- Joined
- Sep 26, 2021
- Messages
- 8
HELLO,
My name is Ramona, Finally decided to join. My partner and my health advocate, Art has been frustrated with my illness so I need to share my woes of crohns disease of 50 years since age 12-- 1971. Age 12 was not a time in my life to really understand this disease. Monthlys were bad a fistula still have for 50 years. That little bugger was hard to find and March of 2021 was found. I got married and was seem to be in morning all the time*. 3 pregnancies was a twin 3 babies 2 babies 2 babies 8 miscarriages* that blasted crohns got in the eggs sac killed my babies. So i threw in the towel to have kids -boom pregnant on the pill was in bed for 7.5 months. had a girl she is 39 now.
In the 90s had a retro vaginal fistula had partial hysterectomy and bladder prolapse cancer/crohns on the partial uterus removed and a nasty ovary removed -right. Other fistula still there.
Covered with the red painful rashes i would faint alot. So re adjust my life went p/t. Remember the other fistula hiding not found on tests since 2021. Well for awhile I thought ok good.
Over time marriage got soured, Husband did not understand my illness he hated like to go out and eat but when I was ill could not stand at stove I worked 40 + years from age 16 on. Delt with this illness. oh by the way remicade --lost my hair 3 years to grow back.
came back adjusted get out of marriage, older brother helped me of 23 years. Moved back home Calif area of Willits hated it.
Met Art 18 years strong but not marriage gave it up for lent ha ha! Arthur is different guitar player jazz and engineer solar electric.
He helped me alot moved to Sonoma county area r park.
Went and found work boom ill again off work disb. had a pain left side never knew why. Over time left side was bad my dr was not in tune
with crohns she is a PA. I read about all the unusual tests crohns buddies have and never heard of. She sets me back and I dont get good care of drs here in sonoma county, The best are on better plans or moved have medi-cal now.
misdiagnoised kidney cancer 2016 partial removal Left side!. xray showed bad hernia in umbilical area also .Had surgeries apart2018 -crohns bilical area removed. ln 2019 another hernia mesh inserted,Dr said if you find fistula referral to me will fix it. My spine is shot bottom end crushed disc and generative.Neck pain comes and goes. my legs tingle and burn rub alot indicates trouble in gut !! Have v viens but drs wont work on them painful at time when a flare starts.
Before covid 2020 round got bad found a dr and referred to s fran area find remove fistula colostomy stoma and fix prolapse I knew down the lane a bag would come in my life possible better quality but I did go in my 40s 1990s to a support group s county area and most were happy - they got less crohns problems . i did read on some forums the change to remove stoma bag and surgery removal regrets it.
Also the county medi-cal fought for me, but the other establishment turned me down setback again. March 2021 found fistula.surgery was
planned SEPT 13 2021 but alas not got the surgery that surgeon spoke of. Was to be a as follows - laparotomy exploratory possible intestinal resection possible stoma formation. He had no gyno dr they did not belly cut, he removed only the adhesions omentum pulled up? found a hernia belly button area repaired. Dr said no fistula?? He left deseased ovary in left pain all the time now removed adhesions around ovary now hurts i told him of the ovary to remove it if needed. Nurses were puzzled my room gone 14 days stay gone had roller walker gone -art was working with ostomy nurse on phone set up home care ALL was covered by medi-cal ! never used any services. there was a box at home -waiting for me all beautiful expensive colostomy underwear lacey things still had tags on, 9 pair i told the nurse what happen keep the under wear, opened box not accepted they are sending me the stroller with seat with brakes YOU deserve it waiting for nurse who clears medical supplies went out of town.
i need it my health is dropping again. Update i forgot to mention sept 5 went to er abdominal distress left side again, novato calif chest pain? not heart attack and headache with neck pain told me covid side effects high blood pressure to some and stiff joints. went home. They gave me the paper what next the whole precedure that will be done on sept 13th surgeon does not know of this paperwork given to me.
After the surgery FELT WORSE *legs tingling and burning neck pain* like the time of fistula in the 90s called dr he said you had catheter in take some tylenol, that BAD DR-off limits no tylenol type will choke and sufficate die and any cillin does it to me also. Was floored art says lucky you know not to take, he did not look what you are allergic to.
The day of sept 17 went to er petaluma was so ill had my new cane used.got there at 10 am see 8 pm was a busy er.
art went home call me for ride home.Same* symptom from sept 5 now middle of oblique/abdomis area feel like im being crushed breast bone intense pain?
next day went to records got everything to compare from surgeon day and er visits. fyi feeling nausea run-threw up run again vomit not sure belly is real sick feeling large intestine left side again feeling bad right side large intestine now feeling it
Continue on-exray shows bowel mesentery area large intestine area portions of the left hemicolon are under distended limiting evaluation for mural thickening
scattered colonic divertic diverticula
abdominal area small amount of deep soft tissue gas overly right rectus abdomis muscles of uncertain etiology
portions of the colon undistended
This was found on friday sept 17th was diagnosed with diver issues with crohns disease when i was 12 year of 1970 mum said no surgery too young much responsibility for stoma bag issues
They said-need new dr they called medi-cal during day got one will see soon S rosa internal medicine gastro crohns specialist,
they said everything looks ok, but the paper said reason for visit colitis? ab pain.
gave me morphine iv feel real good no pain and smiling they said ex ray and cat need to do for you.
The dr in charge was great came to see me in lobby he said i know your surgeon odd what he did to you. well hope to get answers soon calling friday for referral hate the body pain
My goal in life is to get better im relocating if all goes well to monterey im a professional chocolatier want my own store. i see in a nut shell possible colostomy if left colon is bad im in pain and hate the radiating pain in body i stay up 3 am on left lower abd pain and side pain swelling in the backside always. could it be my large colon ? im ready if they want surgery oh by the way medi-cal has sent accepting letter on colon removal of small intestines good till march 2022 . office said original surgeon needs to do it. if new dr puts in referral may not do surgery but i will let the new dr know im afraid of bodly harm due to the wrong RX treatment for pain manage and possible knowledge of what surgery was to be preformed also laporatomy and stoma surgery.
hope you are good coping till new dr
Ramona
My name is Ramona, Finally decided to join. My partner and my health advocate, Art has been frustrated with my illness so I need to share my woes of crohns disease of 50 years since age 12-- 1971. Age 12 was not a time in my life to really understand this disease. Monthlys were bad a fistula still have for 50 years. That little bugger was hard to find and March of 2021 was found. I got married and was seem to be in morning all the time*. 3 pregnancies was a twin 3 babies 2 babies 2 babies 8 miscarriages* that blasted crohns got in the eggs sac killed my babies. So i threw in the towel to have kids -boom pregnant on the pill was in bed for 7.5 months. had a girl she is 39 now.
In the 90s had a retro vaginal fistula had partial hysterectomy and bladder prolapse cancer/crohns on the partial uterus removed and a nasty ovary removed -right. Other fistula still there.
Covered with the red painful rashes i would faint alot. So re adjust my life went p/t. Remember the other fistula hiding not found on tests since 2021. Well for awhile I thought ok good.
Over time marriage got soured, Husband did not understand my illness he hated like to go out and eat but when I was ill could not stand at stove I worked 40 + years from age 16 on. Delt with this illness. oh by the way remicade --lost my hair 3 years to grow back.
came back adjusted get out of marriage, older brother helped me of 23 years. Moved back home Calif area of Willits hated it.
Met Art 18 years strong but not marriage gave it up for lent ha ha! Arthur is different guitar player jazz and engineer solar electric.
He helped me alot moved to Sonoma county area r park.
Went and found work boom ill again off work disb. had a pain left side never knew why. Over time left side was bad my dr was not in tune
with crohns she is a PA. I read about all the unusual tests crohns buddies have and never heard of. She sets me back and I dont get good care of drs here in sonoma county, The best are on better plans or moved have medi-cal now.
misdiagnoised kidney cancer 2016 partial removal Left side!. xray showed bad hernia in umbilical area also .Had surgeries apart2018 -crohns bilical area removed. ln 2019 another hernia mesh inserted,Dr said if you find fistula referral to me will fix it. My spine is shot bottom end crushed disc and generative.Neck pain comes and goes. my legs tingle and burn rub alot indicates trouble in gut !! Have v viens but drs wont work on them painful at time when a flare starts.
Before covid 2020 round got bad found a dr and referred to s fran area find remove fistula colostomy stoma and fix prolapse I knew down the lane a bag would come in my life possible better quality but I did go in my 40s 1990s to a support group s county area and most were happy - they got less crohns problems . i did read on some forums the change to remove stoma bag and surgery removal regrets it.
Also the county medi-cal fought for me, but the other establishment turned me down setback again. March 2021 found fistula.surgery was
planned SEPT 13 2021 but alas not got the surgery that surgeon spoke of. Was to be a as follows - laparotomy exploratory possible intestinal resection possible stoma formation. He had no gyno dr they did not belly cut, he removed only the adhesions omentum pulled up? found a hernia belly button area repaired. Dr said no fistula?? He left deseased ovary in left pain all the time now removed adhesions around ovary now hurts i told him of the ovary to remove it if needed. Nurses were puzzled my room gone 14 days stay gone had roller walker gone -art was working with ostomy nurse on phone set up home care ALL was covered by medi-cal ! never used any services. there was a box at home -waiting for me all beautiful expensive colostomy underwear lacey things still had tags on, 9 pair i told the nurse what happen keep the under wear, opened box not accepted they are sending me the stroller with seat with brakes YOU deserve it waiting for nurse who clears medical supplies went out of town.
i need it my health is dropping again. Update i forgot to mention sept 5 went to er abdominal distress left side again, novato calif chest pain? not heart attack and headache with neck pain told me covid side effects high blood pressure to some and stiff joints. went home. They gave me the paper what next the whole precedure that will be done on sept 13th surgeon does not know of this paperwork given to me.
After the surgery FELT WORSE *legs tingling and burning neck pain* like the time of fistula in the 90s called dr he said you had catheter in take some tylenol, that BAD DR-off limits no tylenol type will choke and sufficate die and any cillin does it to me also. Was floored art says lucky you know not to take, he did not look what you are allergic to.
The day of sept 17 went to er petaluma was so ill had my new cane used.got there at 10 am see 8 pm was a busy er.
art went home call me for ride home.Same* symptom from sept 5 now middle of oblique/abdomis area feel like im being crushed breast bone intense pain?
next day went to records got everything to compare from surgeon day and er visits. fyi feeling nausea run-threw up run again vomit not sure belly is real sick feeling large intestine left side again feeling bad right side large intestine now feeling it
Continue on-exray shows bowel mesentery area large intestine area portions of the left hemicolon are under distended limiting evaluation for mural thickening
scattered colonic divertic diverticula
abdominal area small amount of deep soft tissue gas overly right rectus abdomis muscles of uncertain etiology
portions of the colon undistended
This was found on friday sept 17th was diagnosed with diver issues with crohns disease when i was 12 year of 1970 mum said no surgery too young much responsibility for stoma bag issues
They said-need new dr they called medi-cal during day got one will see soon S rosa internal medicine gastro crohns specialist,
they said everything looks ok, but the paper said reason for visit colitis? ab pain.
gave me morphine iv feel real good no pain and smiling they said ex ray and cat need to do for you.
The dr in charge was great came to see me in lobby he said i know your surgeon odd what he did to you. well hope to get answers soon calling friday for referral hate the body pain
My goal in life is to get better im relocating if all goes well to monterey im a professional chocolatier want my own store. i see in a nut shell possible colostomy if left colon is bad im in pain and hate the radiating pain in body i stay up 3 am on left lower abd pain and side pain swelling in the backside always. could it be my large colon ? im ready if they want surgery oh by the way medi-cal has sent accepting letter on colon removal of small intestines good till march 2022 . office said original surgeon needs to do it. if new dr puts in referral may not do surgery but i will let the new dr know im afraid of bodly harm due to the wrong RX treatment for pain manage and possible knowledge of what surgery was to be preformed also laporatomy and stoma surgery.
hope you are good coping till new dr
Ramona
......yes it kills me but it's worth it lol
