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Posted 11/7/2007 12:44 AM (GMT 0)
I have UC for 7 years. In 2005, I had a bad flare due to mono & my gall bladder being removed in the same month. Before I couldn't even tell that I had UC. I had one BM a day & ate anything I wanted & absolutely no ungencies. I just took asacol & that was it. During gall bladder surgery recovery & mono, I was having 17 bm's day. I was pred, imuran, asacol, rowasa, canasa, methotrexate shots in about a 8 month time period. Now I am an remicade, asacol, & methotrexate pills. I only have about 3 or 4 BM's a day & eat about anything I want.  BUT I have an occasional urgency which unnerves me. I am contemplating having a j pouch or some kind of surgery to get rid of this disease. I am tired of my life being dictated by my colon. I want to be able to do the things I want to do. I feel my life is on hold due to my colon. My son wants me to go on a school trip in the spring to Washington, DC. I don't see how I can do it. I hate the thought of delaying a whole group tour because I need to find a bathroom. Excuse me Mr President but I have UC, can I use your bathroom? OR no bathroom being close by & having an accident in my pants with my son's classmate saying what is that smell?

I need some info about surgery. I appreciate any advice that you can give me.

 

Posted 11/7/2007 1:13 AM (GMT 0)
Winter,

I can relate to your situation, because I had active Crohn's for 7 years before my surgery. My disease was in the rectum and descending colon. By removing them, I am medicine-free and feel great all the time now. 

 

Where is your disease? If it's in your rectum, then you would not be a candidate for a j-pouch. You would probably get an ileostomy.

 

Having an ostomy is like this... imagine never having the urge to go again. No more running to the bathroom. No more fear of having an accident. No more pain and sleepless nights. After what we've been through, it's a dream come true!

 

When it comes to surgery, I'm not going to sugar coat it, because it is a big surgery. But, once you've healed from it (let's say 6-8 weeks), you can get on with your life and be healthy again. For UC, surgery is a cure.

 

If you have any questions about the details of the surgery or life with an ostomy, please feel free to ask. We are very open about everything.

 

Take care,

Cecilia


Posted 11/7/2007 1:42 AM (GMT 0)
I know exactly how you feel about your life being on hold. Before my ostomy I was afraid to go anywhere, even a short walk with my husband ended up with me sitting on the curb while he ran home for the car.

My ostomy was supposed to be temporary, and while it was difficult to adjust to at first (never underestimate the hit your body image will take, and there WILL be some depression), I have never been sorry since, I never wanted it reconnected and I now have a life. I can work, go to school, go on trips, walk, run, horse back ride, swim, etc. You get the idea.

I don't know much about a J pouch, but I believe there's a forum just for that, not sure if it's here. I know it wasn't/isn't an option for Crohn's disease, and I really don't care anymore, lol.

The first thing you need to do is talk to your GI and tell him you've had enough. Ask him for a surgeon consult, talk to the surgeon, take a list of questions with you.

Good luck, keep us posted.
Posted 11/7/2007 2:10 AM (GMT 0)
I have UC in my colon. As far as I know my rectum is fine. My last GI moved to another state & he recommended a surgeon before he left. He had Crohn's himself & had a J-pouch. I havent' discussed it with my GI now. I will at my next appointment. I am a teacher so if I do have surgery, I can have it done in the summer & hopefully not miss a lot of work. Please give my any info you have about the surgery & life after surgery. I could probably stand the meds if I didn't have the urgencies. It aggravating to take all this medicine & still have urgencies. Right now I am fairly healthy & don't have any pain or eat almost anything. I keep thinking the longer I have UC, the likelihood that I could get cancer. I tired of the urgencies & bathroom hunt wherever I go. Even though I haven't experience any side effects from the medicine, the possible side effects are scary.
Posted 11/7/2007 2:18 AM (GMT 0)
The urgency, the always knowing where the bathrooms are. The 20 plus BMs a day. The life being on hold.
The not wanting to leave the house. BEEN THERE DONE THAT.

Dump the colon. Get the surgery. Get your life back.
Posted 11/7/2007 2:23 AM (GMT 0)
Thanks
sometimes I feel like maybe I am being a whiner because I am only having one or 2 Bm's a day & I am healthy (right now) I am just tired of meds & urgencies
Posted 11/7/2007 2:28 AM (GMT 0)
Yeah, hold on here. Pretty sure you can only join the club if you have like 20+BMs a day, right?
Healthy whinners. Sure, come on in.
Posted 11/7/2007 3:11 AM (GMT 0)
Slice,

I have to disagree...what about us ostomy peeps who had 20 BM's per year. Don't discriminate against us constipation folk; we need love too.
Posted 11/7/2007 4:37 AM (GMT 0)
Winter-glad you come over here!
I don't think you are being a whiner, i think you have just reached your limit. And everyone has a diff limit. For me, i didnt' reach my limit soon enough!
Anyway, if you have your surgery in summer, barring any major complications, you will be ready for work again! and feeling so much better!
Like Flchurchlady said it's great not to have to worry where the bathroom is! although it might be good to use the presiden'ts bathroom, no telling what you might find in there!
surgery is not fun, it hurts and you will feel wiped out. But when i woke up, even though i felt icky from surgery and all drugged i felt better, i have tried to explain it and the best i can come up with is i felt clean. I gues because that disease was OUT! and i also felt better because i knew that when the pain from the surgery was over, it would be over. Not like when you go on a med for UC that works for a while, and then it comes back, you know? i knew what to expect.
THere will be moments when you are depressed and kind of sad, but for me there were alot less of those after the surgery than before. The main times i felt bad were, when i first woke up, i looked down, and they put a clear bag on you, and it's really gross looking, lol. And i was heavily drugged, and i thought oh my what did i do??? but i got over that and thought of all the things i could do now.
The thing that cemented to me that i had done the right thing, and i know this sounds so stupid, but on my post surgery visit, i got in the car and i didn't worry about the hour ride, or the fact that there might be a traffic jam or where a bathroom was! and on the way home i stopped and got a milkshake and fries! and ate them in the car! like i said, it sounds dumb, but it was freedom!
and you saw my pics, so you know you can't tell, and the changes to my life have been minimal. if i do get down about it, i just think about the things i can do now that i could never have doen before!
i think if you do it you will be happy
Posted 11/7/2007 5:33 AM (GMT 0)
We know your struggle, the unrelenting pain and humiliating urgencies. It's just not worth it. The surgery will change your life. It put's you in control of the situation, not an angry colon. My vote is get rid of it and be a much happier person.

My advise: read up on past posts. I wish I would have known about this site when I was making the beginning decisions about surgery. It helps to know that there are many of us, dealing with the same issues.
Posted 11/7/2007 8:14 PM (GMT 0)
I plan on talking to my GI about it. Don't know if he will go along with the surgery since things have been decent recently. I will try to relay to him the mental & emotional strain it has put on me. I would like to have the surgery while I am still healthy instead of waiting when I am flaring & drained. Thanks for all your advice

Posted 11/7/2007 8:50 PM (GMT 0)
You can also use your increased risk of cancer as a reason to have surgery. I had UC, too, and because of it, we are at higher risk for colon cancer. I have 0 risk for it now - as I have no colon!
Posted 11/8/2007 1:26 AM (GMT 0)
I had a remicade infusion yesterday & the nurse informed me that I was getting a double dose of Remicade. That concerns me that I am receiving so much Remicade & still having urgencies. So I am going to talk to me Dr about surgery at my next appointment. Thanks for all your input
Posted 11/8/2007 3:38 AM (GMT 0)

Hi Winter,  I'm brand new to this forum - to any forum in fact.  Your post hit me in the gut - where it's counted for the last several years! I've been putting up with UC related symptoms for I'm pretty sure forever now and I am now 2 weeks post-op. No more nasty colon! It's amazing! Yes, I'm sore and worn out, but there's no pain, no urgencies, no embarrassing accidents, no fear in leaving the house, no looking for bathrooms immediately on entering a building, no changes of clothes in the trunk, no explaining to my children how I can't do (anything) because my tummy hurts, no more nasty, diseased colon. It's an amazing feeling of freedom. OK, the ostomy is a definite adjustment, but I got the j-pouch and look forward to a takedown in a few months. I spent a lot of time reading many posts on this forum and a couple of others b4 making the decision to have the "big cut," and I was incredibly fearful, but I have to say at this point, it was well worth it. I don't know if I would have done it if the urgencies, pain etc., hadn't been so intense for so long, but it really is a huge burden lifted. You'll have to figure out how much you can take - living your life around a bum organ - and then, when the time is right, the decision will come to your with a clear tone. Good luck!

Posted 11/8/2007 3:40 AM (GMT 0)
i went to my GI and i said, either you find someone to take t his thing out or i will! and i didn't' mean that i would find a dr, i meant i would take it out myself! if he won't help you find another one, drs like to make money, you will find oen that will do the surgery for you!
Posted 11/8/2007 4:38 AM (GMT 0)

Candyland,

Welcome to HW.com!!! :-)    I am glad that you have decided to post a message and let us know that you are recovering.  I hope that we have, in some way, helped you.  How are you getting along?  Adjusting well?  I bet it is a relief to be rid of all of that nasty colon and running to the bathroom around every corner, isn't it?    I can relate, tho it's been many years for me.  Good Luck on your recovery.  Let us know if we can help you in an way....  that's what we are here for.

Keep us updated on your recovery. How is your appetite and how does food taste now?  Another new experience for you?  And your diet? 

Posted 11/8/2007 9:49 PM (GMT 0)

Hi Peggy,

You guys are the best! This forum has been such a mood lifter for me for quite a while and especially now. It feels good to know that I'm not alone in this crazy world of poop and D and other such lovely matters. There's a whole crew of us walking the streets and driving the roads and nobody has shunned us to a deserted island. What a relief! :-)   Thanks so much for the welcome and the inquiry as to my recovery. My appetite is starting to come back, but it's funny you should ask what food is tasting like because my tastebuds seem to have taken a vacation. I don't know what's going on, but everything tastes like my tongue is burned. Thrush maybe? I got that a couple of times before the TC when I was hospitalized with UC complications and put on strong IV antibiotics. I don't think I was on very many for very long after the big cut, but I guess I still might have gotten it again? Eight days in the hospital - who knows? My surgery went very well, but recovery has it's challenges. Mostly my biggest issues are back pain (read about that somewhere else in here - again thought it was just me!) and weird creepy "gray matter" seeping out my bottom. Today I was very crampy which was different. It seems like I feel better and stronger for about 3-4 days and then have a day where I just don't want to move. Mostly tho, I'm just thrilled not to have to run to the bathroom all the time and to leave the house without worrying about getting to the next place. Wahoo!! Thanks again to you and Amey and everyone else on here who make this more bearable. You guys should know how much good you do for everyone. :-) :-)

Posted 11/8/2007 10:59 PM (GMT 0)
Thanks for all the input. I have 2 sons (8 & 12) I want to get this taken care of so I can still get out & do things with them while they are still young. I teach & get 2 weeks spring break in March. I would like to have the first surgery during this time. Then I get out of work in June & July which would be a good time for the second surgery and recovery time. We will see what the GI says at my next visit.

Posted 11/8/2007 11:33 PM (GMT 0)

Candyland,

When I was reading your post, the thought popped into my head that once the pain of my CD was gone, and each day that I recuperated from the surgery...   food began tasting better and better.  I think the brain has a part to play in that:  if it causes pain .... it doesn't taste good.   If it no longer causes pain ....  it begins to taste better.  That's the way it has worked for me.  So what foods are you eating now?

I know what you mean about feeling good for 3-4 days, then having a 'down' day.  It is almost like you pushed your body too hard during those 3-4 days, and then you pay for it.  I did the same thing.

It is so good to hear from someone who is adjusting so well.  We all had to go thru it, so we do know from experience what you are dealing with.  You have a great attitude.  Your kind words are much appreciated.

Posted 11/9/2007 1:22 AM (GMT 0)
Like Sfgiantsgo said, the longer you leave a diseased colon inside your body the greater the risk for cancer. I had UC for 30 years. I would try to convince myself that I was okay--I could handle it with medicine. I was just fooling myself. Last April, my colonoscopy showed dysplasia. That was an eye opener. I had the whole colon and rectum removed in August. Now, I wonder why I was so scared to have the surgery! I am adapting to this new way of life just fine. Everyone on this forum is real and helpful. Good luck. You can find a lot of information about J-Pouch on www. jpouch. org
Jennie
Posted 11/9/2007 2:26 AM (GMT 0)
food tasted weird to me for a while after surgery too, then i realzied it was caused by the pain pills. Which you might not be takign anymore, but if you are or if you are weaning off pred that can change your taster.
anyway, i am glad you are doing so well candyland!
Winter-you might want to give yourself a little more than two weeks for recovery from the first surgery, at least three weeks.
Posted 11/9/2007 6:33 PM (GMT 0)
ok thanks. I have about 60 sick days saved up, so I can use my discretion on when to return back to work.
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