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I’ve been having a severe pain that I can’t seem to get help with. Doctors are throwing up their hands and quitting on me and I’m getting worse and need help, ASAP.
How it feels to ME
First Cycle
As waste builds up in the colon to prepare for a bowel movement it seems to backup and cause a bulging feeling in the upper left back flank area. Like a snake that ate at mouse causing a bulge. The location seems right at the splenic flexor where the colon has a 90 degree drop into the descending colon. As the pain begins and time begins to pass my pain then starts to go from a dull (fist size) type pain to then a stabbing knife pain. Feeling as though the larger the backup the more severe the pain gets. This is when my pain is a 10.
My belief is when this bulge gets bigger it is either doing 1 of the following;
1. The colon itself at that bulge location is emitting the pain do to years of irritation, or
2. The bulge is pressing on either a nerve or another organ at that location, such as the spleen due to years of irritation.
Second Cycle
After having a bowel movement the pain then normally subsides. It subsides to one of the following;
1. Pain goes back to the dull (fist size) pain
2. Pain goes back to the dull (fist size) pain and stomach gets very upset, especially if eating.
3. Pain goes away until next cycle
4. Pain location starts to become very irritable. This can cause severe anxiety and major palpitation beating like a heart. (most common)
Third Cycle
After the bowel movement the previously backed up waste now starts to move again. I believe this is what’s causing the irritability and anxiety in the same location as the pain. This is a very strange feeling. Like a spasm feeling, or twitching feeling. Now go back to First Cycle and it all begins again.
Important notes of interest
Constipation
Pain is usually always worse if I am constipated.
I am taking laxatives, more fiber (supplements and fruits, etc.) and sometimes even stool softeners and I still seem constipated.
For several years I seemed to have to push hard to have a bowel movement. Sometimes so hard I see stars.
I have recently given myself feet enemas to help with the constipation. This works to relieve the pain but also normally upsets my stomach.
Current Diet and weight
I have switched to a gluten-free diet – 2 times I broke off it did seem I got much worse stomach.
I have NOT been diagnosed with Celiac though tested 2 times.
I have lost 35 lbs in last 4 months – My believe is due to upset stomach, nausea, pain causing loss of appetite and less calories from gluten-free diet
Previous Diet activity for years leading up to and mostly during
Drank lots of alcohol – 3-5 beers a day.
Drank many sodas – 3-4 a day.
Meat and potatoes kind of eater.
Not many fiber type foods or fiber supplements.
No vitamin supplements.
Played weekly sports but no true exercise routine.
Very active person both at home and work.
Stressful life both at home and work.
Important point
Ate many times late at night just before falling asleep. This seemed to many times bring on the irritation by morning. Like the food was being digested while I slept and because it happened while laying down it would irritate this location. Actually like this is what started the whole problem.
Posture aggravation of pain
Sitting in a car seat - Pressure from the car seat seems to severely aggravate the pain location. If the pain area is irritable at the time I get terrible anxiety.
Laying flat out on a bed, stomach up - This seems to also put pressure on the pain location and can either be pain or anxiety.
Laying flat out on a bed, stomach down – better. Pain less severe in morning. Like gravity is linked to my aggravation.
Standing up – This helps pain and doesn’t make it more severe.
Walking – Seems to help a bit and doesn’t seem to make it worse.
Sitting in a chair to eat or work on a computer – Sometimes it feels like its crimping something in my stomach or abdominal area left side.
Medications
Over the past 7 years I have had more meds prescribed then I can even count. Honestly. A table top worth.
I’m currently taking just small amounts of Valium and Daluidid when pain gets so severe. I have found that all the drugs are causing so many other problems.
Ambien CR to sleep. Important point. This seems to have some sort of relaxant that provides the BEST pain relief of all. Wish I knew what.
History
This pain started nearly 7 years ago. At that time it would come and go. On for a week and off for 6 months. I guess you’d call it acute pain then. It has gradually gotten to what I now call Super Chronic. I’ve been to the ER at least 15 times and admitted to the hospital 4. I have had all the basic tests and more. Colonoscopies, Upper GI’s, CT scans, ultrasounds etc. All test have come back clean. Doctors say I have a clean bill of health, but, I still have severe pain daily now. My thinking is cause this is some sort of irritation that over the years has continued to the point that now it won’t subside. I have to eat.
I don’t believe I’ve yet had a doctor that will stick with this and think outside of the box and listen to me. They just performed all the same tests I’ve had before. I’ve told them this. I’ve tried to explain my thinking to but all my doctors seem to never even let me finish describing the cycle of events before they’ve already ordered the standard tests. Then when the results come back ok then they doesn’t listen and throws up his or her hands saying, I don’t know what to do.
Latest News
This latest chronic bout started 4 months ago after a very stressful event. So my primary doctor (knowing I’ve had this pain before) sent me a psychiatrist who put me on ativan and other anti-depression drugs believing it was all in my head. From that I spent the first 2 months while in pain tackling a mental identity problem. The drugs upset my stomach and gave me brain fog, or jello brain. I couldn’t get my head off my pillow in the morning. I stopped the brain drugs.
Now that I am off all of those drugs I’m back to myself again dealing with a super chronic pain problem. The pain not only hasn’t stopped but has gotten worse.
My GI doctor and primary doctor wanted me off their backs so they gave me a referral to Stanford 2 months ago.
I’ve got tests ordered such as a capsule endoscopy, food emptying test, and a sphincter anorectal manogomy test ( I had this one). These tests are as far out as Oct. 16th due to lack of openings at this very busy hospital. I truly wish but don’t think they will find anything. Why, cause I believe it’s an irritation pain and they can’t see those.
Recently I had a spinal nerve epidural injection. – Doesn’t seem to have helped at all. Was recommended to see if it’s a Thoracic 12th rib nerve pain. After the anesthetics wore off the pain began to come back.
Just went to Stanford to perform my Capsule endoscopy. After becoming very weak from the go-litely I ended up in ER. I then took the capsule thatday after the ER and ended up back in Stanford ER the next day again in severe pain and very weak. Well Stanford admitted me into the hospital for more testing. They performed a CT scan and many blood tests. After 4 days in the hospital they released me with again, NO diagnosis for my pain.
I have looked on the internet for any sign of someone having these types of problems and the closest has been a splenic flexor syndrome. It does seem possible.
Is there anyone that’s had this problem or any doctors that can help me. Please, please please.
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