This topic contains 17 replies, has 9 voices, and was last updated by  Brittany Foster 2 weeks, 2 days ago.

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  • #15586
     Brittany Foster 
    Keymaster

    Unfortunately, the past few months (since right before Thanksgiving) I have been hospitalized for 10 day stays in November, December, and now coming to an end of a 10 day stay in January. My GI system has been slowing down because of the poor blood flow and circulation in my body. Leading up to the hospital stays, I had changes in bowel habits switching from constipation to diarrhea, nausea, vomiting after eating, and terrible stomach pains with eating.

    I have been diagnosed with gastroparesis which is delayed stomach emptying, gastric reflux, and an aortic arch abnormality where the arch presses on my esophagus.

    Has anyone else been struggling with GI issues since diagnosis of PH? Have your doctors thought it is connected to your PH in any way? Do your medications ever cause GI symptoms?

  • #15591
     Joanne Sperando 
    Participant

    Gut issues started within the first year of diagnosis. My PH doctor advised me to take immodium and she and I both agreed that my problems were side effects of the tremendous vaso-dilation action of the PH drugs. As PH drugs were added to my regime, my gut got worse and worse. I started out with a diagnosis of IBS, which progressed to Ulcerative Colitis. I must now take an infusion to help manage my UC and gut issues rule my life. I want the drug companies out there to work on meds that don’t destroy the gut, that work only by vaso-dilation, which in turn, creates many side effects.

    • #15594
       Brittany Foster 
      Keymaster

      Joanne,
      I know how frustrating it is to have the GI system be impacted in this way. I don’t have ulcerative colitis but I have had an awful time the past year with cdiff colitis infection. I have such a high respect for those who battle with a terrible gut. The gut really has a way of making the rest of my body feel so crappy! Do you see a GI doctor that works well with your PH team? I’m so thankful that mine is such a good adcocate for me.

  • #15592
     Mary 
    Participant

    My issues have not been as serious but some are very similar to yours. My PAH is at about 30. Nausea, diarrhea, and abdominal pain are common. The only way I have found to minimize these symptoms is by continuously adapting my diet. For me, the following works:

    I cannot consume more than 50 grams of protein (as protein dehydrates me) unless I get it in the form of whey protein or soft cheese (such as gouda). I have tried several non-athlete whey (like Vital Whey) but have discovered that the one that causes the least problem is Jay Robb’s whey protein.

    I cannot eat more than 60-70 grams of carbs at any one meal and no more than 3 meals per day. The smallest meal is the first and is between 8 and 9am, I have about 30 grams (including 14 grams of fat….the fat seems to be critical). About 6 hours later (about 2-3pm), I eat my biggest meal. This will have 25-30 grams of protein and about 75 grams of carbs. I always end this meal with 3 small pieces of old-fashioned peppermint candy (high in sugar and melts in mouth) which do not count towards my carb grams. (As strange as it might seem, the peppermint candies (about 15 grams of carbs total) seem to prevent nausea. (BTW…peppermint is an herb used to soothe the digesting tract). I have my final meal about 7 hours later (about 10pm). I consume about 2 ounces of a soft cheese (gouda works best for me) with some potato chips (for the salt!!!). On this program, I have minimal diarrhea, no nausea, and minimal abdominal pain. I also have no bloating or edema.

    The minimizing of salt actually increases my problems. If I eat greens, I only compound the problem since greens tend to decrease digestive enzymes. Adding salted potato chips (I use Kettle non-GMO brand) actually seems to help speed up digestion (could be salt is needed for digestion) and correct whatever is causing the problem. As soon as I eliminate the potato chips, the abdominal pain returns. When I cannot consume potato chips, I will have 4 oz of water with 1 TBSP of raw, natural apple cider vinegar and a little stevia. While this minimizes the abdominal pain, it does not eliminate it. The potato chips (Potatoes are high in potassium.) combined with salt seems to be what is needed. I have tried simply eating potatoes (adding salt) but it does not work as well as about 2 ounces of potato chips….go figure!

    I know this goes contrary to what many MDs will say (the salt in potato chips). Therefore, this may be peculiar to me. I should state that I am 72 years old. My PAH is due to formaldehyde poisoning which occurred 15 years ago (and which was suppose to have killed me). The formaldehyde damaged by aveoli which is what is causing the PAH. Also, I do not know if this will still work as my PH increases (hopefully very slowly). I state this since my solution might not work for someone whose PH has a different cause or is higher than mine.

    Finally, note that I must have at least 6 and PREFERABLY 7 hour between EVERY meal! Even a small snack can upset this balance!

    I hope you can find a solution that works for you.

    Mary

    • #15596
       Brittany Foster 
      Keymaster

      Wow Mary,
      You sound very educated in the nutrition that you are putting into your body and I hope to learn to adapt to what works for me regarding foods that I’m eating and what doesn’t. Smaller meals every few hours during the day has been helpful for me but sometimes I feel like my stomach doesn’t have enough room at the end of the day to take in the calories i need. Since being in the hospital I have had a hard time digesting greens and vegetables and I easily throw those up. It might be better for me to get my fruits and veggies blended into a smoothie or something that’s easier to get down (and hopefully stay down!) I’m glad that you were able to figure out what worked for you. Did you figure this out on your own or did you have the help of a nutritionist? I saw a nutritionist while at the hospital for the tube feeds but may have to start thinking about seeing one outside the hospital too in order to make sure I’m not losing any more than I have.

  • #15599
     Dori Herrick 
    Blocked

    Thank you for sharing this information. Although I have multiple illnesses and medications which contribute to GI issues, I was not aware until now that PH itself could be a contributing factor.

    • #15601
       Brittany Foster 
      Keymaster

      My GI doctor is thinking a lot of my slow motility and stomach/intestinal problems stems from circulation and blood flow disruptions. If the PH is effecting the heart and circulatory system then it makes sense that it would contribute to how the organs and systems function in the body. Definitely something to bring up to the doctor and maybe the GI docs and pulmonary team can work together to find the best treatment options for you.

  • #15673
     Jeri 
    Participant

    Prior to my cteph diagnosis I was having GI issues but they were very manageable. In January 2015 with my diagnosis I also started adempas drug trial 6 weeks later..within a few days the GI issues , heartburn,reflux, cramping, bloating,
    Nausea, constipation, and above all severe pain.. 2 years ago I was diagnosed with gastroparesis, given medication and changed my diet completely to adhere to the recommendations of my physician.. I have been having flare-ups off and on the past 2 years, which I could usually managed by just going back to a straight liquid diet. In October the flare-up started coming much more frequently, along with fevers, and the side effects and complications seem to be escalating at an alarming rate. And December my GI doctor decided to do another EGD and I was on clear liquids for 30 hours prior..I still had massive amounts of food in my stomach undigested and in my small intestine.. the surgeon told me that my gastroparesis has reached a critical stage and they needed to had a surgical intervention and possibly putting a pacemaker in my stomach, or removing my stomach and doing a gastroplasty. Theysent me to my p h cardiologist and he will not agree to the pacemaker in my stomach,…so no I’m waiting for Mayo Clinic to call me to have my stomach removed and leave me with a small pouch directly hooked up to my small intestine.. I am nervous about the procedure, I’m nervous about the amount of money it’s going to take on my disability budget to get there, (Mayo Clinic) and have the testing done.. has anybody else experienced these dramatic symptoms along with taking their pH meds?I’m another support groups and this just seems to be a snowballing effect of the pH meds and I don’t know why nobody’s addressing this serious health issue.. also for me my CPAP at night just exacerbates my reflux and heartburn..

  • #16351
     Brittany Foster 
    Keymaster

    I’m sorry that you are going through so much right now. I can’t even imagine everything that you have on your plate and being told that you have to get your stomach removed and major surgery. I have only heard amazing things about the Mayo Clinic. When is your appointment to see them and are they also talking with your PH team? I would definitely suggest having your PH group reach out and give them as many notes as they can before you are seen by them just so they can assess your risks and everything for surgery. Let us know how it goes and when you are planning on going to the Mayo Clinic to get this! Thinking of you .

  • #16356
     Joanne Sperando 
    Participant

    Brittany, my GI doctor understands my meds issue and works with my PH doctor. That’s key! I’m really fortunate to have found a doctor willing to do that.

    • #16357
       Brittany Foster 
      Keymaster

      Hi Joanne,
      That’s so true ! It really is key when they look at you as a whole person and work well with your other care team too. I’m so fortunate that mine is such a good advocate for me and goes above and beyond what I ever could imagine. That has been what has been literally saving me through all this added physical problems caused by the GI issues that are related to my heart condition. Hoping to get a date for my surgery soon so I can finally have this behind me.

  • #16625
     Libby 
    Participant

    I have always had issues with bloating, often been asked if I am pregnant despite being a very petite, slim person. Just in the last year, being constipated. I don’t know if it’s related or not, but I take stool softener. I eat quite healthy and drink tons of coffee (which used to work as a laxative for me, but not anymore!) So noT sure what the deal is.

    • #16627
       Kathleen Sheffer 
      Keymaster

      Sorry to hear that, Libby. I’ve had the same symptoms from my gastroparesis and it’s unpleasant. My mom recently started on a low FODMAP diet because she was having similar issues. The diet has made a huge difference for her. Have you talked to your doctor about these issues? What does he or she say?

    • #16631
       Brittany Foster 
      Keymaster

      Libby,
      constipation is so unpleasant. I have had chronic constipation since I was a baby and have been dependent on laxatives an stool softeners for as long as I can remember. When I was put on certain medications though I started noticing that I had to take more of the laxatives in order to not get constipated. The medications started to slow down my GI tract. As Kathleen asked, have you mentioned this to your doctor? I would also ask the pharmacist if it could be related to any of the medications that you’re on and see what they say (not that we can always change the meds we are taking, but at least it may give you some hint of an explanation).

  • #17538
     Sherry Berry 
    Participant

    I have been having these same problems, bloating, pain, severe indigestion, a nausea in the morning after wearing my Bipap. I sometimes wake up during the night with indigestion. I take nexium but it doesn’t even phase it. It could be gastroparesis I think I’ll talk to one of my doctor’s next week to see if I should see a GI doctor. Thank you for the information.

    • #17543
       Brittany Foster 
      Keymaster

      Glad this post helped you to recognize and pay attention to these symptoms you’re experiencing. I know that my GI doctor attributes a lot of my slower motility to my lack of good blood flow to my GI tract. I also have noticed in the past that sometimes I woke up feeling pains in my stomach after bipap. Turns out that my doctors attributed this to an increase in reflux with wearing the mask. Now. I wear it more during the day when I’m up and am able to control my level of comfort and be aware of what’s going on. I have central respiratory conditions so my breathing is also effected during my wakefulness too.

  • #17539
     Colleen Steele 
    Keymaster

    My son has taken stool softeners and reflux medication and sometimes laxatives both when he had PH and post transplant. For him medication has played a huge part in his GI problems. As other’s have mentioned, definitely discuss with your doctor. As my son’s PH progressed heart failure also contributed to these symptoms, especially the nausea and vomiting. I do think stomach problems are very common among PH patients and it is important that your doctor keeps a check on it and treats accordingly.

    • #17544
       Brittany Foster 
      Keymaster

      I agree Colleen! This is why it’s so important to make sure our care team is involved in ALL areas of the body that could me impacted by PH and other diseases like heart disease. I’m glad that I have such a strong primary care doctor who is a good advocate for my health and also is great as making sure my different doctors are in contact with one another. In my opinion they all should be working TOGETHER! Communication is key!

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