Secondary CP problems

Posted , 5 users are following.

I have had CP since 2012, also diagnosed with splenic vein thrombosis in 2013.  As of recently, I have avoided hospitalization because I am able to assume a liquid diet and take pain meds as needed.  My concern is that I often have lower abdominal pain, almost bowel related, that is as equally painful as CP.  I have seen my GP and gastoenterologist for this often because my weight is diminishing, and my pain is daily.  My question is related to compications caused by CP.  Is there something else they should be looking for besides constantly checking blood and doing abdominal US?

0 likes, 15 replies

Report / Delete

15 Replies

  • Posted

    Hello again,

    Thank you for sharing information with me regarding the smoking relation to CP. I read your other post and I was wondering if your secondary problem splenic vein thrombosis is related to the CP. Does that mean you have a lot of unsafe veins in your spleen, and if so is this from drinking alcohol? My father died of cirrosis of the liver, but before that happened he had already stopped the drinking for more than twenty years after his diagnosis. He fell off the roof one day, broke three ribs and ruptured his spleen. He spent well over a month in the hospital. After he was released to come home, he vomitted a large amount of blood and nearly died. It came up in the form of a very large bloodclot. I don't know whether the blood came from the ruptured spleen or if he had a bleeding ulcer like the doctor's said. What would be your take on this? That's only if you do not mind me asking. I also wonder what US stands for at the end of your last question.

    Report / Delete Reply
  • Posted

    I have a hereditary condition called factor 5 leiden, which makes me prone to clotting.  From my research, , splenic vein thrombosis is also related to CP, so the two probably go hand in hand, while the hereditary condition just made me more succeptible.  I am on'y 37, freshly 35 at diagnosis, and I don't drink heavily, but I am a smoker, especially when I feel okay, but am afraid to eat, because eating often causes a lot of pain.  My liver functions always come back fine, though there have been at least 8 instances of elevated amylase and lipase.  US is ultrasound, sorry I am from the US (United States)  The reason I mention smoking is because I had a stent placed in June, and the Dr noticed a lot of progressive damage, in spite of not drinking.  I am not a heavy smoker, but I do enjoy something especially when I can't eat.  I often only take two drags, and save it.
    Report / Delete Reply
    • Posted

      Kerry05339, please try to give up, my friend Aland in his mid 70's been smoking from 8years of age recently stopped, here in the UK after they found Cancer in his right lung & cut it out, so he moved over to inhaling 'Vapour,' & was able to give up tobacco smoking completely & others have given up Vapor smoking after several months, theirs also something called Zyban but you need to run it by your doctor before using it!  please get checked out with Ultrasound & CT Scans/blood Test about your abdominal pain

      Hope all goes well... :-)

      Report / Delete Reply
  • Posted

    Oh I see. Thank you for taking time out to explain this to me. You are awfully young to have so much on you to deal with and I am sorry to you for that. I didn't know that CP or your secondary problem could be heriditary. So you know your weight loss is related to not eating regularly? What if you eat the low fat diet they posted about in the other forums, and smaller portions? Does this make a difference at all? Does the pain only come after a meal? If so, what is the duration? Do it cause you to become immobile?
    Report / Delete Reply
  • Posted

    0 percent of the time, I gamble if I am feeling okay.  It is very difficult to maintain the diet, eapecially when I like flavor, and I have a family I am also cooking for.  Many times, I cook them dinner, and take a small bite just because I want to know it tastes well, and then feel pain.  Yes, I ALWAYS have to do the smaller meals, as soon as digestion begins, I feel like I ate a holiday meal, even if it was a half a salad plate.  I am 5' 3", 98 lbs, down 15 since diagnosis.  It varies, but using skim milk, I have tried making myself milkshakes with yogurt, they say the probiotics may help..  also take a digestive enzyme, Creon, but do not notice a significance.

     

    Report / Delete Reply
  • Posted

    Sorry, I meant to say 10 percent of the time I gamble, hoping to taste delicious food with no pain.

     

    Report / Delete Reply
  • Posted

    Duration can be hours to days.  I have pain medication to take as needed, usually helps within an hour.
    Report / Delete Reply
  • Posted

    And yes, until pain lets up, I cannot think about anything besides the pain.  I have had two unmedicated c-sections.  The pain does not compare.

     

    Report / Delete Reply
  • Posted

    Which pain meds do you take Kerry? I also get pain from tummy upsets which can be as severe as pancreas pain! I also have diabetes and that can cause your whole digestive system to slow down a great deal which is called delayed gastric emptying. High amounts of opiate pain relief can cause severe constipation which if left too long, can cause excruciating pain and in very severe cases, cause you to vomit faeces! I am sorry for the not so nice descriptions but I feel that it is important that these things are talked about openly as they are not only very painful and upsetting but also potentially dangerous. 

    When I have to take large doses of morphine, I also take senna and lactulose, which helps you go to the toilet. I also have to have enemas to hand in case I get very blocked up. Sometimes, using an enema is the only way to stop the pain. I am also writing a food diary as I need to try and work out which types of food are upsetting my stomach the most. I didn't get many problems with that side of things until quite recently but I have also lost lots of weight (I am now just over 8 stone and 6 foot 2 inches tall!) I used to be nearly 13 stone a few years ago. 

    Do you take Creon whenever you eat, Kerry? Sorry about the long reply! 

    Regards, 

    Pete 

    Report / Delete Reply
  • Posted

    I too get lower abdominal pain. Along with constant under ribcage and back pain and pain in chest. Just a few ideas for you. I make a soup called Beiler broth ( from a nutritionally minded Dr  back in the 60's who was way ahead of his time).. It is zucchini, green beans, celery, parsley, and I add garlic and onion (but you dont have to)..and himalayan pink salt.  I never measure, but theres about twice as much zuc as anything else. Put in a large pot (minus the parlsey) and add water almost to cover veggies. Cook till almost tender, but dont overcook. Blend all with fresh uncooked parsley. Blend to your liking (add less water if you like it thick).. I blend really well.. I love this soup. We call it green soup. I can eat this for days, and its the ONLY thing that I feel I can eat w/o too much pain. I freeze after it cools so its always fresh. I would try this and nothing else for a few days then introduce food. I can NOT eat any dairy, even yogurt. But probiotics are good. Get tested for parasites, or research, and  take an anti parasite product (health food store). I would rec a liquid B complex, and liquid minerals.

    Ok having said that, have you ever tried Xanax?

    Its the only thing that I notice a significant difference with.. I take one half of the lowest does (2.5) just about 3 times a week, cause I am worried that it will stop working. I look so forward to the little bit of relief it gives me. I take in eve. I seem to be able to eat more than usual, and SLEEP, and wake up in less pain. Probably has to do with a sphincter issue,and relaxing something in there. Who knows.

    Carry on all you CP people!!! Isn't this fun? Nobody gets it huh?

    blessings to all of you.

    Report / Delete Reply
    • Posted

      I also found taking garlic as being good and taking away the pain & sticking too a mainly vegetarian diet... & using the blender to make soups using fresh organic produce... Tolle.  The doctors said keep off cheese and fats, so I did & improved but stopped taking all my medication, thinking I was healed but the pain, stool blockage came back again, with vengence so, you can reduce/limit medication but not stop it completely, at least not until they cut the Tumour out from the Pancreas!
      Report / Delete Reply
  • Posted

    Pete, I take Percocet (oxycodone).  I do take the Creon with meals and snacks but I have not noticed that it makes a difference.  I also cannot remember when the last time a meal was not the size of a snack, or a snack was not not just simply a bite or taste of something.  I am afraid to eat more.
    Report / Delete Reply
    • Posted

      Do you still get upset stomachs even whilst taking Creon? You may need to up the dose if so. I take 40,000 which are the big tablets. I used to take 3 of the 10s but put it up a year or so ago. I have tried oxycodone but they don't work as well as the morphine for me. It suits people differently I guess. Have you had any complications with your pancreatitis? I had a pseudo-cyst which had to be removed by surgery about twelve years ago. I was in hospital for nearly two months recovering from that but apparently, it can be done by keyhole surgery nowadays thank goodness! I am in quite alot of pain today and it is very tiring. I can't lie down at all when it flares up and so I end up not going to bed at night. Do you find yourself leaning forward to try and get some relief from the pain?! I do for hours and hours but it just makes my back really painful also then! 

      It is a very hard illness to cope with and it has left me depressed and needing to take anti depressants nowadays. I don't have as many acute attacks as I used to but I still get quite regular pain from the other aspect of it with the digestion side of things. When I end up in hospital, I usually have problems with being given adequate pain relief. Have you experienced anything like that? Because I have to take 240mg zomorph daily, the normal dose of IV morphine that is given to patients doesn't even touch my pain but they either don't listen to me when I try to explain this to them or they hear me but are not willing to give me anymore due to health and safety worries and their worrying that it could stop me breathing etc! That makes me so mad because I know that nothing like that would happen to me and that the real reason is that they would have to leave a member of staff with me if they were to give me extra pain relief, so that my blood pressure could be checked every five minutes and they simply cannot spare a staff member to be stuck with one patient for so long! Whilst having a free health service in the UK is good, the quality and service you get nowadays is very poor unfortunately. What with the massive immigration figures and all, it simply cannot cope with the extra patients it has to contend with each day. Having said that, I would hate to have pancreatitis in the US and not be able to afford medical insurance. That would be so scary! 

      Hope I have been of some help, Kerry 😊

      Regards, 

      Pete 

      Report / Delete Reply
    • Posted

      i agree with you about the run-down & burdening of the NHS Pete but, it's the 3main Party's fault & the only way looks like UKIP.  Try to reduce the antidepressants please Pete as, after a while the human body becomes immune to these & you'll need stronger & stronger drugs, there was comments on Chanel 5 programme about the last days of Elvis Presley, which highlighted this as the probable cause the killed Elvis as he was having to take stronger & stronger medication ('uppers & downners') they said! 

      Did the operate on your Pancreas Pete, if so how much of it did they remove plse?

      Report / Delete Reply
  • Posted

    Kerry sorry forgot, regarding food, little & often & I & my friends in Bristol, England been taken to Juice-ing & found Nutri Bullet to be the best to breakdown seeds.  Just Google & you'll find lots of help out there & what helps, works & what does not.. :-)
    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up