell our stories. I feel it is helpful to all of us suffering from this horrible condition and reading others stories makes you feel that you are not the only one out there with this horrible condition. I feel it brings others with the same or similar condition in touch with each other, if they want to. This has happened for me.

This is on the lengthy side, but for you to understand it all, I feel I need to give the complete history. A year and half prior to February, 1999 I was having pains when I ate certain foods (i.e., sauce) and my primary doctor said he thought it was just Gastritis and stay away from spicy foods so I didn't eat sauce out. He put me on Prevacid, once a day. Later I was switched from Prevacid to Prilosec.

Then in February, I started having bad attacks of pain in my abdomen and went back to the primary doctor. From then through April I was sent for many tests from blood work to GI series, Sonograms, cat scans, and the list goes on and on. All these tests came back negative but the blood work showed acute Pancreatitis. The doctors kept thinking it was my Gallbladder, after all, the two main causes of Pancreatitis is Gallbladder or alcohol. I am not an alcoholic; I do not even drink. He told me go see a Gastroenterologist. The Gastroenterologist did repeat tests and still wasn’t coming up with anything. He put me on Creon-pancreatic enzymes - 2 caps per meal and said stay on Prilosec. He also said stay on a Low-Fat diet, meaning no more then 3g fat in the food. I was on various painkillers at home, changing when they didn’t relieve the pain anymore (Darvocet, Vicodin, Percoset, Extra Strength Vicodin). In the hospitals I was on Demerol then they added Visterol, now I’ve been on Dilaudin.

The Gastroenterologist also sent me for a sweat test for the 1 % chance of cystic fibrosis. It sounded so crazy that I couldn’t have this because it is a childhood disease and it would have come out prior to now. You also need to have the gene from at least one parent to have it. Well, to make a long story short I was told I had it. Thank God we followed up at a cystic fibrosis care center at another hospital and did repeat tests and a gene test and turned out I do NOT have it. I don't even have the gene. But what hell they put my family and I through. After that I was scheduled to go for an ERCP but it wasn’t going to be for a month and I could not wait. I went back to my primary doctor who in turn called a different Gastroenterologist and had me go right over to his office.

This Gastroenterologist had me switch from Creon to Pancrease still 2 caps per meal. He had me go right over to the hospital for blood and urine work and I was told to get a Gallbladder series done the following 2 days - it is a 2 part/day test. The next day, while I was going to get the Gallbladder test done, they asked questions about what medications I was currently taking (because I had to take pills for the second part of the test) they stopped and called my doctor. The test was not done at that time because it turned out the doctors were trying to get in touch with me because the prior days Amylase and lipase were very high and showing in my urine as well. I was told to meet them at the emergency room and I was being admitted.

This was in April 1999 and I was in the hospital for 11 days. Repeat tests were done again and the Gallbladder series, all of which did not show what was causing the Pancreatitis. They were trying to get my levels to come down with being on IV the whole time in order to perform an ERCP. The levels never really came down and I had to have the ERCP done anyway. The ERCP showed Pancreatic Divisium. He said when you are born you have 2 ducts that should fuse together as one over time. Mine did not, they were smaller than usual and the major duct did not work.

Films were taken and I was told go to New York City and see this specific stent surgeon who does stent surgeries everyday. He warned me though that stent surgeries may not fix me and he has seen some patients get worse. But at that time with the pain, thinking if I didn’t get the stent put in I wasn't going to be fixed anyway and still have this condition I wanted to hear what the surgeon had to say. When I met with the stent surgeon he was optimistic that he could help me, we liked him and trusted him. While under his care, the Pancreas enzymes were increased to 4 caps per meal and 2 caps each snack. The Prilosec was increased to 2 caps per day.

The lowest my Amylase ever was 581, at a good time. The highest I have been until recently was 2,000 and change. Now 4,000 and change (12/99). On 5/20/99 the first stent was placed in the duct and two weeks later removed; I wasn’t better. Each time I went through these time periods my food intakes got worse and worse and that's where I lost 53 lbs.

On 7/6 I was back in the hospital for the doctor to possibly put another stent in. He did exploratory at the time and found that not only did my major duct not work but also the minor duct had a kink/stricture in it. He was not able to place a stent there at this time so he stretched/dilated part of the duct. I was told wait 2 months and come back for placement of a stent. He was hoping the stricture would open a bit to put a stent in next time and in the meantime give my insides time to rest and stay on strict diet.

On 9/8/99 second stent was placed. Was told if tolerated, it will be left in for 6-8 weeks. The appointment was set for 7 weeks. But by 5½ weeks I was having horrible pains - at this point my acute Pancreatitis now went chronic. I could not handle the pain, could not move, I had blood work done my Amylase was up again. At 6 weeks (10/20/99) I was in the hospital to remove the stent. They mentioned the pain could possibly be from a scar tissue build up. There was no scar tissue build up, my body was kicking out the stent and the kink/stricture was still there. The stent was removed, debris cleaned out and a larger stent placed. I was told if tolerated, 6-8 weeks for this stent to stay in, that the longer it stayed in the better chance of it working. If it didn't work and the pains were still there when eating the next step was to see a bypass surgeon.

I knew by my eating issues and pain that this stent did not work either. The bypass surgeon was already told about me and he was looking at my films during this time. In addition, when my surgeon saw me in the hospital in September and how much weight I lost he told me to see a Clinical Nutritionist/Dietician to help me as well as stay on eating small meals more frequently. The Dietitian had said that for me I needed 2100 calories to maintain my weight and to gain 1/2-1 LB a week. I was on a low fat-High Carb diet now. I was only able to get, if I was lucky, 1000 calories into me a day because of the pain and not being able to eat a lot of things. I wasn't even able to drink Ensure light because it gave me pain now. I even tried predigested nutritional drinks she recommended but I still had the pain.

I ate just to eat with all the pain. It was then that it was brought up if this continues I might have to be put on TPN - total parental nutrition - feeding tube as a supplement to food. Of course, I didn’t like this idea. During Sept-Oct the surgeon and some other doctors were saying they were not sure if the kink/stricture was my source of my pain and if there is something else going on causing it. They said my pains should be immediate after eating to hours later, which sometimes is true. Other times it's during the night or the next day and that is not typical. A blood test fractionating my Amylase was done and was in question. This one came back saying 100% Macro Amylase, which was explained to me that the Amylase was coming from somewhere other than the Pancreas. So I had gone to see another surgeon on the same level as this one (the stent was still in at this time) hoping he would come up with something. He spoke with my doctors, dietitian, looked over all my films, sent me for a Doppler Sonogram, which looks at your artery blood flow. That came out negative.

He switched me from Prilosec to Axid, as he said sometimes Prilosec could cause abdominal pain (changing to Axid was OK'd by my other surgeon also). He did repeat blood tests including fractionating the Amylase which now showed 76% from the Pancreas and the rest he said was because my Amylase was so high that it was attaching onto cells in my body and not flowing smoothly through my kidneys. At the end of all this, the surgeon said he did not see anything else and it all stems back to my original issue and that was all with him.

At this time the TPN was brought up again. During the conversations between the doctors and dietitian they decided I was not going to just have the TPN's a supplement with food but total and no food at all. To say the least, I was upset but I had weighed 157 lbs. prior to 3/99 and dropped down to 104 lbs. My insides were so swollen and I was weak. They didn’t want me to lose any more weight, wanted me to gain some weight, calm my Pancreas, stomach, etc., all down from the Pancreatitis.

On 11/22-11/27 (yes, for thanksgiving too) I was hospitalized for insertion of the infusaport. I am on home TPN and I feed during the night for 14 hours. Due to being so skinny and this is a foreign object in my body it was painful in the beginning, now just uncomfortable. It did calm my Pancreatitis down which is great after all the pain I was having. I do not need to take the enzymes and axid while on TPN. I have named the TPN/feeding tube Marguerite, as it sounds better then saying feeding tube or TPN.

On 11/30 (still had the third stent in) I went to see the bypass surgeon. He was very optimistic and is from the old school of looking you over from head to toe to make sure there isn't something else causing the Pancreatitis and pains before he would just cut me open, in case I don't have a chance of the surgery helping me. He did not believe the kink/stricture is my source of my pain/problem. If it was, my films would show a bulging/backup on one side of it and it does not. He said besides the TPN I can have some water, (yes- for weeks the other doctors said only sip of water when taking a pill and lemon swabs) try lettuce with lemon and salt and we will speak in a week on how I am doing.

He said get off the painkillers as my pain tolerance is low after all this time and if surgery is an option down the line I won't be able to get through it all. He went back to the hospital where my videotapes of each ERCP were done and saw a narrowing in the head where the duct meets the head of my Pancreas. He called me and said get the stent out now as it sometimes can cause this/make it worse and might be causing/adding to my pains. He had asked the other surgeon to take films he needed when he removed the stent. He also noticed blood results on my thyroid showing hyper. There were two done and one was high. He wanted me to see an Endocrinologist.

I saw the Endocrinologist who examined me and said he doesn’t believe I am hyperthyroid. He said the reason the level was high and will continue to be up and down is because I am on birth control (for ovarian cysts) pills and estrogen does that. He explained that the thyroid tests that doctor did, did not back the estrogen out of it for the results. Also my pituitary gland would be extremely low if I had it, which it isn't. On 12/8/99 the stent was removed, films were taken and then we spoke again. He said the Gastroenterologist and himself want to get me off the TPN because it was already 4 weeks of being on it and the risk of infection goes up as the weeks go on. He said start eating some foods --adding cucumbers to the lettuce, bread, ensure, etc., and to wait 4 hours between each. The hope was I could go back to eating and get off the TPN.

On that Friday I started to eat and by Saturday I was in pain and by Sunday and Monday I was back to not being able to move again so I stopped eating and kept on just TPN until I was going to speak to the doctors again. When I spoke with the bypass surgeon again he had spoken with the Gastroenterologist already and he said the Gastroenterologist will handle all the day-to-day care with me and he would be there if and when I needed to get operated on or need to discuss something with him. The Gastroenterologist is local and the surgeon is not. I was told again to eat, don't wait the 4 hours in-between, and keep eating even with the pain to see what happens. This time take the enzymes and Axid.

In the past they said they didn't make a difference but I followed instructions from the doctor. I was told when I get the pains to go have blood work done to see if my levels were high again which always happened in the past. Basically, the surgeon was not going to operate on me without seeing definite correlation between the pain and levels at this time when I did not have a stent in. They had me eat for couple days through pain and the same thing happened again and kept getting worse. On two separate days I had blood work done. The results came back and the Gastroenterologist called me that my first Amylase was up to 2,000 in change. The next day it was 4,000 in change with a lipase of 9,000. He said call the surgeon, if he’s going to operate it should be now.

I spoke with the surgeon he was happy to hear this because now he said I have an objective disease without stents in. Now he would operate after the first of the year, as it was Christmas week and then New Years week. We went back to see him to discuss the surgery which is scheduled for January 3, 2000. The surgery is the Puestow surgery on my duct. He is going to cut where the narrowing part of my duct is and bring my intestines up and connect. It could turn out that he might have to do a Whipple surgery depending on if he cannot locate or get to that duct and has to go through the head of my Pancreas. In addition if there is hardening of my Pancreas, which was caused from the stenting, he will have to cut that away as well. He said he is leaving my spleen in.

At this time, prior to surgery the GI doctor called to say my hemoglobin dropped a lot. It should be 11.5 and up to I'm not sure the level. On past tests it was 11.1. Well on 12/23 he just got them back-it dropped to 8.5 so he said now I'm anemic--opposite of diabetic. At first he said call the surgeon because I'm going to need a transfusion prior to surgery on Monday. He also mentioned I needed more Vitamin K even though they had been giving me injections (the nurse) when she comes 2 times per week. I was given another dose of Vitamin K prior to surgery.

UPDATE: On January 4, 2000 I was scheduled to have the Puestow surgery. However, I had more fixing that needed to be done than just be drained. I ended up having the Duval surgery. I was in the hospital for 9 days. Besides draining, 40 percent of the Pancreas was removed due to disease and the Gallbladder and spleen were removed. When I read my records from surgery it says that the following was performed: Distal Pancreatectomy X3 Splenectomy Cholecystectomy with exploration of common bile duct Duodenotomy Sphincteroplasty of Bile duct Sphincteroplasty of Pancreatic duct Roux-en-y Pancreaticojejunostomy Rous-en-y Jejunojejunostoy Laparotomy.

In the past the doctors said that it looked like I had 2ducts, one that didn’t work and the other with a kink/stricture in it. But, when they opened me up I had 6 no good ducts. They resectioned 3 parts of my Pancreas; they opened it and sewed it to the inside of my Pancreas. They brought a loop of the intestines up and connected that. Now the Pancreas drains from both ends directly into the intestines. I was told this is something I was born with and it took many years to get to this but that I would have needed this surgery in my lifetime whether it be that it came out now to effect me or later in life.

Thank God by drinking Coke/Pepsi soda my sugar levels had gotten better that I did not need a transfusion prior or during surgery. The surgeon believes I'm fixed and so do I. It might be too soon to tell but prior to the surgery I had not been able to eat anything and was on TPN. During my stay in the hospital they had me start on soft foods, chicken cutlets, etc., and I did not have Pancreatitis pain. Only a week since I’m home I have already eaten some of my foods I craved--pizza and carvel ice cream with hot fudge. I eat small meals right now as my stomach has shrunk a lot as I haven't eaten regular in a year as well as I need to still heal. I was told it would take 4-6 weeks to get my appetite back. I do have air/gas pains from the surgery but I am told that will go away in time. I currently take prescription Tagamet and Tylenol with Codeine, if needed, for pain. So far the only pain I have had is if I sneeze, cough, laugh and now the incision is starting to heal so it is giving me some discomfort.

The TPN port was still in prior to going in for surgery. For me it was easier as I don't like needles. They used the port when needed for the IVs and anesthesia. We are awaiting results of the biopsies of the parts taken out and blood tests, which will take a couple weeks. Prior to my surgery my Amylase was up to 4,000. When it was tested with eating in the hospital it was down to 400. On 1/25/00 I went back to the hospital for removal of the TPN port. All went well except for the usual soreness that comes with it. On 2/8/00 I had a follow up appt with the surgeon. Got great news that everything looks good and healing well. I do not need to see him for another 3 months unless I have a problem. I need to continue taking the Tagamet for 3 months then that is it. I have gotten myself off Tylenol with Codeine as it caused problems with constipation for me.

As far as not having a spleen anymore he said I need to get the vaccine every 5 years and if I have any work done for instance dental work I need to take an antibiotic. I am still healing from the incisions, cannot lift things and need to take it a little easy but I'm definitely on the road to recovery. On top of all of this I had just gotten terminated from my job as they said they needed to fill my position. I was told I can re-apply and that they do want me back. I am in the process of doing so and hope for the best.

Update July 2000: Prior to my surgery in January I had become slightly anemic. It was told to me after being able to eat normally again I would get better. I never was anemic before having pancreatic issues-- not being able to eat and being put on TPN. In April/May the primary doctor did blood tests and it was found that the anemia is worse than before. My iron and Ferritan levels are half of what they should be. I was told to take an iron pill (Ferrous Sulfate) once a day and to do three hemocults (stool samples). I couldn’t continue taking the iron pills because they caused really bad migraines for me. After only taking 2 days of iron pills I had a migraine for 4 days and I had to get a shot of Toradol to stop the migraine.

The hemocults showed blood. I was told between the hemocults and blood tests I was/am bleeding internally. My GI doctor scheduled me to have an Endoscopy done on July 3, 2000 to check if the bleeding is from gastritis, bleeding ulcer or from the surgery. In the past I was checked for gastritis and bleeding ulcer they were negative. My doctors said 9 times out of 10 its from the surgery, that inside everything might not be healed yet. So we will see what they say after having the endoscopy done.

I still go to physical therapy to continue to work on building my strength and flexibility. I am doing really well with eating. The only foods that I cannot eat are spicy and peppery foods, which was a problem before. Some goodies make me feel sick to my stomach, maybe they are too rich. Besides those, I eat normal now and have no pancreatic pain when and after I eat. The surgery in January definitely was a success.

On another note, back in January when I was let go at my job, I was told I could re-apply and I wouldn't have a problem getting back in. It never worked out because there was a change in upper management and she did not give me a chance. So I had to move on. I pray that I am fixed and can lead a 'normal' life going forward. I pray for all of you to be pain free and healthy as well. If you would like to contact me please E-Mail me. I thank you for letting me share my story.

UPDATE - It has been awhile since I updated my story. I would like to first say that it has now been over a year since my Pancreas surgery. I can still say it was a success. I hope it gives all of you hope that miracles do happen; I am living proof of that. Back in July 2000 the endoscopy that was done to check for bleeding was negative. The GI doctor said the hole either closed up already or was very small. In time, my anemia went away. I believe this is because now I am able to eat foods that my body was deprived of when I was sick and on TPN (I was never able to take iron pills due to migraines).

Unrelated to the Pancreas issues I had, I had to have two kidney surgeries this year. I tell you this because I was told it was another "You were born with" condition. A Diverticulum (pocket) half the size of my kidney had developed in my left kidney. The urine was able to get into the "mouth" of the Diverticulum and stones had formed. The real issue at hand was I could get infections from this as well as I could have excruciating pain from this. My husband and I do not have children of our own yet and one day would like to. I was told by several doctors not to get pregnant with this until it is taken care of.

In January 2001 (one year form my Pancreas surgery) I had percutaneous surgery, which is less invasive, on the left kidney. The doctor removed the stones, drained the Diverticulum, sealed off the opening and cauterized the walls of the Diverticulum hoping it would collapse on its own. However, the surgery did not work and now I was in pain. In February 2001 I had open surgery on the Kidney. The Diverticulum was just too big to collapse on its own. During surgery the doctor also found I had another "mouth/opening" to the Diverticulum. The doctor said that I was the first patient he saw with two openings. During surgery both openings were sealed and parts of the Diverticulum were cut out that it is no longer a pocket. The surgery was a success. I am doing well now and will be returning back to work this month. I hope and pray I am done with all surgeries and can go back to living a full life.

Update Feb 2003

As I spoke about prior back in 2001 I kidney surgeries due to a diverticula. I was told by the doctors to not get pregnant until this was taken care of. Then in 1/2002 we bought our first home. In between the buying of the home and summer of 2002 I had complications due to a build up of scar tissue in both pancreas ducts from the 1/2000 surgery and had to get that taken care of.

After all this we decided to speak to the doctors regarding my health and our thoughts was that this was the best time to start our family as I was doing well again. All the docs as well as we went to see a high-risk doctor agreed with our thoughts. I would be high-risk due to the CP and would be monitored closely for diabetes, malnutrition and CP attacks. Seven months later we did it!! I have had a couple appointments with the doctors and sonograms. Everything looks fine! We did have to wait a little waiting game to see if it was 1 or 2 babies in there. This was a possibility because my HCG (pregnancy levels) did not just go up by the 60% to double in 2-3 days. They went from 496 to 2,217. But we now know its 1 baby!

The estimated due date is 10/5/03 but the doc will probably induce me earlier due to the CP. Below are some sonogram pictures of our baby to meet the world this year for you to see and that miracles do happen! If you would like to contact me just click on the email envelope below. You can view the sonograms by clicking on the "Pics" button below.

PS.  As my GYN put it at one appt he gives me a lot of credit due to all I've been through, being a fighter and being so positive. My response- I got through all of this and fighting and I will continue to fight and get through this pregnancy to deliver a healthy baby!!!

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