whats the alternative

hi to everyone!

as most people who are new post on here i've been reading for the past couple of months and love how you guys are so positive and supportive with your replys. I will try to sum up whats up with me and any suggestions feedback or opinions are greatly appreciated!!!!! I am a 32 yr old stay at home mom, after giving birth to my second child in nov '09 i came home from the hospital with issues going to the bathroom i intermittantly have bowel movements all day and they take a while does not come down easy so in the bathroom 20 min a pop like 10-15 times a day really hard with toddler and baby thought it might be hemorrhoids had them since i was 21 well before children and they were bad after giving birth this time!!! had hemorrhoidectomy and rectocele repair rectally, and rectocele didnt hold then had defocography test showed no issue except very slow evacuation like muscle issues then went to pelvic floor clinic and had all the test they offer showed paradoxical contraction which alomost everybody has even people without issues. had several biofeedback sessions do the exercises great! I have always been a healthy person with a great diet tons of fiber and water and such, always exercised so the nurse keeps trying to tweek my diet which just ticks me off i consider myself to be pretty inteligent and well informed if my diet was just the issue y didn't i think of that!!!!!!!!!!!!!! all this time i'm complaining of cramps on my left side and lots of mucus discharge so she sends me to gi head guy at ucsf in ca great he thinks i have small intestinal bacterial overgrowth so goes round of antibiotics and puts me on align it does nothing makes things worse actually and then he thinks its nerve damage of some sort puts me on nerve meds this guy spends like 5min with me because its teaching hospital and his dr's in the fellowship program come in and do all the talking and alot of info is missed or miscommunicated so this goes on for awhile and i contiue to go to bio and all the time racking up more out of pocket expenses even though i'm blessed to have great ins.!! so i keep complaining of cramps and bloating so I have pelvic mri and dr calls and says to continue on meds and refers me to alternative med dr at ucsf campus because he thinks its all stress and in my head so i go there see this dr and eventually this dr says i think its physical and i cant help. so comes july one morning i wake up in cramps and run to the bathroom barely made it and had a blowout of mucus and blood so i get a colonoscopy and low and behold I have moderate ulcertive colitis well now start lialda and things seem a little improved except multiple intermittant bowel movements dont stop at this point i kinda gave up and just dealt with it so some months later i decide to look into getting my rectocele repaired by urogyno and he finds by barium xray i have redundant sigmoid so i have my rectocele repaired and just a the little sagging of my bladder repaired and my sigmoid resected everything went great healed up way ahead of schedule and was only in hospital for 3days and had all this done open abdo. but it didnt fix it either!!!! gi never explained much on uc and after some research found out had some very classic signs and after reading mri report that radiologist stated diffuse wall thickening like in ibd gi dr never mentioned!!! he really didnt pay much attention to me!!! well i am the end of my rope i dont even have enough to hang myself with my daughter on the way to school last week says to me mommy u have to have a doctor fix you so we can go to the beach this summer my heart sank it hurt so much that she said that!!! my children are so affected, i am housebound most days because of the bathroom i struggle to go some places but cant go on road trips, school field trips and when i do try going places i cant ever make it anywhere on time EVER!! have to go to the bathroom a gazillion times first, going to dr's appt's means I have to eat practically nothing the day before so I'm not going to the bathroom cause the more i eat the more i go!!!! so to much of the dr's guestimation i have some nerve muscle damage somewhere but there is no way to specifically test for this and laxatives and enemas which i cant even stand the thought of which though on dr's recommendations never worked still the same effect but amplified symptoms! so my son who is 16mo now has had the short end of the stick he only gets half the mom i used to be before all this my husband and children need me to be back physically!!!! I try not to let it mentally effect me but as most of you know its hard not to so on bad days if i snap at my kids i feel so wretched and guilty and it is physically exhausting going to the bathroom all the time!!and my bottom starts to get sore and the rest of the area follows (vagina) i know that my ailments are two fold the colitis which is not active right now and whatever else the dr's cant figure out but i dont want to chase surgeries and i'm done chasing trying to find out what is wrong with me so i want my colon out! I dont want 3,2 or even 1 more surgery that doesnt help!!!!!!!!! there have been days when i'm in the bathroom laying on the floor on my left side to help things move and saying i cant live like this another yr i know im young and the my urogyno said if it was him he'd take the multiple surgeries over the alternative. I probably might be a candidate for j pouch but cant even think about going through 3 or 2 more x's for surgery i cant! i am missing so much time, quality time with my kids it SUCKS and makes me cry often!!! so i want my colon out and I want an ileostomy I know this wont be a walk in the park but maybe I dont have to live in the bathroom anymore!!!! on days that arent bad well for my normal, would still be bad for the normal person i'm like i must be crazy thinking to have that surgery and on really bad days i want my bottom cut out of me no more pooping ever!!!!!!!!!!!!!!! pooping is on my mind all the time if i'm not in the bathroom i'm getting ready to go back in. AM I CRAZY TO WANT TO DO THIS?

WOW

Welcome to the forum...glad you've been reading! I would first find a GI that cares. I am a fan of teaching hospitals, I go to one myself, but there is a better doc...more attentive doc...there, I am sure!

I had a proctocolectomy with ileostomy because of my Crohn's diagnosis. A j-pouch was not an option. Have you thought about having 'step 1' towards j-pouch surgery? They would remove your colon and place an ileostomy. You could live with that for a long time before you had to make the next decision.

I am sure summerstorm will be along...she chose the permanent ileo route...for her UC treatment. I have a friend who's UC was diagnosed after the birth of her second child and she is just about 2 years into life with a j-pouch and is happy as a clam! But there are many, many stories of the choices we've made for quality of life!

Oh, and I am a mom, too, and my surgery was for my daughter...I want to cry thinking of the years I lost...but I took control, like you are, and now live a happy, healthy, active wonderful life. HANG IN THERE!

You are not crazy at all! Not being able to take care of my kids was a huge driving factor in my decision to have surgery. Right now I'm two weeks into recovery from my first surgery and it's tough because I'm not allowed to pick up my 8 month old, but I know that is temporary. Not having to worry about the bathroom is an amazing feeling and so far has made this all worth it to me.

If you decide to go ahead, I would suggest getting the colectomy and ileostomy and having them keep your rectal stump. This will give you time to make a final decision on the j-pouch while you are well. I only say this because you sound really distraught and it's a big decision. My surgeon told me I can keep this temp ileostomy for years before having the rest of the surgeries if that's the best timing for me and my family. Just something to think about. I hope you find some peace around whatever you decide.

Hey Sweetie.........you have certainly been through more than your share. My husband got this about 5 years ago which was 5 years after our mutual retirement.

He was lucky in many ways - he was in his late fifties, not working, not raising a family so coping with the disease was easier in a sense but still very debilitating and confining. I/we can't even imagine how so many of you try to deal and cope with this along with all your obligations that need your time and attention. After 5 years he had had enough and wanted to get back his life.

I can certainly understand your decision and think you are headed in the right direction. Since you are in such a bad state and your age you definitely need a GREAT colo rectal surgeon to see and discuss your various options. Even though only one surgery is all you can think about or handle at this time I do agree if you are a good candidate for the j-pouch to go with the one surgery and down the road when you are better, stronger and ready then go with the additional takedown surgery/surgeries. I wouldn't just out and out opt for a permanent ileostomy and have regrets later. Certainly take care of business and get your life back for you, your sanity, your children and hubby.

I'm so sorry you are having such a terrible time and can certainly relate having seen my husband suffer so terribly. As I said I can't even think if I had this and I had little ones so dependent on me too. That is understandably depressing and even tougher as family and friends try to understand but it isn't easy for them sometimes to truly understand the depth of your pain, suffering and emotional distress. People in general just don't really understand this horrible affliction.

Love and Hugs to you and keep us informed.......you've got a lot of great caring people here who will also chime in with advice for you. Take care!

An end ileo is reversible if you keep your rectum. This would be a better option than a temp ostomy if you plan on keeping for a long period of time. Talk to your CR surgeon about this option.

Sue

I agree with the others you sure arent crazy! I have a permanent ileostomy and had a proctocolectomy as well due to crohns/colitis and I couldnt be happier. this surgery has given me quality of life, although it did take me a good year to get my head around it as for me it was emergency surgery and even though I knew my disease was going to take my life without the op I still felt low. But not anymore, I can go anywhere and do anything I want without having to worry about having an accident and soiling myself which used to happen to me on a daily basis and I was what they called crohns crippled, cause I could not walk out my door, it was a nightmare. I really hope you get some relief soon, we all know what your going through, talk to a good CR Surgeon and take it from there. Keep us posted, take care
Doreen

Yes, there is a possibility that you will have to continue with UC meds if you keep your rectum.

Sue

I just had my surgery laparoscopically about six weeks ago. The incisions on my belly were so small, and are just scabs now, the stitches are gone. I'm having more trouble with the butt wound, but you wouldn't have that if you kept your rectum. I'm glad I had it lapro, definitely..... lots of potential complications with the abdominal wounds....but your surgeon does have to be experienced w/it, of course.

Run4pancakes, I was wondering how is the eating and output going and how changing the appliance is coming along?






Dee
Prov3:5,6

Lifeinterruped, the downside of lapro is that it takes longer.... mine was supposed to be 4-6 hours, and it ended up taking closer to 10 hours. Stressful for my partner, and some respiratory stuff from the anesthesia for a few days (also a blood clot in my hepatic vein). But my surgeon is awesome.... she said I had a really long colon and it was "tedious" to take it out that way..... but glad she stuck with it.

But for someone young, such as yourself, the tradeoff is worth it w/the recovery time.... it's only when the anesthesia and other things that go w/a long surgery are too risky that lapro is a bad idea.

Thank you for that info blueglass and run4pancakes I hope no more meds! My colon is not too long since I have already had my sigmoid out also my transverse hangs really low almost in my pelvic area, I think that may also contribute to the intermittent bms just my guess.....


Dee
Prov3:5,6

Oh thank you summerstorm for that because being a stay at home mom my life are my kids right now and I would give up anything for them so I'll give up my colon for they're quality of life ;-) thanks again!

If you keep your rectum and you have rectal disease, you may need to stay on UC meds. When you have the rectum removed and the jpouch built, your surgeon may strip your rectal cuff (called a mucosectomy) of he/she may not. Some surgeons do this, other less capable ones don't. My cuff was stripped and therefore I do not have UC of rectal cuff. Talk to your surgeon about his/her ability to perform this procedure.

Sue