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kangaroo woman
Hello. I have been away from the forum for quite a while, and like so many others, it was because I was doing well. I had an adhesion trying to strangulate my ileum in September 2011 that was lysed by the good Dr. Milsom in NYC. I put on the 20 pounds that I lost in a year and was doing well. As you may have already guessed, I am back because I have been having some major issues which have the doctors stumped.
I live in NJ, and on 10/29, the day of Superstorm Sandy, I woke up at 5:30 with heart palpatations and vomited shortly after that. Long story short, I went to two emergency rooms in NJ on Wednesday and Friday of that week because of the vomiting/dehydration, heart palapatations, and just feeling SO bad that I can't even describe it. Because I felt so bad I had only 2-3 hours sleep for 5 days in a row so I was very sleep deprived. Since I have a j-pouch, they took an abdominal radiograph to rule out a stricture..and saw none. (Aren't they hard to diagnose without contrast media? Just wondering.) Both ERs gave me a course of IV fluids, bloodwork, which was normal, and sent me on my way without an answer except the usual "you have a virus." ECG was normal, by the way, during the 30 second window that they collected it.
When I got home, I tried to eat a sip of chicken soup, got that usual warm feeling in my chest and general awful feeling and proceeded to vomit. It was at that point I knew I had to go see my secondary surgeon (the Mayo Clinic did my pouch surgery and doctor there recommended Dr. Milsom) so I went to NY Presbyterian ER, where I stayed for 19 hours before getting a room and staying there for 11 days under Dr. Milsom's care. I lost 10 pounds during the course of this episode and was out of work for 6 weeks.
While in the hospital, I continued with the heart palps, had raging diarrhea, which quite frankly I think was from the potassium supplement they gave me and the fact that I was only taking in fluids...no appetite whatsoever, lethargy. CT scan didn't show obstruction but showed fluid around gallbladder. (I have had stones for years.) Ultrasound didn't show the fluid around the gallbladder but showed a slighly enlarged liver, which they think is just a fatty liver. Upper endoscopy was normal, and pouchoscopy showed inflammation in my pouch so they put me on augmentin.
Echocardiogram was normal. ECG relatively normal, except for the occasional PVC, which the cardiologist said he wasn't worried about. My electrolytes were screwed up from the vomiting, etc. Cardiologist put me on a beta blocker to help with the heart palps.
They put me on an appetite stimulant which also happened to be an anti-depressant because they thought I was also a little depressed. Of course I was a little depressed...I was sick and they didn't know why. Needless to say, the drug didn't help for either the appetite stimulation or the depression even after a couple of weeks so my doc said was ok to discontinue.
My appetite eventually came back. after I was discharged..after I stopped the augmentin (connection?). I went to see my local GI guy who also thinks I have IBS. I have a hard time relaxing my abdominal muscles...they feel constantly contracted. He said that could be a sign of IBS and put me on librax. It is unclear if this helped or not. Last Wednesday night, the heart palps came back strong, and I got nauseas and starting vomiting. (This was after I had some tortilla chips with some salsa...not pleasant having that come back up.) I vomited again on Friday and still have no appetite. I have been in touch with my surgeon's nurses and I have to call back on Monday to see if he can see me when he is back on Wednesday.
I have a near constant feeling of mild pressure/squeezing in my right side which is very similar to what I had before I was diagnosed with the adhesion/stricture. I don't have the urgency so it is unclear if this is because of pouchitis. Doc thinks it is pouchits because no stricture seen on CT scan, but the only way they were able to diagnose the stricture/adhesion last year was with a gastrografin enema. Believe me, that's not something I would like to go through again...and I really don't want to be exposed to more radiation. Dr. Milsom has me on a course of cipro since I was on the augmentin last time. I still feel the pressure in my right side, the area of the previous adhesion.
So much for long story short...If anyone has any words of wisdom (Jan, etc.) I am open to them. Has anyone suffered from the heart palps with the vomiting? I have had several episodes of this happen over the past year, but it was a mere temporary setback that IV fluids and anti-emetics in the ER seemed to help. I thought it was merely dehydration because I don't have the colon, but why would this start happening over the past year (after my adhesion lysis, by the way), when I didn't have my colon since 2004. I have been told several times that it is from anxiety. I find it hard to believe that is the reason. Just because they don't know what's wrong doesn't mean I don't have something real wrong with me versus something that is just in my head. I do see a therapist as needed, by the way, which I started to see when I was told I would probably have to have my colon taken out when they started finding the adenomatous tumors prior to 2004 which I had the colectomy.
Thank you in advance for your response.
I apologize for the elongated post.
Alison

Replies sorted oldest to newest

Jan DollarJan DollarModerator, RN, retired
I had unrelenting palpitations, but without GI symptoms. I had elevated norepinephrine levels along with indications of an adrenal tumor on CT. I wore an event monitor to diagnose the cardiac arrhythmia, since it was intermittent. Had to ahve ablation therapy via cardiac catheterization, followed by an adrenalectomy, which turned out not to be an adrenal tumor. It was an neurofibroma.

My point? Sometimes symptoms are unrelated to our gut problems. We can have simultaneous issues that are not related.

Jan Smiler
Jan Dollar
Last edited by Jan Dollar
kangaroo womankangaroo womanMember
Thank you both for your responses.

I have definitely had the heart palpatations when I thought I was dehydrated, but this is continuing to happen even when well hydrated.

Jan, you're probably right that it may have nothing to do with my gut issues. Just a side note...this past year and a half has the been the most stressful time in my life. I bought a house by myself (big mistake--something I always said I never would do) that ended up needing a lot of work and took pretty much my last dime of savings...never a good thing when you have potential chronic health issues and medical bills. My job at a pharmaceutical company stresses me to the hilt and I can honestly say that I hate it but because I have a single salary it pays the bills so I can't quit. My dog that I love dearly went blind from glaucoma even with the tremendous fight (with eye drops, etc.) to keep her eyesight...broke my heart. My 81 year old mother with MS was misdiagnosed with a tumor on her lung via chest film and then after a CT scan, it was shown to merely be parenchymal scarring. In the meantime, however, for several weeks, I had to deal with the thought of her dying from cancer before the CT scan was done. I lost my best friend who meant the world to me...she didn't die, just opted to end the friendship due to work related conflicts (we work together) that I have since tried (and continue to try) to resolve without success. I miss her dearly. She used to be there for me when I went through health related issues and procedures, and now I feel I have no one. (I do have several friends but they all have their own families and can help out when convenient...ie when they don't have to take their kids to soccer practice, etc. Totally understandable..they have their own lives. I am no one's priority.)

So, my point is...maybe all this crap is from stress?...even the lesions on my pouch...with the cytokine release and secondary inflammation, etc. I never had panic attacks before, but who knows. This morning when I was sleeping and the phone rang, I awoke with my heart pounding...just the phone ringing and waking me up triggered it.

I just made an appointment with an endocrinologist on Jan 13th...one of the few specialists I havent touched based with. I will see what he has to say. They all seem to be making educated guesses.

Thanks again for your input.

Alison
kangaroo woman
Jan DollarJan DollarModerator, RN, retired
Before you see the endocrinologist, your primary doctor can order a screening 24 urine for catecholemines that can help rule out an adrenal tumor (pheochromocytoma). They can also order an event monitor for you to wear to rule out cardiac origin palpitations. Mine were sudden and would stop as suddenly as they started. Never was seen on a regular EKG, or even the 24 hour Holter monitor. The event monitor is worn for weeks and you turn it on when you feel the arrhythmia start. That was how I was diagnosed with my tachyarrhythmia that required ablation. All of this took about 6 months to sort out, so if youcan get some screening done in advance of seeing the specialists, it helps.

By the way, the adrenal tumor releases hormones that can trigger panic attacks (as theyare one of the symptoms).

Jan Smiler
Jan Dollar
kangaroo womankangaroo womanMember
Thank you, Jan. Man, you have been through a lot. What is involved with the cardiac ablation?

I will definitely request the 24 hour catecholamine screen. My GP only works twice a week, and it's hard to get an appt with her as well, but I see my gastroenterologist on the 9th so I can ask him to order it.

I had a CT scan to see if I had a stricture with my pouch. Would that have picked up an adrenal tumor if I had one?

Do you need any post adrenalectomy therapy (e.g. pred) or are you good because you still have one adrenal gland?

I wore a cardiac halter for 24 hours that showed some minor issues but nothing that the cardiologist thought required the extended monitoring you mentioned. I can mention it again to him.

Sorry for all the questions. It's a shame we have to try to figure out our issues...sometimes the doctors don't look outside the box. Not one of them mentioned the 24 hour urine screen for catecholamines...I mean what could it hurt...it's the most non-invasive thing you could have done.

Thank you for your help.

Alison
kangaroo woman
kangaroo womankangaroo womanMember
...and finally...has anyone had any bad experiences with myofascial release? I truly think the pain in my right side is adhesion related since it didn't go away while on antibiotics (ie don't think is pouchitis), and it feels exactly like it did in Sept. of 2011 when I had the adhesion lysed.
I got a (seemingly) good name of someone who specializes in this from a friend of mine who uses her, but I am a little weary of having someone mess around in that area. I asked my surgeon's nurse at NY Presbyterian today and she said she never heard of it and they have never recommended that for people. Not surprising that they don't think out of the box there. I will ask Dr. Milsom about it on the 14th when I see him.
Thanks. Sorry for being so needy.
Alison
kangaroo woman
Jan DollarJan DollarModerator, RN, retired
Yeah, the CT should show an adrenal tumor, but they can be tricky. If your 24 hour urine is positive, there is a nuclear scan that is more specific. Reason I know about it, is because after the adrenalectomy, the follow up 24 hour urine was still positive, and the CT showed the tumor was still there! So, low and behold, turned out to be a neurofibroma (not connected to the adrenal gland at all).

The nuclear scan ruled out active tumor tissue. And yeah, no problemo with the one remaining adrenal gland.

The cardiac ablation involves cardiac catherization and beat ablation of the heart conductive tissue that was giving rise to the palpitations. This is something one is born with and it can take decades before it decides to cause problems. Typically, once it starts happening, it becomes more and more frequent. I was having runs of heart rate over 200 for 30 minutes or more, no apparent trigger. Medications were of not helpful.

I'm fine now. That was 6 years ago.

Jan Smiler
Jan Dollar
kangaroo womankangaroo womanMember
Thanks for the explanations, Jan.
Oh man...so they took your adrenal gland out for nothing. That stinks.
These scans sometimes worry me because I am sure they are only as good as the radiologist who reads them....like the one who said my mother had a lung tumor on chest rad and it turned out to be nothing. Scary.
Wow...a heart rate of 200. That must have been awful. I had a resting heart rate of 160 when I had pericarditis 20 years ago, and I felt like my heart was going to beat out of my chest. My eyeballs were beating in sync with my heart. (By the way, the cardiologist doesn't think there's a connection between the heart palps I have now and the history of pericarditis.)
So glad you are fine now, Jan. I know it can be a long haul to get an answer..you have a test done, it takes a week to get results..another couple weeks to get a follow-up with specialist..you could die in the mean time. This is why after my parents pass away, I plan on moving out of NJ and closer to the Mayo Clinic. I figure excellent health care is a good reason to relocate...
Thanks again for your help.
kangaroo woman
Scott FScott FMember
I'm sorry you're having such a rough time, Alison. I hope this gets figured out soon. Pheochromocytoma is a long shot, but it certainly needs to be considered. Your palpitations most likely have a single cause (whatever it is) - cardiac ablation would treat one possibility (not pheochromocytoma). It may be less threatening to the docs if you mention the possible diagnosis rather than telling them what test to run. None of this sounds likely connected to your pouch, but that pain at your adhesion site needs some attention paid to it, IMO. Good luck, and keep us posted!
Scott F
kangaroo womankangaroo womanMember
Thank you very much, Scott. I will keep everyone posted. Separate from the heart palps, I am hoping that myofascial release will be an option for this pulling in my side as long as the scar tissue is not tryng to strangle my poor little ileum. I still don't think the pain is from pouchitis, but I may have a hard time convincing my surgeon to think the same way. If he's too worried about me trying it, I won't do it, but we'll see...

Alison
kangaroo woman
K kubriderMember
I think it stinks that we have to go through these tough times.Stress can do a lot of weird things,you've had a great deal of stress recently.Not to suggest that there's no medical issue present as well.Perhaps taking more time for yourself to just relax,yoga? breathing exercises? My DR even suggested a glass of wine or two to winde down the day.If you don't already you may want to try it.I do.........
K

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