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Old 03-19-2008, 07:13 AM   #1
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My Husband's Story w/Chronic Pancreatitis

I'm new around here, but I thought anyone with any info may be able to help our situation.

Six and a half years ago, my husband had gall bladder surgery. He kept experiencing a lot of continuing pain, but doctors couldn't find anything. Finally, a little over a month after the surgery, they found a pancreatic pseudo-cyst the size of an eggplant. They had to rush him to our state's medical university hospital (our smaller town didn't even have the knowledge to help him) and put him in emergency surgery. So, the last six years, he has gotten a couple of shunts to help "juices" flow better, a few incisional hernia repairs, bowel obstructions, etc. He has also gained a really bad case of diabetes since his pancrease can't keep up any longer.

He hasn't any specific problems with the pancrease in a long time. The last bowel obstruction was a year ago, and the hospital put him on iv for over a week to let it "work itself out". He was just released yesterday from another hospital stay after having two weeks of increasingly horrible pain in abdomen area. But all test results and ct scans showed nothing going on. GI doctor wants him to meet with a pain management clinic locally, but says it will be hard to find one that deals with chronic pancreatitis since it's a tough case.

He is only 33. After the past several years of being in and out of jobs due to hospitalizations, surgery recoveries, and pain, we made the decision for me to work full-time and he is going thru the hoops of applying for disability.

So, here's some of my questions:

1. He had one doctor a few years ago that said due to his many surgeries, he has a lot of scar tissue and adhesions. This doctor said that he would probably need surgery every 2-3 years just to "clean up" in there. My husband thinks a lot of his pain could be coming from these adhesions. But no doctor we are talking with now believes surgery is necessary. The just say it will lead to more scar tissue and not help the situation. Anyone have any experience in this area?

2. My husband wonders if the shunts are causing him the painful gas he feels daily. He can barely sleep at night due to tossing and turning from the gas. He thinks that since he hasn't had any specific pancrease or cyst issues in the past 5 years that maybe there is no problem with that any longer and the shunts are just letting unnecessary air flow in areas it's not met to. Doctors say that since he hasn't had problems that means the shunts are working and would never consider taking them out. Your opinion?

3. Is there really anything a pain management clinic can do in this area? We already dealt with a 2+ year of pain pill addiction and horrible couple months of withdrawl (which I am SO proud he did totally on his own). We both hate the idea of him having to be on pain meds for life.

I just need any encouragement if there are any answers to his problems out there. He keeps going for me and our boys, but I know he can't imagine feeling like this the rest of his life. And I feel helpless to try to make him feel better. Rubbing his back and feet only help so much. Is there hope that this can get better?

 
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Old 03-19-2008, 08:29 AM   #2
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Re: My Husband's Story w/Chronic Pancreatitis

Was he put on digestive enzymes to help digest fats and proteins? Could be he has pancreatic insufficiency. Pancrease helps to break down more complex foods and if he can't digest his food it could be leading to very loose, possibly greasy bulky stools and bowel obstructions...

 
Old 03-19-2008, 09:22 AM   #3
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Re: My Husband's Story w/Chronic Pancreatitis

Yeah, sorry forgot to mention that. He is taking digestive enzymes. Quite a lot.

 
Old 03-20-2008, 09:45 AM   #4
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Re: My Husband's Story w/Chronic Pancreatitis

I would hope the enzymes are name brand and not a generic, I've heard about problems with that. Another thing to consider was maybe he needs an acid reducer like zantac -- they'd help the enzymes work better. Could he have reflux?

 
Old 03-25-2008, 12:09 PM   #5
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Re: My Husband's Story w/Chronic Pancreatitis

I have some of the same problems for the last 2 and half years and I have had my gallbladder removed and in Jan. 08 had a hysto. and was suppose to have had my append. out with all the rest and the dr. couldn't get to it due to scar tissue and now that i have had the surgery i am having the same problmes i started out with 2 years ago after having a csection so I am thinking it is due to scar tissue but getting a doctor to do something is a different story I have been to several doctors in the last two years plus been to the er several times in the first year and then my family dr. gave me donital and green lizard to have at home and it has kept me out of the er but if i didn't have it i would still be going my stomach dr. don't want me to have them cause the donital or belladonna can be addictive but my family dr. said as long as i take it how it is perscribed it won't hurt me, so he is going to send me to a different stomach dr. but it is all so stressfull and I can't work due to the problems that I have cause not just stomach stuff but not knowing what it is is causing stress related problems and I can't take any meds for stress cause if it relaxes my body it causes more of the problems so I don't know but i am ready to scream.

 
Old 04-07-2008, 05:34 PM   #6
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Re: My Husband's Story w/Chronic Pancreatitis

First of all let me say, I am so sorry. Chronic pancreatitis is very debilitating and like any chronic illness it starts to define you. I am 32 years old, and have been fighting with chronic pancreatitis (officially anyway) for about 4 years. I almost died last year because of it, I was given two blood transfusions and was almost on a ventilator, but I pulled through!! Anyways, chronic pancreatitis is very painful and I know he doesn't want pain medication but the pain will only get worst if you do not take the medicine. In that being said, there are surgical procedures that can be done to help relieve the pain. I am possibly get one done soon. A temporary procedure that is relatively safe and works for about 70-80% of the people is a celiac nerve block. Where they take a needle and insert into the pancreas and kill the nerves off. Other procedures are removing part of the pancreas. My mother had this done about 18 years ago and it has worked wonders for her, and to-date she is still not diabetic. However it is rare that you do not become diabetic with 10 years of the procedure. Pain Management would do these procedures. I live in Maryland and I am care of Johns Hopkins, and they are really good and they are up with the newest and best trends. Is there anybody in your area, such as a unversity who can help you. It is very important that you go to the right doctors, otherwise the only thing most doctors will do will be to give you pain meds, enzymes and tell you to have a nice life. Also, pancrease did nothing for me. I am taking Creon20 (at least 3 with each meal and 2 with snacks). They work so much better. Make sure you limit your fat intake, it does make a difference. You may want to consult with a dietician to help you. If I can help you further, please do not hesitate. Good luck, and learn to build a relationship with God because sometimes the pain and life itself becomes unbearable. There are also support groups for pancreatitis, you may want to check them out for you and your husband. I know my husband has to take on a lot of the burden of raising our children and just everyday life, so as a care taker, it is very important that you have an outlet. Again, good luck.

 
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