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lifeinterrupted
Regular Member


Date Joined Mar 2011
Total Posts : 103
   Posted 4/4/2011 11:12 PM (GMT -6)   
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!!!! shakehead shakehead shakehead 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 shakehead 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?

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 4/5/2011 4:41 AM (GMT -6)   
YOu are absolutely not crazy. I know surgery seems SO daunting, and it is a major surgery, but honestly, if you'll read around on here you can see that we are, as a whole, very happy about this decision and would not go back.

I don't have kids so I can't tell you what the recovery would be like as far as that, but I can tell you that if you're missing out on quality time now, just imagine what will happen after the surgery...it'll be 100% different. Most of the moms on here had the surgery for that reason.

I'm sure you'll get more replies but I just wanted to say I don't think you're crazy at all! I think it's brave and smart. :)
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/5/2011 4:58 AM (GMT -6)   
WOW sad

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!
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

frostyboy
Regular Member


Date Joined Mar 2011
Total Posts : 272
   Posted 4/5/2011 5:01 AM (GMT -6)   
lifeinterrupted,
dito, you are not crazy.  Now, I have the opposite problem compared to you.  I never go, have a hard time passing gas, and bloat on about everything I eat, but I feel the absolute same way.  I feel my life as been put on hold on soo many things at the moment as well.  I would love to continue my education right now, find another job, etc.  Also, I totally agree with the snapping on people.  Like last night, I had a huge headached, felt nauseous, and I am very tired of just wanting to cry, and be in my own little world.  I want a happy, go-lucky me that can enjoy life! 
 
26 years old
2009-Diagnoised with IBS
2010-Confirmed Colon inertia with transit study
2/03/11-Laprascopic left hemicolectomy to remove a kink in colon by local surgeon
Now have a stricture (believe I am having more problems that just related to the stricture)
4/11/11-Schedule to see a Colo-rectal surgeon finally

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 4/5/2011 6:11 AM (GMT -6)   
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.
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Steps 2 & 3 TBD
http://life-takes-guts.blogspot.com/

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 4/5/2011 6:22 AM (GMT -6)   
Welcome to the forum. You have been through a lot.

Have you seen an IBD specialist? One thing I didn't understand when I first was diagnosed is that there are GI subspecialties, and if you have UC, you really need to see an IBD specialist -- mine knows so much more than my original gi doc (and he is at a teaching hospital). I also definitely agree with Equestrian Mom to find a gi doc who cares. Not saying you should go this route, but there are a lot of drugs out there beyond lialda, which is weak and only works if you have mild disease.

A lot of us on this list had bad experiences with drugs and often wish we stopped trying drugs earlier and just had the surgery. But they do work for a lot of people, and I know people who've had really bad episodes and then been in remission for ten years on the right meds.

Hang in. You're definitely not crazy for wanting to feel better and be able to pay more attention to your kids.
48 years old, female.
2004 dx indeterminate colitis. Many drugs, minimal success.
2010-11 Official dx Crohn's colitis. Crazy complications -- cutaneous Crohn's, Erythema Nodosum, marginal keratitis, high fevers. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 4/5/2011 6:53 AM (GMT -6)   
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!
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

lifeinterrupted
Regular Member


Date Joined Mar 2011
Total Posts : 103
   Posted 4/5/2011 8:54 AM (GMT -6)   
Thank you all for your caring and understanding replies! :-) I have a colorectal appt at. The end of this month I did think about having my colon removed and leaving my rectum waiting some years as I might change my mind about the j pouch but i've read that a loop ileo Is more difficult to manage? If I get an end ileo is it absolutely not reversible?






Dee


Prov.3:5,6

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/5/2011 8:56 AM (GMT -6)   
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

lifeinterrupted
Regular Member


Date Joined Mar 2011
Total Posts : 103
   Posted 4/5/2011 9:07 AM (GMT -6)   
Thanks sue ;-) I think that is the route I want to take! That will at least take it off my mind for a couple of years... My other question is part of my colitis is in my rectum if I keep it will I have to keep up on meds?





Dee
Prov3:5,6

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 4/5/2011 9:21 AM (GMT -6)   
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

lifeinterrupted
Regular Member


Date Joined Mar 2011
Total Posts : 103
   Posted 4/5/2011 9:37 AM (GMT -6)   
Thank you Doreen, I'm wondering did many of u have it done lapo?







Dee
Prov3:5,6

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/5/2011 9:45 AM (GMT -6)   
Yes, there is a possibility that you will have to continue with UC meds if you keep your rectum.

Sue

lifeinterrupted
Regular Member


Date Joined Mar 2011
Total Posts : 103
   Posted 4/5/2011 9:53 AM (GMT -6)   
Is that the case if I eventually get the j pouch cause they remove and strip right it ?






Dee
Prov3:5,6

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 4/5/2011 9:55 AM (GMT -6)   
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.
48 years old, female.
2004 dx indeterminate colitis. Many drugs, minimal success.
2010-11 Official dx Crohn's colitis. Crazy complications -- cutaneous Crohn's, Erythema Nodosum, marginal keratitis, high fevers. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

lifeinterrupted
Regular Member


Date Joined Mar 2011
Total Posts : 103
   Posted 4/5/2011 10:10 AM (GMT -6)   
Thank You blueglass, my urogynocologist recommended this Colorectal and has worked with him on other cases and said his lapro skills are exceptional! So I trust him and really do pray that that is the case!





Dee
Prov3:5,6

lifeinterrupted
Regular Member


Date Joined Mar 2011
Total Posts : 103
   Posted 4/5/2011 10:13 AM (GMT -6)   
Run4pancakes, I was wondering how is the eating and output going and how changing the appliance is coming along?






Dee
Prov3:5,6

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 4/5/2011 12:42 PM (GMT -6)   
Hey, Dee...I left you a post on that other thread about the output and stuff.

I was going to say that I do not have to take any meds due to keeping my rectum. My understanding is the lining has been removed which is where the UC was so I shouldn't need any. Definitely talk to the CR surgeon about this because I think there are some situations where it would be needed, but I don't know what they are. I am currently on 15 mg of Prednisone as part of my final taper, and then I'm done with meds.
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Steps 2 & 3 TBD
http://life-takes-guts.blogspot.com/

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 4/5/2011 12:43 PM (GMT -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.
48 years old, female.
2004 dx indeterminate colitis. Many drugs, minimal success.
2010-11 Official dx Crohn's colitis. Crazy complications -- cutaneous Crohn's, Erythema Nodosum, marginal keratitis, high fevers. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

lifeinterrupted
Regular Member


Date Joined Mar 2011
Total Posts : 103
   Posted 4/5/2011 1:18 PM (GMT -6)   
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

lifeinterrupted
Regular Member


Date Joined Mar 2011
Total Posts : 103
   Posted 4/5/2011 1:18 PM (GMT -6)   
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

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/5/2011 8:46 PM (GMT -6)   
Dee
you are totally not crazy and i know exactly where you are coming from!
I had UC when my son was born and he spent the first two years of his life playing in the bathroom, he had a whole drawer full of toys, he had those crayons to write on the shower walls, and he colored those. When he was a tiny baby, he sat in the bathroom in his bouncy seat. That wasn't fair to him.
My final straw came at the beach, the first time we had taken him where he was old enough to enjoy it and walk in the ocean and i was in the beach house, waiting to be able to go out. And i remember, very vividly, standing in the kitchen of that beach house, thinking, this is it, i'm done i've had it, uc has taken enough from me, and more importantly from him. i'm getting it out, i'm getting my life back.
I didn't choose a jpouch, i chose a perm ileo, because i didn't want another surgery, i wanted it over and done. i wanted to be able to be with my son.
Like you i wanted to do field trips, i wanted to go to teeball, i wanted to sit in car line.
It was hard, the first six weeks after surgery, when you aren't allowed to lift and such, my son lived with my grandma, my husband worked 4 days, third shift, so he was basically unable to help much. and he wasn't that far away, only about a mile away so i dealt. I was 29 when i had surgery, i am coming up on my 4 year new bday april 17th and while there are hard times, rarely, but there are, i get through them, i go in the bathroom and i look at the crayon on the shower walls, and i remember WHY i have this bag, and i remember all i was missing and all i was losing out on, and i'm good, i'm happy!
So, be worried, be scared, be upset over the craziest things, but don't think you are crazy for wanting your life back, and don't ever think you are giving up! because surgery is the ultimate win!
good luck!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

lifeinterrupted
Regular Member


Date Joined Mar 2011
Total Posts : 103
   Posted 4/5/2011 9:12 PM (GMT -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!
Dee
dx with uc July '10
Current on going undiagnosed bowel disorder

Prov3:5,6

Post Edited (lifeinterrupted) : 4/5/2011 9:34:01 PM (GMT-6)


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 4/6/2011 9:03 AM (GMT -6)   
Hey Dee,
My surgery was done lapro, its amazing what they can do through such small incisions. I barely have any scarring from the ileostomy surgery. I was so happy with my CR Surgeon he did a wonderful job. Take care
Doreen

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/6/2011 9:14 AM (GMT -6)   
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
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