Need help with gut issues - feeling discouraged.

Posted by shooei @shooei, Dec 12, 2020

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.

Profile picture for boyersandy @boyersandy

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.

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Hi @boyersandy . I have never heard of pancreatic insufficiency so I did a quick search on this site and found quite a few discussions and comments. Have you found them? Here is one that has the most recent activity…
https://connect.mayoclinic.org/discussion/pancreatic-insufficiency-no-cause/
Nice to meet ya,
Janell

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Profile picture for lexic10 @lexic10

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.

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It is nice to meet you as well, @lexic10 . I agree, finding a safe and accepting place (particularly Mayo Clinic Connect now that we know about it), to talk through managing our health challenges is super comforting. Everyone needs someone to walk with them.

Have you had a chance to look around the site, check out what groups are out there? What are you thinking your expectations are? You mention “old” therapist. I assume you are not talking “ancient” 😜. Is she helping you make progress with your care providers or do you feel stuck?

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Profile picture for lexic10 @lexic10

Hi, I'm Lexi and very new to chatting online like this. I find myself here because the past two years I've been dealing with almost nonfunctional gut pains. I make so many irregular bathroom trips, followed by extreme nausea and vomiting. It was so hard to eat even the smallest amount of food. Eventually, I had to drop out of school, quit my job and become bedridden for months. I've spent so much time at the doctors with so many different opinions about what's wrong with me. When I was getting all my scanning and tests done, I was told there was internal bleeding in my lower abdomen but nothing would be done because I wasn't anemic. However, going to my doctors not even two weeks later, I was told there's no bleeding in the pictures but I'm fairly anemic.

I've been on countless medication and diets from the doctors without a single diagnosis to my name. The best advice they had was for me to drink out of a straw. I've lost so much weight and am hurting myself to try to maintain a healthy number on the scale.

I just don't know what to do anymore and feel so defeated. Thanks for listening. < 3

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Hey Lexi and welcome! I’m new here too. Has Crohn’s and Ulcerative colitis been ruled out? A lot of your symptoms sound like it could be Crohn’s or UC. Do you have diarrhea? And where is your pain located? Lower right/left side? Near your hip bone(s)? Also, have you been able to eat more? Less vomiting hopefully? I have Crohn’s disease btw, I got diagnosed at 15 and I’m 39 now so I have a lot of experience with living and dealing with Crohn’s disease. Please ask me any questions and I’ll answer as best as I can. I’m so sorry that the doctors aren’t helping you feel better. Did they at least give you pain meds? And I don’t mean Tylenol/ibuprofen. NSAID’s can be really harmful to your stomach and can cause bleeding. So limit those if you’ve been taking them. Best of luck to you!

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Profile picture for lexic10 @lexic10

Hi, I'm Lexi and very new to chatting online like this. I find myself here because the past two years I've been dealing with almost nonfunctional gut pains. I make so many irregular bathroom trips, followed by extreme nausea and vomiting. It was so hard to eat even the smallest amount of food. Eventually, I had to drop out of school, quit my job and become bedridden for months. I've spent so much time at the doctors with so many different opinions about what's wrong with me. When I was getting all my scanning and tests done, I was told there was internal bleeding in my lower abdomen but nothing would be done because I wasn't anemic. However, going to my doctors not even two weeks later, I was told there's no bleeding in the pictures but I'm fairly anemic.

I've been on countless medication and diets from the doctors without a single diagnosis to my name. The best advice they had was for me to drink out of a straw. I've lost so much weight and am hurting myself to try to maintain a healthy number on the scale.

I just don't know what to do anymore and feel so defeated. Thanks for listening. < 3

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I’m so sorry you are struggling to get a diagnosis & proper treatment. It can be physically and mentally exhausting.
I have a couple of ideas/questions for you to explore with your doctor based on experience I’ve had and my daughter has had:
Have you been screened for an eating disorder? This would not explain all your symptoms but could be a factor.
Have you been checked for gastroparesis? It’s slow emptying of the stomach & causes nausea and makes eating difficult.
You might be Celiac or at least gluten sensitive. You could try going gluten free for a few months to see if that helps. You might be sensitive to other things in your diet too though. Enterolab tested me & once I knew all the foods to avoid my Collagenous Colitis improved quite a bit (it’s only been a month or two - but went years without any real help). Some insurance won’t cover their tests but me and a whole community of folks who have Microscopic Colitis have been helped by them.
Wishing you the best

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Profile picture for lexic10 @lexic10

Hi, I'm Lexi and very new to chatting online like this. I find myself here because the past two years I've been dealing with almost nonfunctional gut pains. I make so many irregular bathroom trips, followed by extreme nausea and vomiting. It was so hard to eat even the smallest amount of food. Eventually, I had to drop out of school, quit my job and become bedridden for months. I've spent so much time at the doctors with so many different opinions about what's wrong with me. When I was getting all my scanning and tests done, I was told there was internal bleeding in my lower abdomen but nothing would be done because I wasn't anemic. However, going to my doctors not even two weeks later, I was told there's no bleeding in the pictures but I'm fairly anemic.

I've been on countless medication and diets from the doctors without a single diagnosis to my name. The best advice they had was for me to drink out of a straw. I've lost so much weight and am hurting myself to try to maintain a healthy number on the scale.

I just don't know what to do anymore and feel so defeated. Thanks for listening. < 3

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I'm so sorry you're experiencing so many health issues. It's so frustrating to be told they can't figure it out. I'm not a doctor, but drinking through a straw seems like the opposite thing to do for your issues. I know, another person saying so this or do that. I was told by my gastro not to drink through a straw, and ever since switching to using a Hydro Flask instead of a large "sippy cup" with a straw, I've been better in that regard. I have an esophageal disease, so my experiences may not help you. I had to cut out all fresh veggies, salads & hard fruits...apples definitely a no, as is pineapple. I switched to local raw honey in my tea rather than other sweeteners, and I was told to cut out all caffeine, which has helped. When I used to make coffee, I added cinnamon & maple syrup to the pot, and used half&half instead of flavored creamers that I discovered had carrageenan, a bad additive. I had to eliminate most dairy also. I would suggest maybe do some research on elimination diets and see if you can pinpoint things that exacerbate your issues. Trust me, totally changing your lifelong dietary choices is extremely difficult! I also had to stop having any spicey foods, which I really miss. Perhaps take these suggestions along with the others you've received and see what you can do in your own, as it seems like you're not getting terrific medical advice from the professionals. You may want to reconsider your medical team...are they experienced in YOUR specific issues? Do you like them? Do you trust them? Do family or friends have legitimate recommendations of physicians with whom they have good experiences? Make sure your gastroenterologist is knowledgeable and well-trained in your specific issues. Do your research on them. I don't know if there's anything more important than finding a qualified physician with expertise & experience with your issues, and that you like and trust. Sounds like you're being dismissed by a variety of doctors who are interested in figuring out what's wrong with you. To be told it's all in your head isn't practicing good medicine. Yes, we all get frustrated and at times have anxiety, but who wouldn't when you're sick, tired of ensuring procedure & trying medications that don't work. I'd suggest trying a PPI like Pantoprazole. I'm on it and also Hyoscyamine. Recently put on an oral inhaler corticosteroid. I'm very blessed to have a gastro that I like and trust, and that is very experienced in my disease (Lymphocytic Esophagitis). My issue is esophageal, not intestinal. I know I can trust my gastro, and appreciate that he uses conservative treatments first and does all of the appropriate testing to rule things in or out. I will pray that you find a gastro you also can trust and like. You can always make an initial appt. for a consultation to see what you think about him/her. Keep really good records of dates of tests, rest results, things they've tried & failed, all symptoms, all meds, etc. I use Word and Excel spreadsheets and list everything that's done by any & all doctors, lists of meds tried and/or are using, etc. I use the Word doc to take to appts... not only does it replace filling out 10 pages of questionnaires, it shows the doctor that you know what's going on. To a person, they've all said "I wish all of my patients were this thorough". Besides, I would not be able to remember what happened 10 or 10 years ago! Or even last year, lol. I break my multiple diagnoses into categories, like gastro, orthopedic, pulmonary, etc. I also list all vaccines. I will pray for you, if that's okay, to find the right doctors, get the right diagnoses, and get the right treatment plan to help you heal & feel better. I understand what it's like to live with chronic health issues...they are at times debilitating, and always life-changing. I'm truly sorry you seem that you're at your wit's end. Take a deep breath and start on a new journey towards finding the right people & treatments. Best of luck to you.

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