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10-25-2017, 11:22 AM   #1
LivyB
 
Join Date: Oct 2017
Location: Maine
Difficulty Breathing

Hi Everyone,
I will be honest and admit I have not been diagnosed with Crohn's. In 2014 I was diagnosed with Gastroparesis and in the last year I have been dealing with severe bloating, diarrhea, constipation and occasional stomach pains. I also have Psoriasis and PCOS. I am waiting on my final tests and my recheck to see if I can get any concrete diagnosis, but in the meantime I am seriously struggling with my earliest and most consistent symptom...difficulty breathing. I struggle to take a full breath and end up yawning every 30 to 60 seconds. Often I can't 'complete' the yawn and end up gagging. My chest muscles get so fatigued they burn. My problem is that none of the doc's I have gone to know anything about pulmonary crohn's and because my O2 stats come back normal they just ignore this symptom. I am writing because I really need to find a specialist familiar with pulmonary Crohn's. Does anyone know of a doctor who can properly test for this? I live in Maine so if I have to travel, Boston would probably be the closest big city with a large number of specialty doctors.
10-26-2017, 05:11 AM   #2
valleysangel92
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Join Date: Dec 2012
Location: United Kingdom

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Hello, I'm sorry you're going through this

I must admit I don't know a great deal about pulmonary Crohns but from a quick search I can see that its very rare, so it may be that many doctors aren't aware that it can occur. From what I could find, it seems that pulmonary issues are often due to infections or medications used in treating Crohns. I also found that sometimes things like a chronic cough can happen with gastroparesis, so its potentially possible that your symptoms could actually be related to that.

Have you had any tests to check for things like asthma or any other lung conditions? There are so many varied potential causes for breathing difficulties, so your doctors may be having trouble piecing together all of your symptoms, and it could be that you actually have more than one thing going on.

I would recommend trying to keep a diary of your symptoms, write down what symptoms your experiencing, how severe they are (score 1 is nothing 10 is severe) and what you've been doing/eating/drinking. This will help to see if there is a link between any particular activities and your symptoms and will identify any foods that seem to make things better or worse.

If you find you are gasping for breath, have a fever or cant keep down liquids then you should seek fast medical attention.

I'm sorry I can't give you more concrete information, hopefully someone will be along who has come across this before. If you have any other questions or concerns or just need to vent please don't hesitate to post or message one of the monitors or moderators and we will do our best to help you. I hope you find some answers soon, please let us know how you're doing.
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
10-26-2017, 09:59 AM   #3
LivyB
 
Join Date: Oct 2017
Location: Maine
Thank you for your kind reply and your concern. I have already done all of the searching lol and been through a battery of tests (allergy, pulmonolgy, gastroenterology) which is why I am trying to find a specialist in pulmonary crohn's. I read somewhere that someone saw this type of specialist at a Mayo clinic, but I don't know where.
10-26-2017, 06:27 PM   #4
xmdmom
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Join Date: Jun 2012
Location: New York

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I am sorry that you are dealing with these concerning symptoms.

If you have respiratory symptoms due to pulmonary disease, I would expect pulmonary function tests to be abnormal. If you had full pulm fx tests and they were normal, your difficulty may not be pulmonary in nature. You mentioned gastroparesis -is it possible that you have so much bloating that it's pushing your diaphragm up? "Any condition that leads to the buildup of air or foodstuffs could cause both bloating and shortness of breath."

I looked at papers written about pulmonary Crohn's. Most were written by doctors in Europe or China. I did find one written by doctors in Texas. You can find names and addresses in this pdf. Since it was written in 2010, they may not be at the same hospitals.
http://www.ajronline.org/doi/pdf/10.2214/AJR.10.5353
10-26-2017, 07:25 PM   #5
Jabee
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Location: Massachusetts

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Have you been tested for sarcoidosis? Itís just a thought and youíve probably already looked into it. For specialists in Boston I would recommend Mass General/Brigham and Womenís or Beth Israel Deaconness. Both have multi-specialty bowel disease centers. I donít know if either center has anyone with expertise in pulmonary crohnís. Having a different presentation of a disease definitely adds to the time it takes to get diagnosed. Do you have any problems with GERD? I know if left untreated it can cause severe lung problems.
10-27-2017, 04:38 AM   #6
Dawn101
 
Join Date: Jun 2017
Wow, sorry to hear about your difficulties. What is your diet like? I would suggest sticking to easy to digest foods. Eg aid diet for ibd. Stress can cause shallow breathing...and it looks like you may be under a lot of it. Shallow breathing can cause trigger points which keep you breathing shallow. I have dealt with this when under stress and it did not clear until I became mindful of my breathing....taking big belly breaths and honestly facing the cause of my stress. It did not clear over night. I also massaged out the trigger points so I could physically take deep breaths. Good luck. Get your diet sorted out. Having symptoms is just plain stressful on its own. Think holistically. All the best.
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