I never hear any one make mention of the problem with constipation, afterall it is a digestive problem but never do I hear anyone discuss it. Am I the only one. C’mon guy’s don’t leave me open here all by myself!!! LMA
I’m with you. I was just thinking why aren’t we discussing about this. We are not small kids to be shy of talking constipation caused by the Pancreatitis or sometimes the pain medications cause constipation. I
cannot take any laxatives because I tried suggested by doctors and they all give me horrible cramps. I drink lot of water, I just started doing soups and take Colace and Phillips Caplets, which are not working that
effectively for me. Maybe it’s because I’m on tube feedings because that itself changes the whole digestion thing. When I get attack the feedings get stopped, this time for a week and I lost too much weight, I
weigh 75 pounds now. Whenever the feedings are stopped and when they restart again it’s like starting all over again. I try my best to take care of this problem. But doctors said, it’s not going to be like normal people either alternate days or it takes 3 to 4 days sometimes. I think small exercises or walking regularly, if you have strength to do may help. I can’t do because I can’t lose any more weight. If anyone has any suggestions please let me know. I cannot take too much fiber or fiber filled laxatives because it is going to effect my little bit pancreas whatever left after the Whipple procedure. Sometimes the constipation can cause the attack as the
doctors say when the bowels don’t move normally and it kind of puts pressure on pancreas and gives an attack. I had those kind of episodes too which I controlled at home.
Some body wrote today that Pain gets worse during the periods time. It’s totally true. My gynecologist suspect the endometeriosis but they don’t want to do any surgeries as my major surgeries has changed the
whole system. They tried low dosage of pills which I never tolerated and stopped as I was throwing up. Then the doctor suggested the injection which stops periods for 3 months. I asked her if I get any allergic
reactions can you reverse the medication because it is going to work in our body for 3 months. She said, no. Then I said, I don’t want to take the risk. I don’t want to go for removal of Uterus and the doctor also
is not in favor of it. I read somewhere that sometimes during the menstruation period the body releases more Tri-glycerides which are full of fat and it is the enemy of Pancreatitis. So, it can also trigger the Pancreas and cause the attack. I go through this very painful time and again only pain shots are the answer for now which cause constipation. You see how all things are connected.
Any ideas about constipation or painful periods? Hope you all have pain free night.
Lots of love and hugs,
Durga.
Have you tried MIRA LAX, you can buy it over the counter now it used to only be available by prescription. You just mix it with water or juice and drink, it doesn’t cause cramping and usually works overnight. Even though I have the opposite problem, I occasionally am constipated from the morphine and when I use this it works great.
Good Luck.
Hope you all have a pain free night.
Leanne
LMA,
All of the narcotics that I have taken over the years have made
constipation a real problem. This is normal for most CP
patients . . . need to take stool softeners and some other thing to
make sure that the stool is softened and the bowel can also work its
miracles . . .
Anyse
Thanks for stepping out of the line-up, I thought I was the only one who LMAhad to work miracles in order to be ‘normal’.
Hi, all:
Yes, this can be a BIG problem, and the pain I get from it has been bad enough to lead to unconsciousness (even prior to the CP incidents). I take 4 stool softeners every night and every 2-3 days take 4 Senna tabs and 4 Bisacodyl tabs-- and this in addition to Lactulose (osmotic agent, like Miralax, which also doesn’t seem to do much at all) up to 3 times a day and then I take very horrible saline laxatives like Magesium Citrate orally every few days when I can get it down-- it’s pretty gross. Even given all that-- Nothing is working at all. My abdomen is bloated and completely rigid and now they’re saying I’ll very likely have to either go into the hospital and/or under anesthesia and get manually emptied–either through force or other things that they can only do through a hospital. I know I’m at risk for perforating when it gets this bad, especially with my Classical EDS-- a genetic syndrome that causes among other things easy tissue tearing and poor healing. I also use Enemeez (small but very strong enemas for spinal cord injuries that require a ‘bowel routine’), and even this almost never helps at all-- or barely if anything.
I’m glad you guys are talking about this. It can be bad, scary, and even fatal. I thought most people w/CP had diarrhea, not constipation, so I’m glad we’ve opened up this discussion. I’d sure take any advice, because as many of you already know, this pain on top of CP pain is almost unbearable.
I just think I’m way beyond being fearful of another admission for anything. So far 16 admissions has only led to the CP itself, a lot of pain and sickness, and a punctured lung. I really don’t even know how to consider going to a hospital for anything anymore. That’s a scary place to be. I wish there were some sort of solution or idea, because at this point all of my docs-- from GI to GP to pain mgmt. all are completely clueless as to what else to try and this makes it hard to keep believing the CP and all that comes with it will go away one day. The only other suggestion I got today was to go on “elemental formulas” such as Optimental or Peptamen for nutrition. Does anyone have any experience with this at all? I’ve never heard anyone talk about it.
I don’t say this very much, but I’m feeling pretty scared at this point and just can’t stand any more pain. I have no idea what’s causing the flares anymore or what else to do. I’ll try to set up the celiac block by EUS, but that’s only temporary either way. I feel kind of lost-- and I don’t usually feel this way-- even after two years and 16 surgeries… Guess even I have limits to how much I can handle. I sure hope it gets back under control (relatively, anyway) soon!
Thinking of everyone and sending hugs and love,
Lisa
Vivonex is also an elemental option I lived on it for over a year. I know how painful and frustrating this can be, Hang in there.
Kevin
So far I have only had the diarrhea (steatorrhea). From what I have read and understand, the hardcore pain meds (read narcotics) we tend to be on often are the cause of constipation. This is because one of the effects of narcotics is to slow down the whole digestive system- from the stomach to the intestine. As the waste is retained longer in the intestines, more water is extracted from the waste leading to constipation. I have noticed that since I have been on long-acting morphine, my steatorrhea has significantly decreased.
Hi Lisa,
I take Peptamen 1.5 through my J-tube for my nutrition. I’ve lost too much weight, I’m now 75 pounds. It really scared me so much because the recent hospitalization for about a week caused this. I lost little bit when I was back from India and I was trying to keep the nutrition keep going so that I can gain some weight but the pain was so bad I couldn’t even tolerate those feedings. The feedings really help me to maintain my weight most of the time unless I don’t take care of myself and don’t hook up the tube feedings for hours some days then I start losing weight and feel weak. Then I go back to doing them regularly. The doctors want me to increase the rate of tube feedings per hr to more so that I gain weight soon and if I gain couple more pounds more than I’m supposed to have it might help to tolerate the pain better. But whenever I tried to increase the rate I get pain, they don’t understand. My visiting nurse said, when you are doing continuously do at the rate what you feel comfortable. But right now I’m trying to go up slowly to every few days. I don’t believe in puffing up within few days. And I was always skinny and if I get to 90 pounds also I feel a lot better and have strength to do all the things I want to do. At that weight I look very healthy and I can tolerate pain better than when I lose weight. I’m anemic also now. I’m waiting for my pain to get to tolerating level and then I can go to get my Iron treatments for 8 to 10 weeks.
Now I get feedings all the time 24 hrs and I am hoping to gain some weight every week, because I feel so weak and after a long time I feel so down and keep crying all the time. This time I’m feeling helpless and hopeless. I’m not able to pull myself together because not having physical strength can effect the emotional strength. So, my therapist said, feeling homesick and my trip which brought back all the memories of healthy life and how I grew up, used to do things without depending on anyone etc are all natural feelings and I shouldn’t fight them out. When I’m alone I feel like now I’m just a sick person and going back to the beginning asking questions like ‘Why me, Why this disease, What have I done?’ etc.
I think sometime or other all Chronic patients feel terrible, horrible and very depressed. But if we take it easy and try to concentrate on nutrition and diverting our minds from our sickness then we can get ourselves from that terrible feeling. I can understand what you are going through dear friend. Let the tears come out and whatever you are feeling is natural for anyone in your situation to have. I know you are a strong person and if you feel sometimes weak and helpless there is nothing wrong with it. * Don’t you worry about how you are feeling. Let the feelings flow as they want to. When your pain is better and you feel physically little bit stronger you feel much better. *
I use stool softeners along with a laxative every night and when I take breakthrough medication I try to increase them by taking in the early morning too. I observed that when I do feedings well and also try to eat or drink the things I usually do regularly then it is better. Now I’m making soups myself with all kinds of vegetables, whatever I can find in the refrigerator and having it couple of times. I’m also drinking coconut water which I used to do in India and now found out that they are available in the packs which come from Brazil. We order in the Indian stores the Coconut water without pulp. Just plain water is full of Potassium and it is equivalent to one I.V. bag. I feel immediately better withing 10 minutes if I feel dizzy or get cramps or something like that. If anyone wants to try this you can search on Google just typing ‘Coconut Water’, you’ll get all the information about it. I’m also going to add to my food Egg Whites. So, every day along with tube feedings of Peptamen I eat low fat Smart Ones Cheese Cake twice, I have tea with crackers that I can tolerate. Since I started doing soups, it’s not even a week my constipation problem seems not that bad.
I hope I have given enough information about Peptamen and some tips to try for the constipation problem. I read somewhere that CP patients are not supposed to take too many laxatives sometimes it can also cause an attack. But at the same time if we don’t take them constipation gets very bad and the doctors say if the bowels don’t move at least every few days (because we take lot of pain medications) then it will back up and cause an attack. So, we are stuck with this problem either way.
I think I wrote too much and I can feel it because of weakness my back hurts, my head hurts, my neck hurts etc. I can’t wait to gain weight and start feeling little better.
*Good luck and don’t you worry about how you are feeling. We are all sailing in the same boat. But you have more things on your plate that’s why you feel like that. You should not be hard on yourself. Just let all the feelings get out. If you want to cry, it’s ok, if you want scream and yell, it’s ok. I know when you get some strength you’ll feel better. *
Lots of love and hugs.
Durga.
Dear Lisa:
I hope you feel better soon. Hang in there. We all know the pain you are feeling. It’s the worst and it is scary. Hopefully the celiac block will give you some relief.
Take care. EllenC
Dear Durga:
I am sorry that you were in the hospital again and that you have lost so much weight. That is scary and it is hard to stay strong when you are feeling so weak. I am down to 110 lbs. which for me is thin. I am usually about 125 or more. I can’t imagine weighing 75. You must be so tiny. I will pray for you to gain weight and for your energy to return.
You and Lisa have been through a lot lately. My biggest problems lately are the constipation and very bad gas. I think the Creon 20 I take may be causing the gas. On the other forum people were writing about Ultrase (?) I think that’s how it’s spelled. It’s a different enzyme. What enzymes do you take and what do the others who are on this forum take. I see my GI next month and I want him to give me something new. I used to use Pangestyme, but that did not work as well as the Creon. Durga, I hope you
feel better soon.
Take care. EllenC
Wow…
I’m shocked that some of you guys use the elemental stuff-- I looked up both you guys mentioned and will try to get some more info pretty quickly. Do you guys get it through Medicare or another insurance? I have VA and Medicare, but I’m not sure where to start- it looks tricky to start getting it. I’m guessing the doc only wants me to use the oral form from what he was saying (for now) but am a little lost at this point.
I sure wish you all the best-- and Durga, Ellen, Kevin and Warren-- thanks for the extra support… I sure needed it! I hope you can all keep that weight on and stay healthy. This disease sucks more and more each day I learn more or have more trouble and even worse-- find out that so many of you have the same stories and problems.
Many hugs, love, thanks, and some pain-free times,
Lisa
Hi Ellen,
Thanks for your mail. Yes, it’s very scary for me to weight that low.
That’s why I’m concentrating on continuous tube feedings and trying to increase the rate. Also trying to add some things slowly so that I’ll get some vitamins like vegetable soups, eat a small or half a banana, Egg whites etc. I’m trying my best because it does definitely effect my emotional strength. I feel very weak both physically and emotionally. I can’t wait to gain weight and get some strength so that I don’t feel so down and helpless everyday.
I take Viokase enzymes and I don’t have any gas problem. You can ask your GI doctor what other enzymes are there and maybe he’ll prescribe others which cannot cause gas.
Hope you have pain free night!
Lots of love and hugs,
Durga.
Hi, Ellen–
Like Durga, I’m now on Viokase 16 with meals and snacks. I had only taken Creon briefly, but it gave me bad abdominal cramps, so I stopped by the second dose. I had been on Pancrelip, but my supplying pharmacy (through the Dept. of Veterans Affairs) switched it to Viokase-- no idea why-- likely their cost-- and it seems to work better. At least it doesn’t seem to make it worse.
Hope this helps and thanks for your note–
Hugs and best wishes,
Lisa
I have a question about what Viokase enzymes are and what they do??? I have been on pangestmy enzymes for 3-4 years and that helps the pancreas digest my foods. I too have been battling with a weight issue and stay away from fatty foods and don’t eat out at all. I too suffer from constipation, I just told my husband I needed to do something it’s been a week!!! that makes me crabby alone. I finally go to the oncologist tomorrow so hopefully he will have answers for me about my low platelets!!!
Hope your having a pain free day, god bless all~~~~~~Barb 
Hey, Barb, pangestyme, Viokase, and Ultrase are all similar. The main differences are in the amounts of enzymes and which ones are higher. For me, pangestyme worked the least, Viokase was decent, and Ultrase 20 works the best. Unfortunately, Ultrase 20 is still not generic so… I don’t have any Viokase containers handy but here is the breakdown of the Ultrase 20:
Lipase- 20,000 USP units
Amylase- 65,000 USP units
Protease- 65,000 USP units
In biology, most enzymes end in an “-ase”. Lipase is used for digesting lipids (fats). Amylase is used for digesting starches and protease is used for digesting protein. Digesting is probably misleading because it is more accurate to say hydrolysis. The enzymes are breaking down the polymers into their constituent parts so the cells can then use the components. Lipids are broken down into fatty acids, starches into glucose molecules (the best energy source for cells), and proteins into amino acids.
I take VIOKASE 16 - WAY TOO many tablets daily… Each tablet contains: Lipase 16,000 USP units Protease 60,000 USP units Amylase 60,000 USP units The way the VIOKASE was explained to me was that by taking the pancreatic enzymes, the enzymes needed that are usually produced by the pancreas are already there - thus giving your overworked, tired, sick pancreas a break and letting it rest and heal. That may be extremely oversimplified but it works for me ! I too am very happy to see this discussion on constipation. I have had it all my life but it has become significantly worse since my chronic pancreatitis diagnosis, spincterotomy, and stent placement. I struggle with it every single day. I too have episodes that are the most painful thing I have ever experienced. My doctors and I have yet to find a medication or diet change solution to this so each and every post in the conversation has given me additional information and possible avenues to persue…ALL VERY MUCH appreciated. Sherry
Oh my Thank You Thank You, I just asked durga what Viokase was and low and behold you answered my
questions. I told her that I take Pangestemy for enzymes and just had words with my insurance because they use to pay all but 10.-- and now they are charging me 45.–…I would like to ask if your insurance pays for Viokase???
Again thank you so much for your knowelege!!!
Mrs. Barb
Hi Mrs. Barb.
I take Viokase enzymes and the insurance do pay for my enzymes. When I went to India we ordered more just as a precaution and everything was covered by Insurance. We have Blue Cross Insurance. They did not pay for the extra pain medication we took as a precaution measure in case if I get sick and can’t travel we need to have some extra medication at hand. When we decided that we want to go to India since then I started writing requesting for just one week extra medication but we didn’t get any response. We were worried because they allow only 4 weeks of pain medication so we thought if Insurance doesn’t pay maybe the doctors will also not write prescriptions for extra medication even if we were willing to pay from our hand. I wrote letter to GI doctor explaining the situation and asked him whether he’ll write the prescription in case the Pain Clinic doctors won’t write. But fortunately I got a new doctor that day itself and he was so nice.(My doctor was gone and I was seen by different doctors every month and I missed my doctor so much. He was compassionate and very understanding. The Doctor who saw me just before we went to India came as the new director of the Pain Clinic in place of my doctor. I thought I was lucky.) He wrote prescriptions, gave his card saying he was in India just two weeks ago attending some hospitals for some conferences and he knows some hospitals and good doctors. If we need any help in the airports he told us to call him. He said, I can write prescription but I’m not sure whether the Insurance will pay then we said, we are prepared to pay. That’s when the savings we had from selling bead work came in handy and I was happy that I contributed in paying for my medication. Even though it was lot my husband doesn’t have to pay. Isn’t that great.
Because I’m not feeling that good, I’m not sure how many shows I’ll be able to do, I’m totally depending on the website orders now. For the past two days I have been sending the information requesting to order and forward to their friends who are interested to buy the handmade stuff.
I’m sorry I just got carried away. Your insurance should be able to pay for the enzymes. Try to find out. The Insurance companies always try togive hard time to patients. They never make it easy for the patients who are already suffering and don’t deserve that kind of treatment. We get calls from the hospitals asking to pay the bills which insurance hasn’t paid. If I answer the phone they ask me, how are you going to pay the bill? Are you going to send the check or are you going to pay through card now? That minute no matter how big is the amount we have to pay immediately. I used to get mad and say we’ll pay as soon as possible controlling myself. Then they’ll say when and what time. I say I can’t say like that. First we have to find out why did the insurance didn’t pay the bill, if they can pay we’ll communicate with them and let you know. Or my husband has agreement of a system to pay the bills every month little bit because it’s hard to pay at once. They talk so rude. Then I start yelling at them saying, what do you think because we have to pay few hundred dollars we will run away from the country.
We have two kids and I’m Chronic patient need to have some emergency money and we just can’t pay the minute you ask. They get mad. They say if you don’t pay in so many days or month you’ll get notice and they’ll hung up. They really make me mad. My husband talked to them and told them not to call at home. If there are any bills we need to pay either send the bill or call him and we’ll figure it out how to pay. Sometimes they leave the messages. I don’t want to raise my blood pressure arguing with them. We have been here for 12 years and I’m sick for the past nine yrs very bad and went through so many procedures, months of hospitalizations, major surgeries and never failed to pay the co-pays, deductibles, and the bills insurance didn’t pay giving some reasons.
If anyone wants to talk about the insurance problems my whining might help.
Hope you feel better and get the platelets problem under control soon.
Love,
Durga.
Yes, the constipation was something I was not prepared for. Prior to illness, I never gave my bowels a thought. To me constipation was simply when you had to push a bit harder. I never realized it could get backed up so far up the system that there is no urge at all. I have had some nightmare problems which still haunt me at times.
I take colace every day. I am still technically constipated but at least I go.
I have tried miralax and have heard good things. It is gentle, no cramping. I also eat a prune now and again.
Good luck to all on this matter. Thanks for opening the discussion.