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I have UC, considering surgery but scared

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Posted 12/30/2007 4:17 AM (GMT 0)
Hello there.  I have had UC for 12 years, since I was 15.  I have tried most meds out there with little help.  Remicade was kinda working but I had a reaction.  Now I am going to try Humira.  All my problems are rectal, one darn rectal ulcer that won't go away after 4 years already.  I used to have UC in my colon but 4 years ago or so it went to my rectum only and stayed there.  My GI told me a j-pouch wouldn't be good for me because I could get perianal abcesses?  I am confused and trying to think of the future and having an ostomy and having my rectum removed but it seems like such a huge change. Will I be spilling poop all over, not be able to shower, wear clothes I like, will people be able to tell?  I am sorry, this is all new to me...
Posted 12/30/2007 8:37 AM (GMT 0)
Having a reaction to Remicade is not unusual and there are steps one can take to prevent a reaction in the future. I also had a reaction the 2nd time I tried it about 3 years ago. Now I just take Prednisone and Zyrtec the day before and the day of the infusion. I haven't had a reaction since. Considering that Remicade was working for you, I'm surprised your doctor gave up on it so quickly.

Post Edited (vette guy) : 12/30/2007 1:42:59 AM (GMT-7)

Posted 12/30/2007 4:05 PM (GMT 0)

Princesscolon said...
Will I be spilling poop all over, not be able to shower, wear clothes I like, will people be able to tell? 

1 ) Nah, all the poop will go into the bag and you will empty it when it needs emptying :)

2) I have a shower every day. I change my bag once a week and let the water run over my stoma to get it nice and clean. The rest of the week I just shower with my bag on and dry it off as I dry the rest of me.

3) At first you'll want loose clothing while you heal, but after you've healed you should be able to wear what you wore before surgery... excepting low rise jeans and crop tops. I used to wear the tightest jeans imaginable in my teens and no one could tell I had a bag.

4) The Queen Mum had a colostomy for 30+ years before she died. John Wayne, Bob Hope, Ronald Reagan, Barbara Barrie (the Nana in the TV series, Suddenly Susan, and before that she played Barney Miller's wife in the series Barney Miller - I have her book), Fred Astaire, and many others all have ostomies but I bet you never knew :)  Does that answer that question?  :)

I had UC too and I'll tell you, even if you gave me a million bucks you couldn't convince me to give up my ostomy and go back to my UC days. Life is sooooooo much better with an ileostomy. I don't have to look out for the nearest loo everywhere I go, I'm on no meds, I can eat anything I want and there is no pain.

Good luck with your decision.

Posted 12/30/2007 5:18 PM (GMT 0)
I do not have UC but I do have bladder cancer. My bladder and everything else down there was removed in 2001. I have been wearing a Urostomy pouch ever since. Cancer cells were found in the lymph nodes in the groin so that meant 3 months of Chemotherapy. 2008, almost, and I am still here.

Rather than me give you details of my experience as a urostomy patient, I am going to refer you to my blog where I am detailing my experience since diagnosis in 2000. If you have the time take a read.

My blog: http://www.mybladdercancersite.com

The best to you. You will do fine.

Neil
Posted 12/30/2007 8:02 PM (GMT 0)
Hi princess colon,
I'm a newbie who posted the sme questions,but u guess I posted them in the wrong spot. I have crohns disease and my doc wants me to get a temporary ileostomy. I'm scared outa my mind and have the same concerns, especially about smells,clothes,scarring, and the actual stoma (all the pics I see totaly freak me out) this site has made it easier to tal about without crying, as the surgery for me will probably b this month due to a rv fistula that's making things uuncontrollable if u know what I mean.

Question for shaz, u said u wore tight jeans, I like for my jeans to fit closely, but I question where the bag is if ur jeans e tight? Does the pressure make it burst?
Posted 12/31/2007 12:23 AM (GMT 0)
Dear Praying,

We have so much in common, it is scary.  I have an almost rectovaginal fistula and we are almost the same age and have had this both since '95.  That is so weird.  I'd like to keep in touch with you somehow, like give you my email address or something.  I need to find out a way to do this without posting to everybody?  Keep in touch please!  I know how scared you are and what you are going through. Good luck with the surgery.

Posted 12/31/2007 4:44 AM (GMT 0)
i am definitely interested in keeping in touch as well
it seems so hard to find people in the same position. everyone on this site seems like a pro lol
i broke up with my ex, just cuz i never really told him what was up and for other reasons
but now its like...will i ever date again? am i just gonna stay in doors for six months? people laugh and say im being unrealistic, but im really serious
im so freaked, im glad we have so much in common and can share our concerns. I don't know how to share my email with u either, mayb a moderator or someone can help us
please keep in touch, i'll look for u in on the boards!!
Posted 12/31/2007 5:05 AM (GMT 0)
noone will ever know unless you tell them, i promise!
check our or pics on photobucket.com. The user name is crohnsdisease and the password is 6mp3asa. There is a pic of me in a bathing suit and a pic of me that i labeled, can you tell, its two pics actually, one before i had the bag, and one after, noone so far has been able to tell the diff.
I wear the same jeans, in some i wear a size bigger, just because i think that feels better, but in others i still wear the same size before. There is a scar, but that's a small price to pay for getting my life back!
i know how scary it is, i had UC for 8 years before i decided to have the surgery, and i was so afraid to make the decision i was hoping that i would get toxic mega colon or something so i wouldn;t have to choose! isn't that awful, lol. But anyway, after i talked to people here, and realized how great their lives were, and reading that list of famous people helped too, Napoleon also had an ostomy, and he conquered countries like it was nothing, if he could do that with a bag, surely i could go back to my normal life!
And look at that list also, would you have ever guessed any of them had one? look at Tony Snow, he has one, you can't tell.
The poo won't spill out, it goes in the bag quite nicely. It's really much easier than going to the potty the normal way, it takes like two minutes to empty the bag, and then you are done! no hemmroids, no colon cancer no rectal cancer. I was grossed out by the stoma at first too, but you get used to it. And you only see it when you change the bag, which isn't that often. You can shower everyday, not a big deal at all. You can swim you can play in the sprinkler, you can jump in the creek.
The only time you would have to worry abotu your bag "bursting" is you were to let it get too full, which you won't because it would get uncomfortable after that, and even then it doesn't happen much. I had an upset tummy this morning and woke up with my bag so full it was like a balloon, but it didn't pop off. And i found it, it's so much easier to have an upset tummy with a bag, lol.
Anyway once you have the bag, and see how much better your life is, you will be ok iwth it, and much happier than you are now!
Posted 12/31/2007 6:02 AM (GMT 0)

praying4healing said...
Question for shaz, u said u wore tight jeans, I like for my jeans to fit closely, but I question where the bag is if ur jeans e tight? Does the pressure make it burst?

Hi there

I wore stretch jeans and the waist band came above the top of my bag so no problems there, ie the waist band didn't interfere with my bag.  I did have to empty my bag once or twice more than normal, but that was about it.

For pics of ostomates doing what they do have a look at http://ostomates.org/gallery/index.php?cat=5  you'll even see a few in bathing costumes and I bet you won't be able to see their bag through it :)

Good luck.

Posted 12/31/2007 10:52 AM (GMT 0)
Princess and Praying,

Welcome to the Ostomy forum, I'm glad you found us. I was diagnosed with Crohn's when I was 28 and was also very scared to have surgery. After 8 years of trying every medication out there, the disease was not under control, so 4 GI doctors finally convinced me to have a temporary ileostomy. I only agreed to it, because it was temporary, and I had every intention of reversing it after my colon healed.

The first thing I noticed with an ileostomy was the ability to sleep through the night for the first time in years. It was wonderful! I used to have to get up several times during the night to go to the bathroom. I didn't realize how sleep deprived I was. I also was able to go shopping without having to go to the bathroom, which was great! I was completely surprised that I actually enjoyed having an ileostomy!

After 8 months, my colon never healed, in fact it started bleeding nonstop, which really scared me. I knew that each year that I held onto my diseased colon, it only increased my chance of developing cancer. I'll never forget asking myself, "What are you holding onto? A diseased colon? Why??" The thought of having cancer and going through chemo was the final deciding factor for me. That's when I decided to make my ileostomy permanent and have my diseased colon and rectum removed.

It was the best decision I've ever made, and I've never looked back. To be honest, having an ileostomy is no big deal and is so much easier than being sick. I am completely healthy now, take NO medicines, and have no pain anywhere. I don't even have to see any doctors anymore! The bottom line is... I have my life back! It's the best feeling in the world to not have to run to the bathroom anymore, wondering if I'm going to make it there in time.

The pouch is so flat under my clothes that nobody knows it's there. I exercise, take a shower every day, wear cute clothes, and work a full time job. I only have to change the adhesive wafer that holds the pouch on once a week, which only takes a couple of minutes. Just peel and stick and I'm on my way! I empty the pouch each time I go to the bathroom to pee. The pouches have velcro openings at the bottom, so that makes it easy to empty.

Also, intimacy with my husband has never been better. Now that I'm not sick anymore, I actually have a sex drive again! I thought that I had lost it forever, but the illness and medications messed it up while I was sick.

None of us asked for or wanted this disease, but we were given it, and there is a solution, which is surgery. It is completely normal to fear the unknown, but that's why we're here, to help you understand what it's like to have an ostomy. Please continue to ask us any questions you might have, and we'll give you honest answers.

Wishing you all the best,
:-) Cecilia
Posted 12/31/2007 2:01 PM (GMT 0)
Cecelia, shaz, princess and everyone else,

Thank you sooo much. When I went to bed last night I actuly thanked God for allowing me to find this site b/c it is a Godsend! I hope I didn't break ne forum rules by saying that.

But n e way, this site has actually made it easier to make a decision that I cry/cried about often and I guess was inevitable. I can't pretend that I'm still not afraid, and that the complications I read about don't make me wana change my mind again. But all of those things mentioned are what I'm going thru. Running to gross public bathrooms in the mall not being able .to eat what I want, chronic fatigue, now wearing depends b/c of this rv fistula( I'm 25 and wearing depends! I cried on my bathroom floor for two hours on christmas morning), and worst of all the pain.
When you guys give me your stories about a better quality of life u give me hope.

Thank you
Posted 1/1/2008 3:23 AM (GMT 0)
I am still In the recovery period and still have my ups and downs. Believe me, it's ok to be scared. I think you will find this group AMAZING for your recovery too. I don't know what I would do without them. Good luck to you ... and keep us posted.
Posted 1/1/2008 11:35 AM (GMT 0)
Praying,

Hi There! So glad this forum is helping you feel at ease with making a decision. Just think of how when you and your friends consider "quarter-life crises" you will totally trump EVERYONE.

I'm 29, I started this journey as a woman with Death Con 5 Endometriosis and a RV. I got the ileostomy because the RV opened just after a 10-hour dissection of my abdomen to clear out the endo and resection my colon, which endometrial lesions had invaded.

I had my ileostomy reversed - against my better judgement - Sept. 27th.

I am writing you from the hospital RIGHT NOW after having a Colostomy placed Dec. 27th. Every thing you have been told about having an ostomy is the truth. I have 3 teenage sisters and I regularly pass as their classmate (until the lunchbill comes and then suddenly I am Automatic Teller Big Sister). I wear my jeans tight (thank the lord high rise are coming back into style, how much buttcrack can anyone really want to show), I no longer wear adult diapers, I will have a pain prescription for a week or two after I am discharged from the hospital, then I won't be visiting drug stores for reasons beyond reading gossip magazines because with an ostomy you dont need pain meds, steroids, etc.

The stoma is kinda weird to look at the first couple of days, but then it gets REALLY COOL. All my friends were impressed. And my friends live all over the country and world, guess who got to fly places and visit her friends for the first time in years because she had an ostomy and could travel? I loved my ileostomy stoma, it repesented freedom from disease, illness, bad weeks-months-years, and a future. I started back to school beause I knew I wouldn't have sick days. Suddenly the world opens up and things you didn't even realize you had denied yourself become attainable.

You look great in great dresses (I buy my little black dresses from a store called Bebe, they are skintight) and everything else. You gain confidence. I didn't wear underwear regularly with my ileostomy and plan to get right back to my commando ways with my colostomy.

And boys. Or men. I had a boyfriend by my side as I went through this journey, but as I grew more confident and reworked by wardrobe (with the help of Tim Gunn's Guide to Quality, Taste and Style and Project Runway reruns) I had to beat them off with a stick. I've met so many guys who think the stoma is the coolest thing ever, I have a better scar than they do (boys dig scars) and who admire my moxie and determination to live life to the fullest. I told a few guys about it in a last-ditch attempt to get them to leave me alone and they actually asked to SEE it (I obliged a couple of the times) and ended up buying me lunch to talk about their cousin, mom, aunt, uncle who had one and how cool it was that I had one and my boyfriend was soooo super lucky and blah blah blah.

My boyfriend hated to see me miserable, going to the bathroom 20-30 times per day, depressed and feeling as though all the gains I'd made through surgery (8 for endo and the rectal problems) had been stripped away from me. Now that I have my ostomy - and I've let my surgeon and ET nurse know I'll not be giving it up again - we are planning to start a family after traveling for a year to celebrate my health and my new life.

All that to say: Go For It. It's Scary but you have the prayers and support of a LOT of people you don't know by name or face, but who are now investedin your happiness, health and recovery. I wish you the very, very best! I wish you a 2008 of greatness and ease from disease. I wish you all the great things being an ostomate brings (and they are too many to mention).
Posted 1/1/2008 5:22 PM (GMT 0)
Hi Princesscolon,

I have read some of your posts on the UC board too - I used to read it before, but now I've switched to the ostomy board since having my emergency ileostomy over the holidays. I was scheduled for an "elective" ileostomy for late January, but my UC got so bad over the holidays that I ended up in the emergency room and had to have the surgery sooner than later. I guess this was a bit of a blessing in disguise, since I didn't have all month to stress about having the surgery. I totally understand your fear though - I did have to wait a week in the hospital before I had the surgery and it was very scary, but in the end I was feeling so sick that I was just saying "take it out!!" The surgery really wasn't as bad as all that - you just go to sleep and the surgeons work their magic. I had it done laparoscopically too, which is pretty amazing. My scars are so small and the incision sites are barely noticeable. It really is cool what surgeons can do nowadays. I'm was up walking around the day after surgery (not a lot, but still, I was impressed!).

I'm still recovering, and things aren't great yet and I'm still getting used to the bag and I have some cramping and gas and prednisone withdrawal symptoms, but I'm so happy to be recovering from surgery and not just recovering from another flare, wondering when the next one will hit. That was the biggest factor for me - I wanted to be recovering and getting better and not just steroid dependent, waiting for the next flare to hit. I'm so excited to get off the steroids now and will hopefully never have to go on them again. I'm also excited at the prospect of being relatively drug free soon - no more painkillers, no more asacol, no more toxic Remicade that wasn't working anyway. No more feeling tired and missing out on life . . . . I think it will all be worth it in the end, even though the thought of more surgeries to create the jpouch is daunting.

I love reading all the posts from the veterans like Stomagrrrl as they really give me hope and keep me positive. I'm excited to take part in life and start exercising as I get my strength back (right now I'm pretty weak as I lost so much weight being sick and I'm still only a week post-op). I'm also excited to eventually be able to eat and not be in horrible pain after every meal, although I'm a bit nervous about introducing all the raw foods I love back in my diet.

My husband has been super-awesome about the whole thing and says he still finds me sexy, although I given the sight of me right now, I can't imagine why!

Good luck with your decision - or maybe it isn't that much of a decision since it sounds sort of inevitable, like it was for me. UC/Crohn's are awful diseases, but I keep trying to remember that at least I'm alive and I'm lucky I have the prospect of leading a life pretty close to "normal" one day.

Kristen
Posted 1/1/2008 7:40 PM (GMT 0)
u guys are sooo encouraging. its been about a week since i've found this site, and I haven't cried once! this is major for me since when i got discharged from the hospital a few weeks ago, i cried everyday due to this rv fistula. and then cried more because i knew that my mom was sad because there was nothing she could do. She's so glad i found the site, she said its nice to see me smiling again. i still hardly get dressed yet, b/c none of my clothes fit, i hate being skinny!!!!
but i went to church last night, and i walked around the mall with her which was a big step for me. i always feel like everyone's staring at me

I know myself and i feel like i'll probably be sad for a while after the surgery, but i hope what you all say is true and that the bounce back time will be short and worth it. Its just nice to have a break from the tears, even if they will be back soon

Princesscolon, i hope everything is working out for you
Posted 1/1/2008 10:44 PM (GMT 0)
Humor break: this is one of my faves. You know when you're talking to someone and they playfully say "you're full of crap (or crap)?" you can with a perfectly straight face say "no I'm not." Cause YOu're not!!!! There's nothing in there! It's great.

I can relate to the weight loss. I have lost 45 pounds. I wear juniors section clothes, which is a big plus as they are actually cuter than adult clothes and about 50% cheaper. JC Penny always has $5.00 clothes (skirts, sweatpants, slacks, and cute tops) in their sale section.

RedHeadedMama, be careful with the exercise. Every calorie you consume is already being used. My docs first said something vague like "walk in moderaton." which i took to mean "lap your building a few times." Walk in moderation really means walk to the bathroom, walk to the kitchen, and remember to take deep breaths. Breath work will get build your cardiovascular strength, deep yogic breathing. It hurts your abdomen a little, but after a while that kind of tunes out and what you have is a deeply relaxing experience that boosts your immune system, calms you and gives you a foundation for recapturing your strength. Just keep in mind, with ileostomy especially those first few weeks you're not getting many nutrients and you have to conserve your energy. You will feel the change. It's a big change when you go from sleepy to "let's cook a 12-course meal!" Even then, settle for making a nice dinner or lunch, something simple.

As odd as it may seem, enjoy the process. Having an ileostomy sprung on you is nasty business and if I hadn't been at risk for peritonitis I would have kept refusing the treatment. But it's such a pleasant life. There are LOTS of tricks for keeping yourself fresh and clean (for instance a little - like two drops - of low concentration (OTC) peroxide in your bag kills all odor) and changing your bag in the morning before anything else will minimize mess. give your stoma a name, mine was Old Faithful, shortened to Faith. Pay attention to the foods that cause gas (i nearly exploded a bag eating a sliver of cucumber. I'm off of cucumber forever now).

Get plenty of sleep, that's when your body does the majority of the repair work. you will be amazed at how small your stoma will get (my ileostomy stoma ended up looking like the most perfect cherry tomoato, it always made me hungry). Give yourself what you need and your ostomy will totally take care of you!

with humor and love.
Posted 1/1/2008 11:40 PM (GMT 0)
Praying4Healing ~

I'm glad you found this site, too. It makes me happy to hear that we have helped ease your fears and that you haven't cried in a week. My heart goes out to you, because I also had a RV fistula and had to wear a pad all the time. I had more accidents than I want to remember and used to take all of my vacation days as sick days.

I agree with Stomagirl that there are so many benefits to having an ostomy. For example, I'm on a two week vacation right now, and it's the first vacation I've been able to take in 8 years! I live in Florida and the weather has been beautiful, so we've been visiting family up and down the west coast. Car trips were always difficult to do with Crohn's. Now, we can drive for hours without stopping.

I even helped my husband put up 64 feet of wood fence yesterday. It was hot and sunny and took us four hours to complete, but we did it! I feel like there's nothing I can't do now. It's also a blessing to be able to eat whatever I want without having to suffer the consequences after. The list of benefits goes on and on...

Hang in there and keep praying. I know the Lord answered my prayers for healing, and He will answer yours, too.

Keep smiling,
:-) Cecilia
Posted 1/2/2008 3:12 AM (GMT 0)
Stomagrrl, you are awesome! I kept smiling just reading your posts :-) I am happy for you that things have turned out so well, and you are proof positive that a lot of life is about having a great attitude!

Princesscolon and Praying --
I am much in the same boat as you two--I am 27, have had Crohn's (it only affects my colon and rectum, so it is a lot like UC) since I was 15, and have dealt with so much stuff over the years.

I have been told I need to have an ileostomy as more than 50% of my colon is now scar tissue, and I have a family history of colon cancer.

I totally was nodding along to what you both wrote..! I am glad you found this site--I lurked for months before posting, and was so comforted by what I read. These folks here really have helped me get used to the idea of having an ileostomy and realizing that it is Not the end of the world at all, it is really a new beginning. :)

I am thinking about scheduling mine as soon as this spring, because my fiance and I want to have kids soon, and it is recommended that you wait about a year after surgery to try for kids...

Anyway, you both will find a lot of EXCELLENT advice here, and encouragement.


Erin :-) :-)
Posted 1/2/2008 3:27 PM (GMT 0)
Erin,
I'm so glad that to hear that you're planning to have surgery soon. I also had Crohn's that was contained to my colon and rectum, and my Gastroenterologist told me that it is highly unlikely for it to ever show up anywhere else. So, for me, this surgery has been a cure that I never knew was possible with Crohn's. For those of you with UC, surgery is a cure.
:-) Cecilia
Posted 1/2/2008 3:54 PM (GMT 0)
Erin,

Good for you! We're here for you and we will keep on cheering and encouraging and answering any questions that you can come up with. Be as careful as possible and take vitamins and build your strength for the operation. I was going to recommend that to RedHeadedMama as well, ask your doc if you need an iron supplement etc. I use Geritol liquid and have it with food. Also, with an ileostomy you're only getting 30-40% of the nutrients from food, including meat, so you may want to try protein shake. I get generic stuff with amino acids from GNC and have it after each meal. I would say that will bring your energy up more quickly (use water for the mix, not milk). Protein shakes do help and since you cant eat raw veggies, get powdered fruit & veggie powder, add it into your soups or you can add it to the protein shake. Say, if you eat a bit of sanwich, drink protein shake and put fruit powder on the bread. Bang for the buck.
Posted 5/15/2018 7:19 PM (GMT 0)
Hi Princesscolon,

I'm after some advice and new to here.
I have been diagnosed with Solitary ulcer syndrome due to a prolapse and I see you had similier? I was just wondering what your outcome was?.
I'm awaiting and operation but it isn't funded by the NHS and it's very expensive, I have also been put on steroid enemas but only started today so cannot comment on what they are like.

Katie
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