I need encouragment, please!

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Crohnzie Girl

Crohnzie Girl

Joined
Jun 18, 2013
Messages
142
My GI Dr recommended me to see a surgeon bc he didn't know how else to control my disease on only meds. Well, 2 wks ago I met with him and he confirmed that I do indeed need to be in bag bc my colon is pretty inflammed. I thought my life was over! But after reading many success stories on here and speaking with a stoma nurse, I've decided to go thru with it. Well, now I'm panicking!! What if I don't know how to take care of it? Or what if I hate my stoma? Or what if I went thru all that and it didn't help at all?? Ugh! I'm freaking out! Idk what I want, but I do know for sure...I WANT RELIEF FROM MY DISEASE!!! can somne please tell me if I'm being irrational bout making my decision too quickly or will all my fears go away once its done? :sign0085:
 
What's important is that you are healthy and will feel good again. Sometimes a bag is only temporary. Do they think your colon is inflamed or scarred? If its inflamed you can still experiment with other drugs in the hopes of preserving bowel.

I'm sure they will tell you everything you need to know to care for your bag and there is a lot of info here and online as well as people here who can answer your questions.

Have you been to our stoma sub-forum: http://www.crohnsforum.com/forumdisplay.php?f=46
 
Heyy, yup I've been to the forum thats where I learned a lot bout others experience living with a bag. And yes he said he didn't see the need to remove my colon in hopes that if my colon does heal with new meds out there he can reverse it. But again I've read several stories that those possibilities are very slim... I do want to feel better of course for my children being a single mom and all. I'm probably jus freaking myself out but I can't help how nervous I am and how this will be a life changing experience for me. It's HUGE! Lol. But thanks for helping me see the reality and that's to get better. :)
 
Well I understand how scary and undesirable it might be but your quality of life will probably greatly improve. If its a temporary bag it will take the stress off if your colon allowing it time to heal in conjunction with medications. It might be the way to avoid surgery to remove it down the line.
 
Deep breathe in...Exhale out! Thank you NGNG, its midnight and I have got to get to sleep. But reading your last post helped me calm down alittle. Your right bout surgery down the line. I certainly don't want that! Thanks again! :)
 
Hey there! I have the exactly same thing as you are in. My rectum and colon is too inflamed and i have tried every meds there is, nothing works. I have perianal disease also, and my anal area is badly inflammed and theres deep fissures and possiple fistula.

My surgery is going to be in august, early august. i don't have the date yet but going to call my surgeon on monday so i get the surgery date.

I am so scared, and relieved too. One thing is for sure, i am definitely NOT going to miss going to BM "normally". My poor bum is sooooo sore..

Do tou know your surgery date yet? Is your stoma going to be ileostomy?
 
Hi Jemena! Wow we are going thru the same thing. The only thing I don't think I have are fistulas bc I haven't heard my Dr mention anything like that to me. But my disease is primarily in same area as yours that's why I have the constipation rather than the diarrhea. It's badly inflammed he showed me pics of my last colonoscopy of the area where the disease is and the part that is healthy. What a difference!! I don't have a set date yet. My next visit w the surgeon is July 9th. That's when I tell him I've made my decision to have my colostomy. And if he can book me I was planning to have it done by late Sept or early Oct. I'm still wigging out over here!!!

Your so young but I appreciate your optimism and handling your situation in a mature manner. Props for you!!! I wish you the best of luck come Aug which is jus right @ the corner. I kno what u mean bout not missing bout going to the bathroom. Although seems like u may have it way worse than me.
 
Well, Crohns For Life it seems like you are doing much better with out it. Good for you. But tell me, when u first learned you were gonna have the surgery did u go thru any of these fears I'm going thru? Or am I jus being a wuss?? Lol
 
I did not have much time to worry about it. I was bleeding to death in the ICU when I told my wife to call the surgeon. I told her that I was sick of going to the hospital every time I bled heavily. I asked her to tell the surgeon to take my colon out. By the next evening, it was out.
 
The 2 weeks leading up to having my colon removed, I went back and forth from being calm and assured to total freak out about once an hour. However, I am soooooo glad I had it done. I just couldn't keep going like I was before surgery. I love my ileostomy!!!
 
Wow, Crohn's For Life, I can see why now you don't miss it all all. I'm glad its all working out for you now. :)

@ 2th Fairy, ok thank goodness at least somne else feels the way I do know. At first I was starting to think if I was one of those dramatic type girls. I usually try to stay calm and level headed but the fact that I have time to think bout it and the surgeon gave me the choice....its like one min I feel its the best thing to do...then I'm like NOoOooo!!!! Lol but I certainly do want to feel better and I have an amazing support team. So I'm still scared but at least I kno I'm not alone! :)
 
I think most of us aren't given the choice so that makes it a lot harder for you. What you are feeling is perfectly normal and understandable. Its a huge decision and does have a big impact on your life but it is amazing how quickly you learn to deal with it all and get over the body issues. Having a positive attitude is the best thing. Just tell yourself that it is the best thing for you and think of all the horrible things you put up with now and they won't be there when you have your colostomy. Keep us updated with how everything goes and remember that we are all here to support you. Whether you vent away, cry away or say hip hip hooray we all understand.
 
Hi there,
Just sending you my best wishes and hope all goes well for you. It is only natural to feel upset about such a major change in your life. I hope you soon start to feel better and am sure talking in this forum will help. It is good to share with those who have experienced the same feelings!
:rosette1::rosette1::rosette1::panda-wave-t:
 
Hi,
Im New to the Forum ! Which seems rediculous based on my history !
I was diagnosed at age 18 in May 92' after being I'll all my childhood.. I was then on medication (prednisolone) 92-97. Even after extensive steroid treatment, my infected Bowel had to be removed (about 6' in total and a valve of some sought!) since this I've been an out-patient and monitored... Yes, I have my lows, ups and downs and the occasions of excruciating Pain and anguish ! BUT, and this comes back to Chrohnzie Girl's original Post :
We are in the hands of the Doc's, Surgeons and Medical Staff, we have to trust and Go with the flow ! Try and Relax and be happy it's 2013 and not 1913 because we all would have been ######... I'm now a 38yr old Diagnosed and Operated on and filled with medication, but now keeping well and "Running Marathons..!" So, in simple terms, keep Strong and have Faith and Good Luck from the UK x
 
Thank you, all of you for your support and kind words. So sounds like stayin postive is the key. Funny my stoma nurse also said the same thing if I want a speedy recovery. I most def keep u guys posted. I love that I now I have a place to talk bout my Crohn's. The good, bad and the ugly and ppl actually understands. I must say its a good feeling! Thanks guys! XXX
 
You will be amazed with how good you feel once you have your stoma.

I didn't have a choice, but now if anyone would ask me, I'd say do it.

It was hard in the beginning...I couldn't look at it for about 2 months... I had a great ostomy nurse that helped me through it. It's not a big deal to take care of either... You'll get the hang of it.

Mine is temporary... Hopefully, she'll be reversed in the fall. Even if she couldn't be reversed, I'd still be ok with her! (I named her Ginger)

Good luck and take care! :)
 
My stoma nurse gave me several different brands of bags to try out before surgery so I could sort of see what it was going to be like and also see if I had an allergic reaction to any particular brand. I filled them with water and walked around like that for a few hours at a time and then practiced emptying them. It's not exactly like the real thing, but it's a start. I was able to eliminate a couple of brands because I did have an allergic reaction to the adhesive, but I'm prone to that sort of thing anyway.
 
Hi Ginger is her name. I remember reading your story bout having a hard time in the beginning and how undesirable you felt. Sounds like u have an amazing hubby and family. I'm so glad to hear how well it worked out for you. But if I remember correctly u went in the hosp feeling icky and left w a stoma. I can understand now why it took a lot longer to get used to it. I do believe I have an advantage bc no one is making or taking away anything from me. It's strickly my choice. I DO believe w/o being a part of an amazing support group I may have made the wrong decision for myself. I thought I knew all I need to kno bout Crohns. Turns out idk much at all. Thanks again all of you for opening my eyes and mind.

@ 2thFairy, that is such a great idea!! I'm def gonna ask bout seeing if I can do that and get alittle practice befre the real thing. :)
 
I don't have diarrhea either. More constipation too. And mushy stool, with lots of mucus and blood. It's silly, coz i feel like i am not "sick enough" to have a surgery, becaus i don't have diarrhea.

Please let use know when you have you op date :)
 
Crohnzie girl if you look back thru the stoma posts there are a few realating to preparing for having a stoma, what to ask your surgeon, where to get the stoma sited etc. Well worth your time to have a look and see if any of it is helpful for you. If I can find any I'll post them here for you.
:heart: anna
 
Hi Crohnzie Girl!
Just to add to what the others said, I too like my stoma. I don't know if I love it as I can't recall the before. I'll officially have spent half of my life as an ostomate as of this year and well, even though there are unpleasant events you may have to face due to it, it will bring relief on so many other points. I assume it is better to go on your own in a decent condition that getting the surgery done when you are totally agonizing and out of solution. Anyway, all I can say is that it should not be keeping you from anything thereafter. You will have your fears while adapting to it, these are normal. You'll probably encounter some frustration, which are also normal and part of the process but you shall enjoy the comfort of eating freely and spending day without pain too. I would probably never would have been able to leave for trips without sanitary conditions if it was not from my bag. I guess I could never have done cycling tours without it either. To me, it brought me a quality of life even before I had the time to wish for it.
 
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Thanks Anna, I'd really appreciate that. I be happy to take a look. Thanks!

@ PsychoJane, its amazing how you all have adapted to this lifestyle and look at it as an opportunity. When I first found out like a mth ago. I was at work on the phone w my nurse, I balled my eyes out. I thought I had to file disability and be a useless mother. I was a wreck! I wish I had somne to talk in person what its like. But, this forum is the next best thing. I now see some light at the end of the tunnel.
It's good to kno these fears are normal. I still can't believe this is happening to me. I'm still worried out of my mind. Most of all I want so badly to plan vacations and be there for celebrations rather than in bed missing out on them. That's my biggest hope!!
 
I can't comment on how I felt before my surgery as my surgery was an emergency one, so the decision to have a stoma was made by the doctor and not me. But I would imagine that your feelings are completely normal...I'd likely be going out of my mind too. But I don't regret the decision one little bit. I used to have horrible constipation (hence the emergency surgery...I hadn't gone for 8 days and had perforated my sigmoid colon). Going to the bathroom was always soooo painful and quite often fruitless. Now, I'm so regular and pain free it's hard to believe that I ever lived any other way. The surgery is hard, don't get me wrong, and it takes a while to get used to your new body and the way it works, but you'll be amazed at how well you feel and how much you can do with a stoma! I do everything...swim, play sports, do things with my stepkids...it's incredibly freeing.

Good luck with your surgery. We're all here for you if you need to vent or have any questions...
 
Oh mygoodness, Nyx I'm so sorry that happened to you. I can't believe the severity of this disease. I really didn't take serious in the beginning. Granted I was only 15 and thought u was superior and nothing will happen to me. I wish I had taken it more serious now. Perhaps I could've avoided now or maybe not so soon. Well if anything, I give it much respect now that's for sure.

I'm so glad you are able to do all those activities now. Think you're more normal than I am at this point. Lol. Fingers crossed I soon will be doing "normal activities" as well! (>.<)
 

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