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.


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Original Post

Love your screen name Momminator!

First off, those girls are so beautiful. Congratulations, even if it was yrs ago.


Ok, Your life sucks...badly. No joke...just plain unfair!!!! This is not right. This is not normal. You are entitled to whine, complain, cry and break down...Any normal person would have been a weepying ball of jelly yet you are still fighting and strong. Kudos to you.

As for the support from the home-front....I learned a long time ago that most guys (husbands?) do not get their wives...they give us the responsibilities and then wash their hands of it. We have the 'easy job' and they do not want to know the details....yes, we suck it up. Yes, we shut up. Yes, we cry in the shower.

It is not fair and it is wrong but the guys who do get it and support us are very rare...if you find one, then he is a keeper! (that goes for the wives of pouchers too...Rare to find anyone who doesn't have this disease who understands us)

Something happened to you, I agree but it may not be what you think. It may be the pregnancy hormones combined with the pouch etc that threw your body over the edge.

Have you spoken to your obsgyn about all of this? You may get better results from a hormone treatment than from all of the meds that they are giving you.

How long ago did all of this happen? How old are the girls? Because they tied your tubes you may never have thought about hormones and the pill but it could really help you.  I am not a doctor and not sure but it may be worth a try. 

My other thought is amino acids...they can be responsible for a lot of problems if they are unbalanced. Supplements may help as well...

Lastly, Yes, it may also be that they touched something when they were inside or had to cut and push some stuff around. 

No matter what, you have all of our support...talk, cry and share...keeping it to yourself only hurts you more.


You are stronger than you think. 

I would have collapsed long ago. 

In fact I did.  

Yes men can be..... Well... A-holes.  We are.  We don't... most of us don't have the attention span of a gnat.  Now... Guys here... I'm not getting on you.  We go through this to and stick it out.  But what you are going through is even hard to read.  I only went through a tenth of what you went through and had it removed!  I am fortunate I can wear an appliance without any problem.  It must be mind bending not to have that option.  

Sharon has alot of good points.  Keep coming back.  We do listen.  Men and women.  We keep each other going by getting it out here where there is no outlet for some. 

I see what has kept you going.  Twins.  

It's part of what kept me going.  Not twins.  But grandkids. 

Kids will keep you going.  They give and get the deepest love known.  



Awwww....well thanks both of you. (Sorry my writing and spelling has always been horrendous lol.) 

To clear up some of the stuff i missed ir was asked about....

as far as the belts...they never fit me I think because I've always been super tiny. infact i never maade it into the 5 footers club n got stuck at 4"10. (However my weight works with prednisone lapses....im usuaally never rail thin like most ppl get with this disease... i guess im more curveyish and the belts always cut into my hips or butt till i would litterally bleed (usually at night they wld bother me...I think I only went five nights that whole time w the bag and belt problem without leaking so it was misrable) orrr they fell off completely because i couldn't stand tightening them. I finally 8 months into it all made one of my own out of my dads old navy belt and gauze wraps lol. it seripusly worked better for me. Also i had 3 tots before j pouch I had them really young wich my mom always said(and I wiiish I cld say this in her voice cuz she is such a character and I'm really good at sounding just like her with her south Philly flair she has. ) "it was actually a good thing like a blessing in disguise." and "thank goodness you did have them bbys so young because if you didn't that pouch would have made you childless." WELL SUPRISE MOM! (besides...who wld be childless? I have lots of fur baby's I consider children. I never wld have been totally alone lol)As far as amino acids and supplements I have been thru alot of different sorts. I'm not good with vitamins and suplements because they usually irritate my stomach. i am on this powder stuff my dad sent me. (ill write it in here when i get up and make my next shake because i cnt remember the name) because I'm on this all raw juiced diet atm. I usually do take to this diet when I'm really sick and feel like I'm going to have a blockage...it really keeps me out of the e.r. but it takes a while to get u totally back to normies. i mean it's usually like a cpl weeks before I can eat Regular type solids again.wish I didn't love eatting food so much I'd stay on it all the time lol.as far as hormones it's funny u she'd say that cuz my mom always gripes about how she went thru menipause early early like 29ish....just seems to run in my family.she swears it's the hormones that make me so incredibly I'll lately. not the wounds from the pregnancy. That the pregnancy probably just kinda fast forwarded me into pre menopause...n now I'm like....in a war with my hormones. Wich makes sense cuz I do have barely any period for like 4 months then I'll have it outta the blue this past few years so I'm sure hormones are acting their part probably with the migraine headaches and some of the other odd problems I've been haveing. My Dr has me on so many different medicines for pain and crohnes that it feels like every visit I get something added.And I know hubby's and wives and just anyone you know Noone knows exactly what this disease is unless they lived it and we should just....ttake that into concideration but....my support systems less then that lol I mean I cld tell story's and write a freaking book about the horror show I experience daily lol. If not for my mom n my tots I'd probably runaway n hide in the dessert lol. Thanks guys for all the help.....im gonna bring up some of ur points to my Dr when I go back in a few Weeks.

So.....for now before i write a whole lot more (cuz trust me i can go on n on n onnnnn...) I'm signing out from my bed of chronsey sorrows as I like to call it lol....thanks for the advice!

My husband is the one with the j-pouch, I am just an observer in his journey. However, I do suffer from migraines.  I feel for you with all the other crap that you have to suffer through.  Have you tried acupuncture for them? That helps as well as beta-blockers.  Hang in there!  We are here for you!

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