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NEW TO CROHNS FORUM

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
 
There is a lot of spelling and punctuation and grammar issues with this.

Made it hard to read.

But sounds like you have had a bad time with your health.

You should also add what medication and diet you have had, and if that has contributed to any of the issues along your 50 years experience with crohns disease.
 
Hi western buddy,
Sorry for errors I'm used to public speaking. working on the computer is not my cup of tea. My diet is pretty boring soft egg bit of toast I do eat Cream of Rice no bacon or breakfast meat no chemical processed food. Calories about 900 to 1000 calories food is my enemy, so i eat what does not bother most all veggies I don't eat. A baked potato yes a bit of butter I eat good sour dough all other breads bother me. No sweets even though I do chocolate making I don't eat it.
Meat is a challenge a lean chicken breast i do like spaghetti with lean meatballs. My comfort is a little nacho with lean ground meat heat med. My down fall when in the mood no flare good onion rings A&W with BB Q sauce.
Red meat I liked at one time, my partner will cook a steak he will give me a small bite size chunk is about all I can handle the small Hiadel Hernia makes it hard for me to enjoy food.
My medication I take are simple over the years. Alot of the NEW ibd drugs caused massive side effects. I have Mesalamine 800 mg 1 a day if bad 2 x it really is one that works old school Chrohns med from the 1960s. For cramps and spasms- Hyoscyamine 0.125 mg four x a day.
Baclofen 10 mg spasm on Esophagus. 3 x a day. I was born in Cambridge a twin I have also my mum was born and raised in England. Came to Calif at 4 years. My dad was American/Indian met my mum in the war 1940s. Fish/ chips I like. My mum showed me how to do it original style for my partner. He loves that kind of food. I love and enjoy and make old school creations of truffle making Cordon Blue Master BAA Chocolatier from Belguin.1886 school.
I'm hoping this Gastro/Internist can get me back on track .I don't have in faith my p-care Dr she is nice -but no knowledge how or what to do. She is a pill rx filler a lot of drugs in month.
I dont use if they give me a side effect and does not help so I keep the basic ones filled. She knows nothing dear of IBD stuff! When I was told in 1970s of Crohns I had military Drs from my dad they really took care of me. Cant find a med for back and muscle pain- she gave me one and knocked me off my feet- Flexeril days to cope didnt like the zombie feeling.
Nice you connected. A snap of me don't like photos of me not photogenic. A view of chocolate french truffles.
Ramona
 

Attachments

Oh wow you have a real talent with the chocolate making they look like they have come from a premium chocolate gift box.

Yes there are a few people about taking just Mesalamine for many years with success.

New drugs are on the horizon, hopefully they are much more effective with much less side effects, we can then all eat much more food without it being our "enemy"

I can't eat traditional English fish and chips that would really mess me up, my crohns would be angry with it lol.

Your able to pick where you live, usa or uk I guess as you were born in the uk your free move back any time you wish.



I think it's not as popular now, Indian restaurant are far more popular than fish and chips.

I'm not sure what a modern day milatary doctor would be like.

Doctors used to come to your house anytime you wish in the uk maybe 1995 that stopped.
 
WB,
Thanks for the feedback on my confections 4 years talent.
I have not been back to UK left when I was 4. My father was Native American choctaw he was a windtalker coded messages and also taught how the tucks from the islands how to fight. He was a great dad lost him when i was 12 years old. My dad taught me how to do sand paintings speak choctraw and I do very complicated Indian beadwork wrote 2 books how to do kinda books many years ago my 20s.
My dear brother is a vietnam veteran 101st airborne survivor he is 71. Trump did made it better for them they can GO to any DR PAID in full by VA. He is having renal failure dyalasis?forgot how to spell it.. Hes doing better He lives in Willits up north. You know whats happening now -- very bad pain in pelvic as i type.
air possible THE FISTULA? the dr said was not there! Air down groin pain tunneling to and Urethra area.. Should I try to call wed at the new dr get appt they just did the referral Friday? last 2 days ago felt like air or nerve pain in my body traveling with pain in legs and forearm to neck pain very arthritic these days.
Well going to watch a movie or something with warm compress on bladder Blood hell WB.
closing...
 
We need a chocolatier in Seaside Oregon move here.....I miss my good sea foam :)......yes it kills me but it's worth it lol
GI jane I know good chocolate will upset us thanks for the input Are you a military gal good for you! if by chance i do get to monterey on the cuuf chocolate for you ok?
mona
 

Honey

Moderator
Staff member
Hi Monet Janet,
you certainly have had a long and difficult journey with you health issues. I had many years of uncertainty, reaction to meds etc and worries too so I feel for you. Eventually meds that are keeping my Crohns symptoms stable, were found. So I wish you well again soon. No two people are the same in their response to treatments for this illness. Get well soon.
 
GI jane I know good chocolate will upset us thanks for the input Are you a military gal good for you! if by chance i do get to monterey on the cuuf chocolate for you ok?
mona
I seem to finally have my Vedolizumab working took 8 months and liquid diets and prayer :). Yep I can handle little amounts of sweets. Like a few chocolate chips in my oatmeal with morning. Take care.
 
Hi Monet Janet,
you certainly have had a long and difficult journey with you health issues. I had many years of uncertainty, reaction to meds etc and worries too so I feel for you. Eventually meds that are keeping my Crohns symptoms stable, were found. So I wish you well again soon. No two people are the same in their response to treatments for this illness. Get well soon.
Thank you for the support my Dr put in a referral for gastro/internal Dr was found by ER Dr. My Dr is not a real Dr she is a PA. My insurance company will get me a new one that knows how to care of my issues. She just gives me RX and just does not work for me 50+over the years on meds. My sister twin finally said get your small intestines out she has crohns and colostomy bag never looked back doing life better than ever. My past surgeon was a dope, but my medical insurance sent me a letter came on the 10th but got on the 13th day of surgery in PM time from next door apt sent to wrong mailbox.
It had approved colostomy and small intestine removal is still good for 6 months. Hope this new Dr can help with that. The old surgeon is supposed to do it the insurance company told me when I called about it, but I'm afraid of him now, he told me to take a med that would have kill me suffocate my windpipe he never looked at my profile. I Had a red tag for allergic meds not to administer on medical bracelet in hospital.
Also he never told me of other procedure he did, such pain in stomach area. I went to get records at hospital-found out he removed some the stomach omentum casing lining of small intestines and removed edhesions. He then pulled it up now real problems of pain if too much food. This was a unsaid procedure to me. My sister has 2 meds out of 20 daily. If I explain this new Dr of uncertain uncomfortable feeling of don't feel safe with the old surgeon he could possibly let the insurance company know what took place.
Well hope your day is good, thank you for the support will let you know of progress, making a new truffle today hav'nt made since my chocolate school days in the 70s its called 'The Cartier' with 100% gold edible leaf as garnish.
MONA
 

Honey

Moderator
Staff member
Sounds yummy! I hope you get good care now,and start to feel better soon.I know it does take time to diagnose Crohns and find the right treatment that suits you! I have gone through all that.
Get well soon.
 
Sounds yummy! I hope you get good care now,and start to feel better soon.I know it does take time to diagnose Crohns and find the right treatment that suits you! I have gone through all that.
Get well soon.
Miss honey,
I have had the blasted Crohns Disease since age 12, 2 fistulas and 8 miscarragies it- killed my babies all were twins, but have a girl 39 and good! got pregnant on pill !!!
Mona
 

Honey

Moderator
Staff member
Miss honey,
I have had the blasted Crohns Disease since age 12, 2 fistulas and 8 miscarragies it- killed my babies all were twins, but have a girl 39 and good! got pregnant on pill !!!
Mona
So sorry, you have had such a trying time! It is good news to hear of your lovely daughter,a blessing to you!
I try to deal with the present,it is more than enough to deal with. Life with Crohns isn't easy though. Take good care of yourself.
 
So sorry, you have had such a trying time! It is good news to hear of your lovely daughter,a blessing to you!
I try to deal with the present,it is more than enough to deal with. Life with Crohns isn't easy though. Take good care of yourself.
my goal get treated and MOVE to Monterey bay want to open a french chocolate shop. You know things are going to get better i feel it and want this so bad i will heal and be happy with my life of 63 years now!
m
 
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