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Gottagonow
New Member


Date Joined Nov 2007
Total Posts : 11
   Posted 11/3/2007 5:25 PM (GMT -7)   
Hi I'm new to this group, I've had UC for about 5 years, and it is coming to the point I can't stand it any more.  I have a consultation with a surgeon in a couple of days.  Does anyone know or has anyone had surgery?? Susan

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/3/2007 8:04 PM (GMT -7)   
we have all had surgery, and most of us are very happy with our decisons. I had UC for 8 years before i had my surgery, i have a permanent ileo, and i think it's great. I don't know exactly what you are going through, but i know that i was tired of wasting my life in the batrhoom, and tired of hurting and taking all those meds! anyway, if you go with the ileo, you will be able to do all the things you do now, and you will still be able to wear your clothes, and noone will know unless you tell them.
Check out my post called "can you tell"
anyway, we all answers questions, so ask away

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/3/2007 10:32 PM (GMT -7)   
Gottago,

Your post is very vague--- please tell us more about you! Like summer said, nearly all ofus have had surgery here. Are you expecting to have an ostomy? Is this your first surgery? Did your GI doc refer you to a surgeon and did he say why? What kind of meds have you taken?
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Gottagonow
New Member


Date Joined Nov 2007
Total Posts : 11
   Posted 11/4/2007 5:50 AM (GMT -7)   
Sorry for being vague... I'm 37 years old and I'm very new to all the lingo and am not sure what/how to write it all down, and how to gather my thoughts. 
I was first diagnosed with UC in 03 during my last healthy pregnancy. (Hayden was born healthy August 21)  That is when I was actually diagnosed but I have always had issues, i can even remember as a child, nervous stomach, diarrhea always needing to go.  So since 03 I have taken many drugs (too many for my liking-I don't like to take anything especially if it doesn't help! And nothing was!)  Prednisone,Asacol, Rowasa enemas, Remicade and as things progressed I tried other alternitives, the natural approach Flax,Proteolytic enzymes, Acidophilis L-Glutamine.  I tried changing my eating habits, drinking more water, drinking less water, excercising, All the while feeling more and more out of control.
 Since Hayden's birth, I have had two unhealthy pregnancies.  Jeb was born too early at 18 weeks gestation Nov. 22 2005 and then Mattew, born 20 weeks gestation Feb. 21 2007.  I also have two other healthy children; Steven is almost 10 and Ava is 5.  Both are/were healthy pregnancies and babies, now children. 
As far as how things are for me, much like I have been reading on all of your chats, miserable!  I am just so tired of having being afraid of leaving the house.  So many times I just find ways/excuses to stay home.  That's the only place I feel comfortable.  I do try to live a regular life, for my children and my husband, but all the while I'm thinking where is the bathroom and do I have everything I need to clean-up with?  I have had accidents in every place imaginable.  I just can't control myself what so ever.  I am most humilated when I have to have my children hide their eyes while I clean myself up.  I don't think I'm alone in what I'm saying!  Actually, reading through all of your messages/chats let's me know that I'm not alone.  I hate to talk to my husband (he always listens when i break down, and i know he does his best to be supportive but it doesn't leave you with the most romantic feelings I suppose...) It even affects our sex life! 
Like I said before i don't like to take meds, but I have always tried and followed what my GI told me to do. And I was even thinking foolishly, that I could handle it myself and trick my body into behaving, I've been humbled into submision.  Surgery is my next step.  I don't even know what/when/how.  I've been reading and trying to understand the types, and what is expected.  My GI Dr. has refered me to a Surgeon at the Cleveland Clinic, we meet this Wed.  One question that my GI always asks is are you experiencing diarrhea?  I have it every day all day long all the time!  It's never anything other than a loose uncontrollable mess.  I'm never constapated until two weeks ago...... 
 I have not had difficult pain other than cramps and feeling somewhat uncomfortable but this paticular day I was doubled over in pain.  I lost my appitite and didn't eat for a week and bleed throughout that week.  My GI was out of town and i was told to go to the ER but I just held out until he was back and went to him.  He put me on an antibiotic and back on Asacol.  The pain was different for me and to be constpated for 8 hours was very difficult.  Usually I go to the bathroom 15 plus times a day.  I never feel full, always going approx. 5 to 10 min after I eat.  And now since I had this last episode I have had pain after I eat.  I'm tired all the time ( I always chalked it up to pregnancies/having kids).  But it hasn't let up.  My UC has just about consumed me!
I want to get my life back, and to be "normal"  not to wear depends, isn't funny, I prefer the Poise.  My Hayden pulled one out of my purse one day and announced to everyone within earshot that "My mommy wears pull-ups!"  I just smiled with pride! 
So, I'm off to the Surgeon to get some answers and to see if this is for me.  After I've spent some time reading thorough all of your thoughts I'm hoping it is for me.  I'm tough, i expect pain, as long as i get to "normal!!!!
 
And I/we would like to try again at another baby.  (We haven't discovered why we lost the babies?  Does anyone know ANYTHING about if there is a connection?  All I know is I should be remission when we conceive.)
 
Any/all thougts would be apperciated!
Thank you!
Susan

Gottagonow
New Member


Date Joined Nov 2007
Total Posts : 11
   Posted 11/4/2007 1:35 PM (GMT -7)   
Just an add on,
I was also diagnosed with Thrombophila (blood clotting disorter) with this last pregnancy. Apparently, I have had it since my birth and never knew of it. My GI Dr. said it can be connected to the UC.??
I have developed anemia and have been on iron for the last 8mths.....I thought taking such a high dose of iron might slow things up a bit but not a chance!
The UC affects my complete colon, Pancolitis. And I don't have anyone in my family with the UC diagnoses.

Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 11/4/2007 1:48 PM (GMT -7)   
Sounds just like the way i was. Well, except for the giving birth part. Took all those meds, did everything i could and still ended up with surgery. Docs always told me surgery was the LAST option. Knowing what i do now i wish it had been the first. The meds did more damage to me than the actual disease. The ostomy is MUCH better than the way i was before. Planning everything around where the nearest bathroom was. And like you, not really wanting to leave the house.

I'm happy i had the surgery. I wish i had it sooner.
 
Crohn's for what seems like forever
Bagged in August 2006
 
We cheer for 2 teams. The Red Sox and whoever is
playing the Yankees.
 WORLD CHAMPIONS 2007


Bluz4Greeny
Regular Member


Date Joined Oct 2007
Total Posts : 60
   Posted 11/4/2007 1:53 PM (GMT -7)   
Gottagonow, welcome! I'm very sorry to hear what you are going through, as you know so far many of us have experienced what is happening to you, and we have had surgeries.Alls I can say is that everyone here is great and will listen and even give great support. I hope everything works out for you and keep us posted on how things are going. Do you know if you need surgery? Bluz :-)
Illnesses; crohns, ulcerative colitis, ibs, barretts, gerd hiatal hernia, acid reflux, May8, 2007 lost my entire large intestine due to crohns, obstuction, and an abcess


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/4/2007 1:55 PM (GMT -7)   
If you're going to see a surgeon at Cleveland Clinic, you're in good hands. One of the premier hospitals in ostomy surgery.

I would see what the surgeon says, and ask questions from there. I think, judging by your posts, the first thing I would ask is if surgery would be safe considering your blood disorder. If they think it's workable, then ask about the different types of surgery.

The best thing for you to know is that surgery can be a "cure" for Ulcerative Colitis. The "cure" would mean a complete colectomy, from your anus to your small colon. It's doable, and there are a lot of people on here who have gone through it and now lead full, happy lives.

Good luck, keep us posted on what the surgeon says and good luck no matter what you decide.
Judy
49 years old, Crohn's Disease   
Six resection surgeries, permanent ostomy, adverse reactions to Remicadeback on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 


Gottagonow
New Member


Date Joined Nov 2007
Total Posts : 11
   Posted 11/4/2007 2:57 PM (GMT -7)   
Surgery is where I'm headed. I know I need to get all the info and then decide. I'm reading "years of meds, that did more damage" and "wish I did it sooner" and I'm thinking about all of my difficulties, on a daily basis. Surgery seems like a solution to my otherwise miserable life with UC. I am willing to deal with what ever modifications I have to, to get back to some kind of normal life. I just want to live spontainiously!!!! And not be afraid. I know that at this point it is consuming me completely. I live in a small, carefully controlled space. And it affecte my whole family!
I know I can do this.......I need something to work on. I need to be activly participating in my health and well being. My UC has control now and I want it back! WOW! I feel pretty strongly!
And yes, my GI Dr. supports me and is who refered me to a surgeon. I called Cleveland Clinic and got an appointment for Jan. 7, he called and got it moved it up to Nov. 7. We'll see.....

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/4/2007 4:27 PM (GMT -7)   
Hello Gotta,

I absolutely agree with Judy about Cleveland Clinic. That is where I had my surgeries done. They are a huge facility, but they KNOW their stuff. Dr. Victor Fazio was my surgeon back in the 80's at CCF. I think I could safely say they probably do more GI surgeries inside of a month than some hospitals do in a year! As with any specialized facility I'm sure. Be sure to write down your questions so you don't forget to ask them. You may want to have someone go with you just to take notes. That is really, really helpful. I am glad your GI was able to get your appt moved up for you. The best preparation I can suggest for your visit is maybe learn a bit about your GI tract physiology so you can understand the surgeon's "lingo" a little better.

Good Luck and keep up posted,
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/4/2007 8:18 PM (GMT -7)   
well it sounds like you made up your mind! and that is one of the most important things, also sounds like you are happy with your decision.
I had UC for eight long, miserable years, and like others if i had known i would have done it at the first drop of blood!
While i was pregnant i was in complete remission, i ate whatever, no problems at all! it was so great! then about three weeks after my son was born, it all went down hill, and it just kept getting worse. Well, he was born in June 2005, and I had surgery in April 2007 and in that whole time i never took him anywhere by myself. The poor kid spent alot of time in the bathroom with me, luckily he thought that was fun, i let him write on the shower walls with crayons. In August of 2006, i was in the hopstial away from my child, and missing out on his life, on lots of things, wasn't able to go the beach with him, etc. And i kept thinking, what about field trips in shcool, and even just waiting in the car line for him I wanted him to have a mommy that could do things with him, same as you. Anyway, right before i went in the hopstial i went to the dr and i said, jsut take it out, NOW, and he convinced me to try remicade, i wish i hadn't. by Dec that year it was starting to fail, and by Feb 2007, i was worse than i had been in along time. I was actually hoping i would developo something that would force them to take it out. I went to teh dr and i said, either you find someone to take it out, or i will, and i didnt'mean i would find a dr, i meant i would take it out myself!
anyway, i had my surgery and recorvery wasn't fun, i won't lie and tell you it was cotton candy and fluffy clouds. But life is great now! i have been on field trips, we went to teh mountains, went to the beach, i take him all kinds of places now. Which to a normal place getting to take your kid to wal-mart seems like a non event, to me it was wonderful!
You do have to make changes, but after a while you will forget all about it, alot of times i forget i even have the thing.
With what you have, you will have to have an ileo, and your rectum removed, i think that means you won't be eligible for a j-pouch, but i am not sure.
I chose not to do that, because i didnt'w ant the extra surgeries or the chance it would fail
I don't know why you would have lost your babies, i am so sorry that happened to you.
I have heard lots of women have healty pregnancies with bags, they just have to have c-sections, and your stoma changes so you have to keep up with that, but it's far better to have a bag than be sick during a pregnancy
I wish you all the luck in the world and will keep you in my thoughs!
 


Gottagonow
New Member


Date Joined Nov 2007
Total Posts : 11
   Posted 11/5/2007 4:49 AM (GMT -7)   
Thank you for your honesty.  I need all the straight info that I can get. 
Like you I also want to go into Warmart and actually make it all the way around without trouble, I(my kids and I spend more time visiting the bathrm than the toy section!).  And I time everything, I just "went" so don't eat and hurry up and get to here or there, 10 min, 10 min....where's the bathrm????
I'm really excited thinking of not doing all that!! I hope I am a canidate for the surgery.....
How is the scar? 
The black bag????
And pregnancies, you said C-section?
And constipation after the surgery, is that typical?  Is it due to the changes in my body?  Advice about pain meds?  I've read conflicting...
I don't mean to overly pick your brain but I would like as much detail as your all comfortable....
Thank you 

spasman
Regular Member


Date Joined Jul 2006
Total Posts : 361
   Posted 11/7/2007 9:41 PM (GMT -7)   
Hi.

I want want to tell you that i know a man who had 20 D a day and has been through horrible times as you can imagine.He also got a 6000$ injection of i don't know what...then finally he has his bag now.

HE HAS A JOB NOW AND LOOK HEALTHY!!!
 
IT WAS CHRON'S.HE TOLD ME HE'S SOMEWHAT CURED.


-IBS-A,C with meteorism(trapped gas) and pubic burning-

Post Edited (spasman) : 11/7/2007 9:57:30 PM (GMT-7)


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/7/2007 10:41 PM (GMT -7)   
Hello Gotta,
 
spasman said...
IT WAS CHRON'S.HE TOLD ME HE'S SOMEWHAT CURED.
 
"Somewhat cured"  ----  that would be because Crohn's Disease is a chronic disease and can return anywhere within the digestive tract, even after surgery to remove the diseased portion. 
 
 
JudyK89 said...
The best thing for you to know is that surgery can be a "cure" for Ulcerative Colitis. The "cure" would mean a complete colectomy, from your anus to your small colon.
 
However, as Judy said, surgery can cure UC. 
 

Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/7/2007 10:57 PM (GMT -7)   
Gotta,
I just reread your message and realized that we haven't responded to your last set of questions.  Sorry. 
Gottagonow said...
    
How is the scar? 
The black bag????
And pregnancies, you said C-section?
And constipation after the surgery, is that typical?  Is it due to the changes in my body?  Advice about pain meds?  I've read conflicting...
 
I can only address part of them:
     The scar, well, it starts out really red but fades pretty well over time.  Mine has faded and is the same color as my skin now.  My docs at Cleveland Clinic left me a very thin scar at the top of it which would be the part that could 'sneak' out of the top of your pants.  It's a little wider the further south it goes!  But still has faded really well in time. 
     The black bag????    Well, I'm not sure what you are asking here --- what exactly do you want to know?
     Pregnancies....   I'll have to let someone else answer this one.  I've never had children due to complications from scar tissue (adhesions) from multiple abdominal surgeries.  I am very prone to internal adhesions.
     ... constipation...  This certainly is NOT me.  I have had all of my colon, rectum, anus and a good deal of small intestine removed; so, my digestive tract is very short and things pass very quickly for me.  BUT, I don't have pain with it and I don't have active Crohn's disease.
 
 
 
 

Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 

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