Need help with gut issues - feeling discouraged.
I know this too will pass, but I am struggling and looking for anyone with similar symptoms and/or maybe some tips to offer.
I have MAC/Bronchiectasis. Bronch is mild to moderate, but hasn't really changed much in over 4 years. I do faithful airway clearance along with my 7% saline, never been on the big 3. Take only NAC, famotidine 10mg 2x/day, Ion gut health probiotic, and some Pepsin GI. I have always had some IBS as well as GERD, but this seems different. I have been dealing with pressure in my upper center and left gut/stomach. It is very high and feels like someone has a fist pressed into my stomach & diaphragm. It is painful and exhausting pressure/crampy. When it is really bad I get overall muscle weakness & fatigue, sob, increased pulse rate, unable to eat, and frequent stools (sorry for the oversharing). Overall just feel weak & I told my husband I feel like I'm gonna die (ok, I MIGHT be a little overly dramatic 😉 ). This last severe bout, I also noticed it was at the same time as I was having more green & yellow sputum and more volume of sputum. My diet is SUPER restricted after having suffered bouts of this for the last 4 years and thinking it is food caused. I don't do any wheat, dairy (except for some hard cheese - zero sugar grams), gluten, sweets, mostly a low FODMAP. Interestingly, this all started at the same time as when I was finally diagnosed with MAC/Bronch and was having some hemoptysis. I have had full blood work twice for these issues (once just last week), and everything comes back totally "normal" (except I have high bilirubin from Gilbert's disease, which is a non-issue), and this last time I had low glucose, probably because I hadn't eaten much for a couple of days.
Questions: I know the gut-lung axis goes both ways - gut can affect lungs, lungs can affect gut. Do any of you feel gut symptoms get exacerbated with flare-ups of MAC/bronchiectasis? I don't think I really know what an "exacerbation" feels like for me - sometimes I just feel worse than others, and it ALWAYS seems to include my stupid gut issues. Could they be connected? My pulmo doc just has zero suggestions, and doesn't think there is a connection. At these times, should I be having a sputum sample checked? Any shared symptoms, suggestions, bad jokes......anything appreciated!! Thanks so much!
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
This might sound silly but I'm getting borderline emotional with all of these helpful suggestions that I've been begging the doctors for 2 years about. Thank you so much for all your time and insight on this! I'm excited that there are more outlets for me to inquire; they way medical professionals were speaking to me, made it sound like I was coming to an end on finding a solution.
I used to love salads and these little probiotic yogurts (I forget what they're called), but I noticed how much burning I'd feel from lettuces and spinach. I even found tons of discomfort in apples- that was my favorite snack with peanut butter. I found I can only eat a limited amount of fruits and veggies. I haven't tried milk shakes with healthy fats though!
Again, thank you so much for taking the time to find all these links for me and list tons of different approaches!
You’re welcome. I have anxiety and doctors have occasionally tried to put me on mood stabilizers, but I refuse. I’ve heard horror stories about those drugs. And I hate it when doctors treat a physical complaint as if it’s psychological when it’s not. I’m not saying that emotions don’t affect our bodies because they do, but if you have something organically wrong, you need some kind of treatment. I do, however, take a benzodiazepine tranquilizer at night to help me sleep because I have insomnia. I’ve never had any issues with it, but I take as little as I possibly can. I hope a stomach tranquilizer will help you!
I’ve been reading about SIBO (small intestinal bacterial overgrowth), and it says not to eat apples. I think I might have that. Anyway, you mentioned apples bothered you, so I thought of that. Also, I have found great relief by putting my food in a blender. You have to be careful if you have high blood sugar though, because your food is absorbed more quickly and it can raise your blood sugar. so if you do that, I would stay away from high sugar foods, which is probably a good idea anyway, of course. The moderator on this page mentioned Covid and I knew one person who got it and it manifested only in her stomach – no other symptoms at all. I wondered if I might have that also because I had been around someone five days before I suddenly started having a terrible stomachache, worse than I’ve ever had. There’s a lot to navigate here, and I wish you luck. Keep asking questions! I’m so glad this forum is here, but it’s sad that we get better answers here than from our medical system. Whenever you get money involved in something, it seems to ruin it. Take care.
I've never tried blending my food, but it doesn't sound like a bad idea- just not appetizing lmao. Thank y'all again for all of this support and I hope your body feels better!
This is interesting- I looked up the super greens drink you suggested because I think I would benefit from it and it contains guarantee gum, which some places say you should avoid if you have digestive issues!! ???Frustrating!!!
@njzmom
I read that guar gum has some health benefits but some people may want to limit intake.
1. https://www.healthline.com/nutrition/guar-gum
2. https://www.rxlist.com/supplements/guar_gum.htm
@njzmom
Here is a review of various organic powders.
https://www.consumerhealthdigest.com/nutrition/best-greens-powders.html
Hello @lexic10
I read your initial post and have been sitting on it since. I just have not known how to reply. I need to start, so here goes…
Welcome! I hate to hear how defeated you feel. For what it is worth you sound very clear and confident in what you do know. Have you ever thought there is just way.too.much.noise around you? I felt like I was being totally logical in plain sight and no one noticed how much I was struggling. There was just so much noise around me. I am so, so sorry you are going through this.
You found a good place here. It is safe and each and every one here wants to help. I am in no way a medical professional so I can’t offer medical advice. Heck, what I am the best at is failing to figure my own stuff out myself. Maybe you can learn from some of my mistakes. (That’d make it all worthwhile for me, ha!) Keep holding on.
You sound like you are in a downward spiral and trying to get out of survival mode. Is that accurate?
Curious……how did you find Mayo Clinic Connect, how did you find your way here? You can do this!
Hey! It's nice to meet you and thanks for the warm welcome. I am so happy I found this platform and I owe it to an old therapist I reached out to after my health got overwhelming. She recommended finding health support groups and thankfully I found this platform.
I have pancreatic insufficiency. The doctors are not good at diagnosing it. One of the symptoms is poop the consistency of peanut butter. More severe symptoms are abdominal pain and diarrhea. I take pancreatic enzymes which contain lipase, protease and amylase. If I am doing dairy I must take lactase. The best way to be sure is take these enzymes and see if you get better. Amazon sells them for around $20. I take 2 capsules at every meal. The prescription meds like Creon are very expensive.