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15 replies

I'm a mess!

clz81clz81Member
It's been a rough couple weeks. I was in the hospital for an obstruction earlier this month. And since then, things are not getting better. I've been having extreme difficulty emptying the last 3 weeks or so (thus what may have been the culprit for the "obstruction"). I'm lucky to go twice or maybe 3 time a day right now and it takes some effort. When I was in the hospital, the did not check me for a stricture. They normally do, but probably forgot that part since I got better so quickly. I've never had a stricture before, but also have never had trouble emptying like this (other than the two times it was definitely an obstruction). If this issue wasn't bothering me enough, the last week and a half, I've been having chest pains and severe body aches in my upper body and extreme fatigue. Also, just checked, and I have a low grade fever (99.5-99.9). The chest pain/body aches isn't anything new to me. I've battled with this for 15 years on and off, never with an actual diagnosis (best answer was inflammation due to my autoimmune disorder). I haven't had it in 6-7 years so I thought maybe it was behind me. Now, I'm trying to figure out if this is all linked somehow. My inflammation markers are up, but they always are (especially since I'm treating chronic pouchitis). Is my body in some kind of extreme inflammation mode? I'm prone to bursitis in my shoulders...does that happen in the neck/back/chest too? I just rotated to Xifaxan from Flagyl, which I had been on for several months. I think it's treating the pouchitis fine as I'm hardly using the bathroom, but I'm having other symptoms of pouchitis (fatigue, low fever, flu-like feeling). Most people might think, well, you're describing the flu, but pretty sure it's not that. The symptoms get worse each day, not better. And some days are good and some days are bad. Plus, it's been almost 2 weeks, and my whole family is healthy other than me.

Sorry for the long story. Waiting to hear back from my GI to see him as soon as possible. Any other thoughts/advice would be appreciated til then!!!
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clz81clz81Member
I doubt it's the Midwest virus as that virus starts with a cold and moves into the chest causing wheezing. Ive not been sick and have no respiratory symptoms. I also have a first grader and three year old that would be the ones to bring it into the house, and they are fine. Respiratory flu hasn't started here yet, but I have been in and out of ERs and hospitals.
Jan DollarJan DollarModerator, RN, retired
Under 100, maybe with the arthritis, but not 101. This is likely an infection. Could be viral or bacterial. Until you can nail it down, all you can do is keep up with your fluids and rest. If the fever goes up with new symptoms, you'll need to call your doc. Last December I went from feeling funky with some occasional chills, to high fevers and violent, shaking chills within 24 hours. Wound up in the ER with sepsis, tanking BP, and no indication of what it was. PCR test for the flu was negative, as were urine and blood cultures, and chest x-ray. They never figured it out.

The moral of the story? Never dismiss a fever over 101. Things can go south fast.

Jan Smiler
clz81clz81Member
All came back fine from the E.R. No explanation for the fever or pains. X-rays, CT, and blood all normal. This was a cooky doc though that probably should just not share information unless necessary. He said that one of the blood tests showed I had a blood clot so he needed to make sure I didn't have a pulmonary embelism from the chest pain! When that came back fine, I was like, well, now do I have a blood clot in my head, legs, or elsewhere in my body. He's like, oh no, you're fine. Then later, he tells me I have more fluid around my heart and lungs than most people. That seemed alarming so I asked more questions, and he's like, oh no, you're fine. Why tell patients information like that? He could have just said, "CT and chest x-rays clear".
skn69skn69Member
He's protecting himself in all probability...or he is really a novice at this!
What you are describing reminds me of myself in 1999/2000.
It started out with severe fatigue, low grade fevers, pouch issues (difficulty emptying, pouchitis symptoms, severe headaches, chest pain, night sweats, sleeplessness, joint pain...)
I was treated for everything under the sun except the problem.
Nothing showed up anywhere except for a high white count. Then after about 6 months of this I started to 'sprout' cysts. They went from pimples to fully blown infected cysts in 24hrs.
I got them in the inguinal area, then behind the knees, the arm pits, behind the butt (top of the thighs)...in all of the areas where there are lymph nodes. I once asked my surgeon what I could do for them 'not to come back' and he asked me why I wanted them to come back???!!!! (made me feel stupid!)
I had a generalized infection that had my surgeons cutting the darned cysts out every other week...and had me on every antibiotic under the sun...But as soon as I stopped the antibiotics the fatigue and fever came back.
I lost tons of weight, could barely function like a human being and only wanted to sleep or cry.
Then hubby sent me to 'his' doctor. A good, old fashioned family doctor.
He told me that everyone was treating the 'symptoms' but not the cause of the problems. He wanted to find the origins of the whole problem. He was a true diagnostician.
In the end it turned out to be that I had necrosis behind the pouch...my body was rotting from inside out..litterally.
You need to find someone to look at the whole picture and not just the symptoms.
In my case they had to open me up, take down my pouch, clean the abdominal zone and then move my pouch elsewhere (I have a k pouch)...not fun but it did save my life.
You may have a silent abscess, a very localized infection or something else smouldering in there...in any case it does not always show up on a scan or a MRI.
I don't know if this helps but I wished that someone would have warned me sooner that all of these things were possibilies...
clz81clz81Member
Thanks for the information Sharon! Right now, there is nothing indicating there is an infection anywhere. White cell count normal and the fever was gone by the time I went into the hospital. (Don't know if it's true or not, but I actually heard that after a deep tissue massage, if you have a low grade fever, it can cause it to spike from all the toxins being released into your body. The timing was perfect for that scenario). I don't have the flu-like feeling anymore, but the chest pains are still present. Likely my old chronic issues coming back. For now, anti-inflammatories, and just wait for the chest pains to go away. Still having follow up with GI on Friday.
skn69skn69Member
Do you still have your galbladder?
Sometimes the galbladder pain can mimic a heart attack or cause breathing difficulties.
I honestly thought that I was having a heart attack one day while cleaning my house. I couldn't climb the stairs up to my bedroom...chest pain, breathlessness ...
But I also had the 'knife in the back' pain between the shoulder blades and climbing up to the shoulder (sometimes reaching as hight as the jaw and ear).
My GP sent me to have an ultrasound and my surgeon booked the galbladder surgery for the following month (I was working and couldn't take off before the end of semester).
Long story short...apparently us pouchers tend to have lots of galbladder problems...mine was the size of a large melon! (1 litre worth of trapped bile was suctioned out before they could remove it)...
That deep tissue massage that you were mentionning...Did they do the abdomen too or just the back and legs? If they did the abdomen they could have torn adhesions, shaken up the galbladder and released a rush of bile into your system (causes incredible nausea too).
Just some ideas.
Sharon
clz81clz81Member
Thanks Sharon, really appreciate the ideas! I feel like everything that could have gone wrong with you healthwise, has some how :-( So sorry to hear about this issue. Regarding the pains...this is not something new to me. I've had these chest/muscle pains on and off since I was 18. I haven't had them in about 6-7 years though. The last time it lasted for about 6 months and I was on a long term anti-inflammatory. I was just trying to think back to when I had my UC flares if this issue was flaring as well, but I don't remember there being a connection. I do still have my gallbladder. They looked at it last time I was in the hospital, but don't think they did this time. Regarding the deep tissue, it was not the cause of the problems. I went for the massage, because the muscles aches were so intense (about 10 days after the chest pains/muscle aches started). I thought it could have been the cause of the random fever though as I didn't have a fever, had the massage, got a fever, then next day it was gone again. The massage was also just shoulders, upper back, neck, and chest so nothing in the abdomen. I'm just going to bring all this information to my GI...offer all the suggestions from everyone...and see what his thoughts are! I feel like prednisone will probably make everything better, but after being on it for so long after my last obstruction, I'm really hesitate to go back again :-(

Thanks again everyone so much!
clz81clz81Member
Thought I would add to what went on the remainder of the week. Well, after I was released home from the ER with the chest pain, the next day, I started coming down with partial obstruction symptoms. Once the vomiting started, the pains were so intense, I had to go into the ER. From Wed night thru Friday night, I was in horrific pain with little relief from pain meds since I was refusing the narcotics after the first couple rounds to avoid bowel slowing (and they wouldn't give me NSAIDs with the GI issues I was having). They really need to make Tramadol and Tylenol IV meds! This was so much worse than any of the 3 bowel obstructions I had combined. Basically 2 straight days of bowel knots and spasms and sharp pains. It did eventually resolve, and now, back home again, with no more answers. More tests to follow this week likely. Another MRE and a defogram or something like that.
clz81clz81Member
Rachel, good to know IV Tylenol exists! Not in any of the ERs or hospitals I've been in unfortunately :/ Over the course of the few days, I had to get a couple rounds of Dilaudid and one of morphine as the pain was unbearable, and I'm sure it did not help my cause. After that though, I started taking an oral Tramadol in between vomit bouts (so happy it's a very little tablet). It worked for the most part as it only needed about 30 minutes to kick in (but instant IV meds are so much nicer).

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