Hello. This is my first post so im just kinda telling my story and asking for advice on any one w similar issues.(im not really one for the community sharing thing until lately.(kinda the suffer in silence type) but I sorta need help even if it's just support with this sickness....im so over it all.
I had uc since I was a pretty young kid. Not bad uc really. I had maybe two or three big flairs a year almost was like i had nothing at all really because i was kind of a tough kid and let things run off my back. That was until my late teens and I was literally so sick i had to leave school for a year and became pretty much bedridden. I finally had my j pouch surgery in 2001 because I couldn't stop a flair I literally had for three years strait. (Three years and many er visits, long stays in creepy hospital rooms, and blood transfusions later.) So I had a GREAT surgeon aand my healing was long .....but honestly great once my j pouch was officially hooked up. (the WHOLE bag experience was terrible for me. I had mine for a year and from it I had total skin breakdown around the wafer, just total depression, nothing fit me right (tried aaalllll the sizes and shapes and eventually I just made this terrible belt BECAUSE nothing fit me right...not even the premade belts), I leaked aallllllll the time and I was constantly running outta supplies and needing to buy them out of pocket wich was EXPENCIVE! Soooo after the bag days were over and I healed properly....OMG....I forgot what it was like to live normally. I felt AMAZING.i went 9 1/2 years of pure bliss even almost had regular movements. About 6 times a day that I could litt time when I'd need a bathroom. life was good. Them in 2010....I got pregnant. I knew before I was even late something was up. I started getting problems like less then a month of getting prego. Then I found out after a dr visits tests for what we thought may have been a flair the I was expecting. Thennnn I was doubly shocked when I found out I was haveing....DEN DEN DENNNN... TWINS....WITH A J-POUCH! I freaked. I was sooo scared.i was assured it will be okay but it hasn't been....not a single day since. After the birth a planned c-section it took almost 5 months for all my crap to heal. It was horrible. The pain was not normal from all ive read in books,online and of course my own previous natural pregnancys before my pouch. *Sigh* most ppl are good after a cpl days....not me....I gotta be special. Anyhoo I just wld slap myself together best I cld n drag through my days. (Didn't much care about the trying to be strong n look happy while feeling crappy anymore. That sweet thing all of us w this disease do to make others feel better....no I looked, acted AND felt like butt!) I was always going to the e.r. always sick, hurting, crying, depression, butt burn again wich i havent had in yeaars, getting blockages and pouchitis even had hairloss and fibromyalgia associated with my pouch. Yikes is not strong enough for the laymens. I have had HELL IN A POUCH ever since I had twins. recently well like a few years back I got very ill. As usual i kept pushing thru the illness because I feel like im being whiney or wimpy if I complain. (Total headcase mixed with no support system at home) but I kept going until i passed out on the floor one day from this sharp pain in my belly that litt made me think i was stabbed from behind and just this...deathly feeling along with it i had for so long. Turned out I had another blockage along with pouchitis and double freaking pneumonia. I was really really sickly.i was hospitalized over a month! so when I got my tests back after aallllllll of them were taken...turned out....I have chrones! Yay....ive moved to the bigtime! Chrones, stomach ulcers and ahesions all over the place everywhere. ughhhhh...whhhhy me. So yeah ive been in a tail spin of trying meds, trying diff diets, diff pain options, the depression from nothing working, 20-25 movements sometimes a day not includeing during sleep, and just plain crying in the shower for a long time. crap got more wonderful about 9 months ago. I developed a whooping type cough I Cnt get freaking rid of. ...a cough with chrones......double yay. I've also been diagnosed with fibromyalgia, and these things called cluster migraines wich I never even heard of before as well. The migrains just recently staarted and omg they are hellish. I litt went about two days in my bed hideing from light and sound wondering if just killing myself wld be better then this sick life im leading. I snapped out of that pretty fast since im not the woes me type. Anyhoo this is my personal experience with this disease...aand it aallllllll went downhill after I had my girls. My Dr won't say yeah its from the pregnancy or the c section but come on....i was living normally with my surgery before. And i dnt think its totally normies that it took the drs. an hour for them to tie my tubes. It took so long my meds wore off and I started feeling it all and needed to be givin more meds. They said my insides were a "mess" n they had noooo clue how i even got pregnant. Uhm wow thaanks doc. Ive read other haveing pouches and haveing a dream birth and healthy after life. I dont know why i seem to keep getting worse w new crap staacking ontop. But either way with all these new problems I have it will be good to talk to ppl who get what im going thru. My husband dont he treats me like i should take a pain killer and move on. That crap dont live here anymore im to the point of exhaustion and im litt sick of being sick. im glad I joined this and I look forward to talking to everyone. i already saw alot of topics I wanna jump into.