Skip to main content

I thought I'd reach out knowing that so many of you have dealt with so many different issues in the past.  

Back in early September I picked up a really sore throat so I went into the local medical clinic to see a doctor.  I was told that my condition was likely viral so antibiotics wouldn't be of any use.  The next couple of days, the sore throat went away but a very stuffy nose took over.  After about a week, I started feeling a lot better and most of the symptoms had disappeared.  Then, one morning late the following week, I started getting the chills along with uncontrollable shaking and headache.  It was so bad that I had to leave work, go home, and get under as many blankets as I could.  Later that day I started vomiting and just generally feeling horrible (terrible headache, fever, chills and sweats, body aching).  So, the next day I went to the ER at the local hospital where they admitted me and started doing a ton of tests.  They kept me from Friday till Sunday and sent me on my way with some meds that included antibiotics and aspirin.  They had me go back to the hospital the next couple of days for checks etc.   The Internal Medicine Doctor thought it was West Nile Virus.  I never really felt that good, but better.  The following week, I started having more issues around the time I had to go back for a follow-up.  When I went for my follow-up with the Internal Med guy, he said the blood work proved it was not West Nile and admitted me to hospital right away due to my symptons re-occurring and the way I looked.  I was stuck there all weekend.  They put me on 2 types of antibiotics (Gentamycin and Vancomycin) which I am still on right now. 

I am headed to a larger center tomorrow for a Echocardiogram as they think it could be Endocarditis or something similar.  Throughout this ordeal and in the past, I have never had any heart problems, chest pain, shortness of breath etc.  However, they think they can hear a slight heart murmur. 

I am concerned not knowing what the heck is wrong and waiting and waiting while these antibiotics are taking their toll on me. 

If anyone has any suggestions, words of wisdom, or similar experiences, please let me know.   

THANKS.

 

 

 

 

  

Original Post

Replies sorted oldest to newest

IBD does increase the risk of cardiovascular disease, and autoimmune disorder makes all of us, especially those taking antibiotics and immunosuppressants, prone to infection by viruses, fungi/yeast, and other bacterias. That being said, I can’t really offer much insight and can only wish you the best in the diagnostic testing and with your treatment and hopefully rapid recovery. 

Because of my IBD, I was recommended by my PCP to have a stress test when I turned 50. Last year, I had a repeat stress test and echocardiogram after failing the repeat stress test. I felt great during the stress test and didn’t even break a sweat, but 4 minutes 30 seconds into it, my blood pressure spiked up to 220/120. I asked the tech to let me keep going because I felt good but she declined and terminated the test. My first failed stress test. I then went for the echocardiogram which looked normal. I was told to lose weight, exercise, cut back on salt, take fish oil capsules daily and keep my BP under 135/85 which I have mostly done. The BP and not my heart is the issue.

Good luck and keep us posted.

 

 

 

Last edited by CTBarrister

Appreciate the responses.  I spent 1 week in hospital this time around.  On Friday I had an Echocardiogram.  The results showed that there is no Endocarditis or no major problems with the heart.  A small valve issue was noted but my heart functionality was in the high normal range at 77%.

My GP doctor came to discuss the Echocardiogram results with me.  The local Internal Medicine doctor felt that I should stay on those 2 antibiotics (Gentamicin and Vancomicin) for 6-8 weeks.  Just to be cautious, he wanted to treat it like it is Endocarditis.  My GP called a Cardiologist for another opinion.  This Cardiologist suggested it would be best to discontinue the antibiotics right away.  So, we talked about the varying opinions and came to the conclusion that I would take one more dose of the IV antibiotics that night (Friday), then leave the hospital.  However, I would return to the hospital as an outpatient about every 12 hours over the weekend to continue the IV antibiotics for now.

That was the plan.  Then about an hour later, after the doctor went home, I decided that I wanted to discontinue the antibiotics as per the Cardiologist's suggestion.  So, I checked out and my GP was to follow up with me on Monday.  I got an earlier call from my GI's office (whom I involved in this health issue) and they told me that my potassium was very low in a recent blood test that they had received the results on.  Unfortunately, I was sleeping when my GP called in the afternoon and missed her call today.  

Still very fatigued, tired, and sleepy.  Now, my bowel movements are making me feel like I have a major flare going on as they have been very very gassy, loud, and far from the usual.  The color indicates increased blood in the stool, too.  Mild to moderate stomach aches accompany the bad bowel movements.  Feels like a major flare or pouchitis, or both.  The only thing that has ever gotten me through this type of phase over the past 18 years since I had my j-pouch surgery is time.  I have tried Asacol and another drug on different occasions through through the years with no success.

I have been strongly encouraged to try Remicade.  I went on Humira about 2 years ago for about 4-5 months with 0 improvement.  Blood work then showed that only a tiny % of the drug was getting into my blood stream.  Remicade, being administered by IV, has a much better chance of working than self-injecting Humira I suppose.

I am surprised there are not more posts like yours.

Two years ago, I began coughing and bringing up a significant amount of phlegm. Since then I have seen 8 docs, have had six diagnoses and have undergone dozens of tests. The only thing they have determined is what it isn't. It isn't asthma, bronchitis or an infectious disease. All of the docs commented about a potential connection between my IBD and problems with airway passages. Similar to the connection with having digestive tract issues and having Crohn's.

Last year I had viral bronchitis that was treated with antibiotics.  Treatment did not work and they put me on prednisone and "mis"-diagnosed me as COPD.

Long story-short... I ended up with congestive heart failure and a pulmonary embolism.  My heart was only pumping at 19%.  Cardio doc did a swan catheter surgery to drain the fluid off my lungs and I felt so much better.  

I now take Entresto and Metatoporol (BP medicine).  I tried to wean myself off the meds, but I'm afraid the damage is permanent.

Oh well... I feel great now!

 

Last edited by Lesandiego

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×