Will I ever feel normal again

maimmie · Nov 28, 2012

I'll try to make a long story short. I've had crohns for 8 years, had one right hemi colectomy in 2010 and now have developed perianal issues, fistulas and absesses, recto-vaginal fistula. I'm currently taking cypro and flagyl, weaning off prednisone and in a trial for vedolizumab. I have already been through remicade and humira. I had setons put in a couple of weeks ago and was examined while I was out.
The doctor basically told me things are as bad as we want them to get and to let him know when I'm ready to have ileostomy surgery.
I have a follow up appointment with the surgeon tomorrow and I assume we will discuss when to schedule surgery.
I'm in a very dark place right now. I'm in pain every day. every bowel movement is almost too painful to take.
is there really a light at the end of this tunnel?
will I ever feel normal again?
I need some encouraging words right now from the people who have gone before me.
I feel like doctors keep promising me things will make me feel better and so far it just hasn't happened for me.
Can I feel normal with an ostomy? I know there are so many people on here who make it sound so do-able but I'm so afraid I'm just not tough enough.
right now I hardly leave my house. Partly because of pain and partly because I am obsessed with what I eat and when it will come out and how much it will hurt and how hard it is to clean up.
will I ever enjoy food with out thinking about these things again??
I really don't feel like I will, even with an ostomy. seems there are constant concerns with those too.
I'm trying really hard to find my positive attitude, but I just can't seem to right now.
I really need to get it together. I have a husband and son I really want to be a good wife and mother to.

Terriernut · Nov 28, 2012

:hug: You ARE tough enough to handle ostomy surgery if that is what will give you your life back. Because alot of us on here will tell you once the teething pains are over, we actually GOT a life back.

Before Stan I couldnt even manage to go the store. I managed work, but I honestly think the angels must have been with me when I was driving, because that was the only time I didnt have an 'accident'. Now I have a normal life. Before the surgery...no life at all! I lost alot of 'friends', because I simply was unable to engage in any social life whatsoever. Now I eat what I want, go where I want when I want, travel, you name it. Before Stan...impossible.

You have a toughness in you if you pull it out. We all do. Although it can be a tough surgery, it was a lifesaver for me. I think if you have to do it, prepare yourself as much as possible before hand. And then you will come out the other side being a new woman. :heart:

maimmie · Nov 28, 2012

Thank you Misty!
You are always one of the ones there with encouraging words.

Hobbes650 · Nov 28, 2012

Hi Maimmie, I've had my ielostomy for over 20 years now. I was in my early 20s when I had that surgery. The biggest challenge was mental, and the more you get your life back the better you will feel. There is an adjustment period where you learn what kinds of ostomy pouches and supplies work best for you but don't let that bring you down. After ileostomy surgery you will feel much better- your diet will get back to normal (although I still stay away from popcorn), your energy will come back quick and you'll be good as new. You won't be worried about the food you eat nor the pain you experince now- it's all nice an easy. And please don't think of choosing to have surgery as a failure. Suffering from IBD to the point where surgery is even considered is certainly tragic, but not a failure. Agree with Misty that it certainly toughens you up, but as you know IBD is also a very humbling experience, so you're already well prepared to "handle" the ilestomy surgery.

IF you do end up having surgery, there are lots of good resources and people on this site who can help answer any questions. For me the best resources were the product specialists the manufacturs have- like Hollister, Convatec, etc. Once the stoma has stopped shrinking after surgery give them call and get some free samples. There are many different kinds of pouches and everyone seems to have a different preference. These specialists will ask you questions (like how tall the stoma is, etc) and you'll learn quickly what you like and what you don't like. Please keep us posted with your progress!

2thFairy · Nov 28, 2012

Ileostomy was definitely a blessing for me. I have had such good results with mine that I have put off having reversal. The surgeon gave me the okay for reversal back in April, but I plan to keep the stoma long term. No more abdominal pain, no more mad dashes to the toilet at all times of the day and night, finally getting to eat what sounds good instead of just what is tolerated, BEING ABLE TO LEAVE THE HOUSE, etc.

It's such an individual experience, however, and not everybody is pleased to have one. Do as much research as you can since you have time to decide, and be honest with yourself about what you think you can and cannot handle with an ileo and without an ileo.

Nyx · Nov 28, 2012

I can't add much beyond what everyone else has said. Like you, prior to my colostomy, going to the bathroom was so painful and I hated having to go. I didn't leave my house, even to do mundane things like getting groceries or going out to see friends. Now I do whatever I want, whenever I want...and the eating! Well, lets just say that I'm not skinny any more...lol Don't get me wrong, the surgery and recovery were hard, but it's all a distant memory now and was well worth it.

I hope you feel better about possibly having the surgery. I think you'll find that you're tougher than you think.

maimmie · Nov 28, 2012

Thank you all.
I'm very overwhelmed by the recovery proccess of the surgery and I'm not looking forward to even more pain.
I wish it weren't so close to christmas time. If I have surgery before xmas I doubt I'll be in very good shape for visiting and eating and celebrating but on the other hand I'm not in very good shape for those things right now.
I don't think I want to put it off any longer. I'm pretty tired of all this and I'd like to get on the way to healing. I'm so sick of being sick!
I want to do things with my family again.
How long after surgery were you able to enjoy a meal or leave the house?

2thFairy · Nov 28, 2012

The first 5 to 7 days are probably the hardest for recovery, as your bowels are waking up and adjusting. Once you are eating solid food (before hospital discharge), things progress pretty quickly. Keep in mind that the pain you will experience from surgery is a different type of pain from what you are having now, not necessarily in addition to the pain you are having now. And no more urgency!!!! You can truly recover while laying in bed or sitting watching TV without worrying about rushing to the toilet. wooHOO!!!

2thFairy · Nov 28, 2012

My hospital stay was long due to heart issues from anesthesia and some dehydration, but I was eating solid food 5 days after surgery. Three weeks after surgery, I was out getting groceries with my husband.

Hobbes650 · Nov 28, 2012

maimmie said:
Thank you all.
I'm very overwhelmed by the recovery proccess of the surgery and I'm not looking forward to even more pain.
I wish it weren't so close to christmas time. If I have surgery before xmas I doubt I'll be in very good shape for visiting and eating and celebrating but on the other hand I'm not in very good shape for those things right now.
I don't think I want to put it off any longer. I'm pretty tired of all this and I'd like to get on the way to healing. I'm so sick of being sick!
I want to do things with my family again.
How long after surgery were you able to enjoy a meal or leave the house?

Most likely, you'll be going home already eating real food (not just liquids or the soft mushy stuff). But even then, you should eat smaller portions and avoid really hard ruffage stuff- introduce those things slowly and let your body tell you how it feels. I think after a few weeks or so of being home you'll be able to eat anything without feeling any ill effects. As for leaving he house, nothing is setting you back from that. If you're up and taking walks while in the hospital, you'll be fine- all depends on our energy level. You shouldn't be lifting anything over a couple of pounds or so, but nothing should be keeping you stuck at home.

Nyx · Nov 28, 2012

Like 2thfairy said, the first week is the hardest. I didn't find the pain that bad at all though. I was off the Demerol after about 5 days and only had regular old Tylenol after that. The worst part for me was the dizziness when they get you out of bed to walk around...that and the 2 IV poles I had to lug around with me (I had complications from the surgery so was on TPN, antibiotics, blood thinners, pain killers, and saline). I was in hospital over Christmas and got to eat my first solid meal on Christmas Day...it was the best turkey I've ever had (or I thought so at the time...lol). By about day 7 I had my fiance bringing me in outside food (Wendy's hamburgers were sooooo good!!). I was in hospital for 24 days, and took my time recovering. But I'd say that about 2 weeks after getting out of hospital I was out and about visiting friends and doing my own shopping.

Terriernut · Nov 28, 2012

I was the xmas turkey in 2010. Surgery the 22nd of December. I remember laying there afterwards thinking...wow, I can sleep! (if it werent for the babbling nut of a woman across from me!) I didnt have to move (aka...RUN) to the loo! Bliss!

My bowels are lazy after surgery, so come xmas day they still werent working. Undeterred...I demanded xmas dinner anyway. I have a look about me. They didnt dare say no. I ate my xmas dinner even though I shouldnt have. It was heavenly! (I hadnt eaten for about 2 weeks) I was fine, didnt get sick. Stan woke up at 4am on the 27th. Yes, I remember it well. Once home (on New Years Eve) I quickly got to grips with Stan and the gear that went with him.

Back to work in January. Feeling normal...I admit it 3 months post surgery. It's the fatique that gets you. Mind you...I was very close to death at the time of the surgery, and I'm an old bird of 50 now. The longer you wait, the sicker you are, the longer the recovery time. It was 6 months afterward that I woke up and realized I was not only back to normal...hell honey, I was better than I ever remembered being!!!!

maimmie · Nov 28, 2012

ok you guys are making this sound pretty good actually! lol
I so look forward to no more leaking out of my fistulas and for them to stop hurting.
Were fistulas the cause of any of you guys needing surgery? did they start to feel better fairly soon? I've heard stories of people still having perianal issues after having a stoma and that scares me too. to go through all this and still not get better.
We have concert tickets for feb. 14th and my hubby is really concerned about me being well enough to go to that. I've already missed so many things from being sick.
i'm probably getting ahead of myself thinking about that since I haven't even talked to the surgeon yet and found out when I may have surgery. that's how I work though. I over think and over prepare for everything.

Nyx · Nov 28, 2012

My surgery was an emergency...I perforated my sigmoid colon and distended my bowel. But, my recto-vaginal fistula didn't hurt any more after surgery. I still have it, but since there's nothing going through it, it doesn't bother me at all. I haven't had any perianal issues either and I still have my stump.

Terriernut · Nov 28, 2012

I had a fistula through my fallopian tube. Deep joy I tell ya! But without medication, some folks still have fistulas even after the surgery. Sorry.

As for the Feb concert, the sooner the surgery the quicker you are back on your feet!

Hobbes650 · Nov 28, 2012

My j-pouch failed which led to me needing the ileostomy. I was dx with Crohns in May this year, but my original dx was UC which means I most likely had/have Crohns Colitis. Chronic pouchitis and abscesses were my main j-pouch issues. Unfortunately, that's one of the small joys of having UC- there's always that little tiny chance it's really Crohns Colitis. If you have an ileostomy you won't have (or shouldn't have I should say), perianal issues since the stoma doesn't go there. After sugery, your bum will close up on its own, but if it doesn't close all the way the surgeon will have to fix it- small procedure (I even went home same day).

Feb 14 is quite a distance away from your Dec 22 surgery so I would expect you to be just fine. As always with surgery, the healthier you are going in the easier the recovery. I would think you'd even be home for New Years (just depends on when your gut wants to eat).

Hobbes650 · Nov 28, 2012

I would certainly agree with 2thFairy on this. Even If there were some alternative for me I would keep my ileostomy. No frills, no mess, no pain, and now worries about rushing to the bathroom. Why fix what isn't broken is my motto.

2thFairy said:
Ileostomy was definitely a blessing for me. I have had such good results with mine that I have put off having reversal. The surgeon gave me the okay for reversal back in April, but I plan to keep the stoma long term. No more abdominal pain, no more mad dashes to the toilet at all times of the day and night, finally getting to eat what sounds good instead of just what is tolerated, BEING ABLE TO LEAVE THE HOUSE, etc.

It's such an individual experience, however, and not everybody is pleased to have one. Do as much research as you can since you have time to decide, and be honest with yourself about what you think you can and cannot handle with an ileo and without an ileo.

Snap · Nov 28, 2012

:rosette1: Keep your chin up, Maimmie! My ileostomy surgery was almost 11 months ago--definately a blessing. I cannot believe how it has changed my life--amazing. I am not in pain, no infections, no raging, bloody diarrhea! I have energy to actually enjoy life now--I am a wife and mom to 2 boys, and have a full time job. I agree with the others--you can do it! Surgery recovery is hard---but it's hard now, girl! How easy is life now? Once you are home and the blasted drains are pulled out of the bottom of your butt cheeks, the staples and stitches are out, and you master caring for the ile---it's HOME FREE, baby! Yes, there are minor inconveniences associated with the ileostomy--but it's also a minor inconvenience to do dishes, dust, pluck your eyebrows, etc! LOL. Sending good thoughts your way.:heart: Dana

littlefreebird · Nov 28, 2012

Had to comment as my story is quite similar. My crohns was always in the last section of the colon and rectum I also developed a recto-vaginal fistula. The doctors told me there wasn't really another option. I was upset but accepted it very quickly I think due to the fact that I had been so I'll for so long it was almost like my life was slipping away each day.

You are strong. You are getting through what I remember as a nightmare, you're strong enough to cope with the daily pain of the fistula and bowel movements, that makes you MORE than strong enough to cope with post-op pain (which they control in hospital with pain killers anyway)

As for coping with the bag, its scary because it's new! You will be amazed at how quickly your daily routine adapts so that it is not alien anymore it's just part of you.

I'm so sorry you're feeling like this if you have any questions you can message me anytime.
Hannah. Xx

2thFairy · Nov 28, 2012

Another thing I can do now with an ileo that I haven't done in 8 years----get a job outside of the house. I have been very fortunate to have been able to work from home through all of my flares and surgery, but it is BECAUSE of the ileostomy that starting next August, I will be going back to school to learn a new trade (surgical tech!!). I wouldn't have dared to do that before!

Jaano711 · Nov 28, 2012

Hi maimme

I know exactly how you feel.

Sounds like me 6 months ago. Has the fistulae abscesses and fissures front back etc. couldn't be surf where the poop was coming from. Didn't leave the house. Would be in tears on the toilet up to 30 times in 24 hours.

Now 3 1/2 months post permanent colostomy surgery I feel even better than I ever thought I would. My colostomy is more like an ilieostomy due to short bowel syndrome. But it is still far less of a hassle compared to a leaky rear end.

I have had a few issues with healing and am still working through but even so I am in a better place than I was 12 months ago.

Surgery is challenging especially this time of year but you need to keep reminding yourself that thus op should make your life far better

Good luck at the surgeons.
Janette xxx

Let us know how you get on.

maimmie · Nov 28, 2012

I can't tell you how glad I am that you are all here. just from reading other peoples stories on this site I know that I will not be alone in this and I can come on here and vent and get support and advice whenever I need to.
I'll update you all tomorrow after I see the surgeon. i'm nervous.

Susan2 · Nov 29, 2012

Hi maimme.:bigwave:

No one can promise you a perfect stoma, but the people on here who are having serious problems are very much in the minority. Some have problems for a while, but eventually have some minor corrective surgery or just find the system and products that suit them and their stoma. As you will have seen from the answers so far, many people have found that such surgery totally transforms their lives.

After many years of suffering from Crohn's, I had to have emergency surgery for my ileostomy and, because I had left it so long, I had a correspondingly long recovery period. But now I can do almost anything that I want - snorkelling in the Galapagos, going on safari in Kenya, Tanzania and Botswana, climbing the pyramids in Egypt. Because I lost all my large intestine and some of the small, I can't eat and drink anything that I want, but certainly a much wider variety of food than pre-stoma. And I still have some "accidents", but they are few and far between.

If this sounds better than the life that you are having at the moment, Maimmie, think seriously about what your doctor is suggesting. :hug:

maimmie · Nov 29, 2012

So I will be joining the stoma club. I have to call tomorrow to offiically book the date. I can do dec 18th or 26th or jan 8th. I'm not sure what I want to do. Do I want to be just out of the hospital at xmas? Do I want to spend xmas being nervous for surgery? I don't think I want to wait until january. Ugh I just don't know. No matter what I'm very scared.

Terriernut · Nov 29, 2012

I cant answer that! But I can make one observation from my time in hospital over xmas....there was hardly a Dr there and all the nurses were mostly temp staff. So...

You will want to make sure you see your stoma nurse beforehand, and check when she is going on vacation. You need to make sure that the staff you need are there for you.

Hobbes650 · Nov 29, 2012

I think if the surgery is the 18th that's cutting it close to xmas- if your gut doesn't want to start eating for whatever reason, you'll spend xmas in the hospital. But it you are feeling misearable then who cares, get it done earlier. Either way, you will soon feel sooooo much better!

Jaano711 · Nov 29, 2012

Hi Maimme

Decisions, decisions, decisions! It is hard enough getting your head around the surgery without being asked to choose a date!

I suppose either way Christmas is going to be fairly miserable. if you have the surgery before christmas, then you will be feeling crappy, but if you wait until after christmas, you will feel like you do right now. That is in pain, leaky and anxious about your up coming surgery add in to that family members being overlly sympathetic due to your upcoming surgery!

I suppose you have to decide which option you can tolerate the best.

I do feel for you. I can remember when surgeon told me it had to happen, and as soon as possible, and then he went and got sick and dissapeared. His locum called me, confirmed predicament and said she would call me with the details. I sat by the phone for 7 days waiting to hear. I felt physically ill everytime the phone rang!

Let us know what you decide so we can be here to support you.

Sending strength and love your way.
Janette
:ghug:

maimmie · Nov 30, 2012

ok its officially booked for Dec. 18th and now I'm so nervous I could throw up.

Terriernut · Nov 30, 2012

:hug: I can't fix your nervousness, but I can say we're here.

maimmie · Nov 30, 2012

So what should I be doing over the next 18 days to prepare myself?

Hobbes650 · Nov 30, 2012

maimmie said:
So what should I be doing over the next 18 days to prepare myself?

Go the spa! Seriously, taking your mind off eveything is the best thing. Or perhps make a grocery list of things you don't eat now but would LOVE to start eating again in a few weeks.

I could recommend some care products and cut-to-fit pouches, but the hospital will probably give you supplies to take home and that's a good starting point. I do like to use 2-inch paper tape to provide some reinformcement and you can get that at any drugstore (although, it's much cheaper to buy it online from the vendor you choose to buy your pouches at). Hang in there, almost done!

Terriernut · Nov 30, 2012

The best thing to do is ask to be seen by the stoma nurse that will be helping you. You can also see if they will give you a 'fake' stoma to practice with.

Can you tell me if it will be open or lapro? Colostomy or Ileostomy? Read up on everything. And get to the beauty therapist and the hairdresser! Wax, manicure, hair cut, etc. Dont laugh! You will not want to do these things and you will feel like a Yeti.

Jaano711 · Nov 30, 2012

Hi maimme
At least you now know when. I recomend going to this page http://www.crohnsforum.com/showthread.php?t=22958&page=2
There are some great ladies pre surgery tips. It was great, all the jobs took my mind off the surgery

As a bonus, I ran into an old friend 2 days before the op and she couldn't believe how fabulous I looked.

Hobbes650 · Nov 30, 2012

Jaano711 said:
Hi maimme
At least you now know when. I recomend going to this page http://www.crohnsforum.com/showthread.php?t=22958&page=2
There are some great ladies pre surgery tips. It was great, all the jobs took my mind off the surgery

As a bonus, I ran into an old friend 2 days before the op and she couldn't believe how fabulous I looked.

Wow. I was real curious to see what's inside that link and being a male, got the door slammed in my face. Must be a lot of talking about shoes. :biggrin:

Terriernut · Nov 30, 2012

Thank you!! I just moved the thread to the surgery subforum. So now the 'guys' can read it and be jealous (not)

Susan2 · Nov 30, 2012

On a note about more serious things - get yourself as fit as you can. Lots of sleep, moderate exercise, nutritious food. The healthier you are when you are operated on, the more chance there is that you will heal better and quicker.

But I always have my eyelashes tinted before I go ito hospital!:ybiggrin:

2thFairy · Nov 30, 2012

I made a ton of applesauce before surgery and froze it in single serving size freezer cups. It was heavenly after I got home from the hospital and is one of the top allowed foods after stoma surgery.

maimmie · Dec 4, 2012

Ugh 2 weeks until surgery. I'm so nervous. I keep forgetting why this is a good idea and questioning everything.
My bum is so painful these days and I feel like i'm using too many pain killers. I keep thinking I may need to try to get into surgery sooner because of how much it hurts but then a get all scared and think nope I'm not ready anyway.
How do you ever mentally prepare yourself? is it normal that I'm going into surgery still not sure its the best choice?

2thFairy · Dec 4, 2012

Oh my goodness, I flip flopped in my decision about surgery about 20 times a day up until the night before surgery during the prep. Somehow, I was in a calm state at that point, with only flutters of "ohmygod ohmygod ohmygod" every now and then.

maimmie · Dec 4, 2012

I seriously feel like I could throw up and I'm sure its only going to get worse as it gets closer. ugh and what was I thinking adding the stress of this to the stress of getting ready for Christmas!? I will never get everything done!

Nyx · Dec 4, 2012

Don't worry about Christmas! Your family and friends will be so happy that you're out of surgery and doing well that Christmas will take care of itself...just do what you can and don't worry about the rest.

maimmie · Dec 4, 2012

I got my appointment to meet with my stoma nurse today. They don't come out to my area so I have to drive a half hour to them on the 14th.
Everyday this gets a little more real and I get a little more freaked out. The waiting is the worst! well maybe not the worst but its definitely no fun.

maimmie · Dec 11, 2012

One week!
Just wondering for those of you that had fistulas and abscesses, when did those stop bothering you?
mine are so painful right now and bleeding and draining a ton! Its a good reminder as to why I'm having surgery anyway.

Susan2 · Dec 11, 2012

Only a few more days until your appointment with the stoma nurse. Have you written a list of the questions that you want to ask?

maimmie · Dec 11, 2012

No, I know I need to do that. I'm sure if I don't I'll draw a complete blank when I'm there.

Nyx · Dec 11, 2012

maimmie said:
One week!
Just wondering for those of you that had fistulas and abscesses, when did those stop bothering you?
mine are so painful right now and bleeding and draining a ton! Its a good reminder as to why I'm having surgery anyway.

Mine felt better almost immediately (right after surgery was a write off and the drugs were so good that I didn't really care what I had going on...lol). Since I have a recto-vaginal fistula, it felt better right away since there was nothing feeding it after my plumbing was disconnected so to speak. I still have it, but it's dormant and doesn't bother me at all.

maimmie · Dec 14, 2012

I had my meeting with my stoma nurse today and of course though I had a list of questions all ready to go, I forgot it at home.
Oh well I really feel most of my questions have been answered on this site anyway.
She did give me a couple different bags to practice/play with. and she marked my stomach where the stoma will most likely be.
It definitely makes it extremely real!
Afterward we stopped for lunch and as I was eating slowly and thinking I should pack the rest up to go home another thought crossed my mind. Its going to be so nice to eat my food and not worry about how its going to effect me. How nice will it be not to think about how long I have to get home before my food comes back out.
I may be beginning to see how this could be my liberation.
I'm still completely terrified of the unknown though.
4 more sleeps!

Terriernut · Dec 14, 2012

It's gonna be ok! Now I will warn you....you might gain weight!

You might be able to enjoy food and life!

It is a tough surgery, and we understand this isn't easy. But, you aren't going through it alone.

I hope this surgery does give you every chance to feel well again!
:kiss:

gmm · Dec 14, 2012

from someone facing the same dilemna, best of luck, could be the best christmas pressie youll get

Jaano711 · Dec 15, 2012

It is perfectly normal to be terrified of the unknown. If you weren't I would probably be really worried.

Hold onto the liberation and all the good changes that this operation will bring you. I know that my positive hopes for the future where what got me through. It may not be easy at times but I believe it is the best crohns op I have had in terms of what I have gained. Yep the gaining weight part is a bit of a worry. But food is so much tester when it's not associated with pain.

Wishing you the best possible outcome. As GMM said it may well be the best Christmas pressie, but might be in the new year when you realise this.

Thinking of you
Jano

bigtruck · Dec 15, 2012

Keep your chin up and good luck, it will all be worth it.

2thFairy · Dec 15, 2012

Hey bigtruck!!! Long time no see!

Maimmie, you should make a list of all of the food you are going to eat when you are fully recovered....all of the food you have been denying yourself. There will be some restriction for the first couple of months while your stoma shrinks down and settles, but no more restrictions due to "where is the nearest toilet"!

2thFairy · Dec 15, 2012

Oh, and in case no one mentioned it before, CHEESECAKE is good for thickening up your output. Yes....CHEESECAKE!!! wooHOO!!

maimmie · Dec 15, 2012

That works for me! Cheese cake is my favorite! It will be nice to have a good excuse to eat it!

bigtruck · Dec 15, 2012

Hi there miss fairy how is it all going? I've not been about in a while.

Jaano711 · Dec 15, 2012

Hi Bigtruck
Good to see you back. Hope everything is going ok with your health.
Merry Christmas
Jano

Jaano711 · Dec 15, 2012

Hi Maine
Yep I've been experimenting with cheese cake recipes. Also baked rice is also excellent to thicken output, and really easy to make.

maimmie · Dec 17, 2012

Okay so tomorrow is the big day. I'm quite nervous. I don't feel ready at all right now! My bag is mostly packed and so is my son's all ready to go to grandma's house for a few days. I've got my computer loaded with movies and tv shows to keep me busy. My hubby surprised me with a new blackberry playbook last night and has downloaded books for me to read. I'm feeling very lucky to have him. He is so supportive and assures me he doesn't care about me having a bag. He just wants me to get healthy. I wish I could be as ok with it as he is. Why is it everyone else is so sure this is going to work out and I can't stop expecting the worst. I'm so sure I'll be one of the ones who has complications, dehydration, infection, leaks, rashes. I'm convinced I'll get them all! I guess I'd rather think the worst and be pleasantly surprised if it's better then that.
Ugh anyway, just venting.
I'm so glad this Site exists!
My nerves are making me crazy today.
Will I have a minute to talk to my surgeon before they put me out. I'm not sure if they are doing a loop or end ileostomy and I'd like to ask. I think I'd prefer an end. I don't know if I have any say. I'd also like to tell him which abscesses are bothering me and see if he can drain them. He said he might drain the one by my tailbone while I'm out but that's not the one that's bothering me most anymore.
I just have so much going through my mind today. Sorry for the long winded ramdomness of this post.
Oh and my real name is Amy. It's easier to type then my screen name! LOL ok I'm gonna stop now.

2thFairy · Dec 17, 2012

Amy, even if all of those bad things happen, you are already ahead of the game by being informed. I only had a few complications while in the hospital, but as each one came up, both my husband and I reminded ourselves that it could happen and were able to stay calm and just deal with it. If it hadn't been for the books I read, I wouldn't have known what COULD happen, and if it hadn't been for this forum, there is no way I would have been as calm about them when they did happen. You should request by every hospital staff member you see, if needed, that you would like to speak to your surgeon before things start. Surely someone can make it happen. It's too important not to. You might even call their office today and make a request that the surgeon call you back today.

Terriernut · Dec 17, 2012

Oh Amy! I can imagine how worried you must be! I was scared too.

The odds are good that you wont have any problems whatsoever. So....do what you can to relax. I know, impossible!

But you are clearly supported at home, you are supported here. So one way or another, it will be ok!

Hope you get a chance to speak to the surgeon first as well. If all else fails, put a post it note on your bum!
:ghug:

Nyx · Dec 17, 2012

Good luck tomorrow! Try not to worry too much, sounds like you're in good hands...and like 2thFairy said, you're pretty well informed about what could happen so you can deal with it. When I had my surgery it was an emergency and I didn't even know what a stoma was till I had one...and I turned out pretty good...lol

CheerBear12 · Dec 17, 2012

Hi my surgery saved my life my bowel perforated and wasn't doing me any favours what so ever. I basically lived in the bathroom. I didn't realise how ill i was at first i didn't want it and surgeons only told my parents that it was too save my life. i was in such a state as it was without being told that. i found out the next day. It took me three months to recover and three months before I could do anything for myself I was so weak and I needed to build up strength. The pain was there for three and a half months. Was the worst thing I have had to go through but it's all worth it in the end I feel great now it's changed my life for the better. Thinking of you hope it goes well xx

maimmie · Dec 17, 2012

LOL post it note on my butt! Might not be a bad idea. Did I mention how glad I am you guys are all here?

CheerBear12 · Dec 17, 2012

Oh I forgot to say I've got my 2nd op in may

;( so know exactly how you are feeling

I don't want this one either;( keep us posted x

Jaano711 · Dec 18, 2012

Thinking of you Maimmie. Hope you don't have to resort to the post it note, but then again at least he will see it and remember you.

Hope things went perfectly.

annawato · Dec 18, 2012

Amy, I hope your surgery went well as I'm sure it did. I know you won't feel like posting for a few days at least but when you do we can compare notes. i got my ileo on 23 Nov and have been home for a week now. Still recovering but so nice to be home. Anyway I'm thinking of you and hoping these next few day aren't too horrendous and even if they are it will be worth it once you regain your energy and life and get rid of those darned fistulas. All the best.

2thFairy · Dec 18, 2012

Good luck today, maimmie. Thinking of you and sending you lots of good energy! :rosette2:

Susan2 · Dec 18, 2012

I had somethimg special that I wanted the surgeon to do when I had my proctocolectomy (tell you about it later :wink

and all the way down the corridor on the way to the operating theatre I kept reminding the registrar, who was accompanying me, "Don't let him forget what he promised to do". And they tell me that the first thing that I said, when coming out of the anaesthetic was "Did he do...?

Nitaboo313 · Dec 18, 2012

I just had my ilestomy surgery on December 11. Scheduled to be reversed in 3 months.I was finally sick of being in pain, multiple hospital admissions, and not being able to enjoy my husband and child. I have not had one crohns pain since the surgery. The incisions are still sore. Getting use to the bag is a big adjustment and finding the right appliance can be frustrating. I have an ostomy nurse visiting me twice a week which is helpful. I had my first leak two days ago while sleeping, not fun! I'm sure once I get the hang of it, I will be fine. It's only been a week so I still have a long way to go. You will be fine after surgery. The key is to stay positive and realize this surgery will give you your life back! I also found it helpful to name my stoma "Stella" because she's. gonna give me my groove back (The Angela Bassett movie)! Lol. Good luck with surgery...

2thFairy · Dec 18, 2012

Welcome to the forum Nitaboo313!

Terriernut · Dec 18, 2012

Welcome Nita and Stella! You go girl!

Susan2 · Dec 18, 2012

Hi Nita and welcome. :bigwave:

Sounds like you have a good attitude and will work to get the best from your new situation.

2thFairy · Dec 18, 2012

Oh, and maimmie....enjoy the happy drugs while you can. You may not need them, but enjoy them anyway. HAHAHA!!!

Terriernut · Dec 18, 2012

2thFairy said:
Oh, and maimmie....enjoy the happy drugs while you can. You may not need them, but enjoy them anyway. HAHAHA!!!

Amen!

Hobbes650 · Dec 18, 2012

2thFairy said:
Oh, and maimmie....enjoy the happy drugs while you can. You may not need them, but enjoy them anyway. HAHAHA!!!

And if you don't need them, save some for me. :dance:

Hobbes650 · Dec 18, 2012

Nitaboo313 said:
I just had my ilestomy surgery on December 11. Scheduled to be reversed in 3 months.I was finally sick of being in pain, multiple hospital admissions, and not being able to enjoy my husband and child. I have not had one crohns pain since the surgery. The incisions are still sore. Getting use to the bag is a big adjustment and finding the right appliance can be frustrating. I have an ostomy nurse visiting me twice a week which is helpful. I had my first leak two days ago while sleeping, not fun! I'm sure once I get the hang of it, I will be fine. It's only been a week so I still have a long way to go. You will be fine after surgery. The key is to stay positive and realize this surgery will give you your life back! I also found it helpful to name my stoma "Stella" because she's. gonna give me my groove back (The Angela Bassett movie)! Lol. Good luck with surgery...

You have a wonderful attitude! You'll be fine, so I won't wish you any "luck". :wink:

carey965 · Dec 18, 2012

Just so you guys know i am Amy's husband and she is out
Didnt go as smooth as hoped but the doctor seems to be positive so heres hoping we can look forward to good health for a change

2thFairy · Dec 18, 2012

Thanks for the update!!! Give her lots of gentle hugs for us when she is more awake.

carey965 · Dec 18, 2012

She is in a bit of a delotted coma right now. But i will let her know your thinking of her

Terriernut · Dec 19, 2012

Thank you so much for letting us know. We're all rooting for her here!

CheerBear12 · Dec 19, 2012

Thanks for the update and keep us updated on her progress

maimmie · Dec 19, 2012

Well yep I'm still alive. Enjoying my drugs! My biggest complaint at the moment is how freaking hot it is in here! I'm a puddle of sweat! Thank you all for your amazing support. Will post more when my energy is up more.

2thFairy · Dec 19, 2012

It's so good to hear from you and that you are doing relatively well thus far. Big hugs to you and to your husband for letting us know how you were getting on yesterday!

maimmie · Dec 19, 2012

Nitaboo313, I was thinking of calling my stoma Stella as well. I dunno, for some reason I think its a girl.
P.S. I'm already having some lovely output. That's pretty good right?

2thFairy · Dec 19, 2012

Excellent! I didn't have output for 3 days and it did cause a problem, so yes, that is good!!

Terriernut · Dec 19, 2012

Great news that it's working already! My bowels are "lazy" after surgery. I think you are doing amazingly well so far!

Enjoy those drugs darlin! So good to hear from you!!!
:kiss:

Nyx · Dec 19, 2012

Glad to hear from you and that your stoma's working already! Mine was stubborn and didn't do anything for 4 days...little bugger...lol

CheerBear12 · Dec 19, 2012

Enjoy the drugs! And glad your stoma is working already mine took a couple of days too start working.

Nitaboo313 · Dec 19, 2012

Amy,

That's great that you are having output already!

That means you will be home in no time. Mines started working the second day after my surgery. I only spent 4 days in the hospital, they kicked me out because I was doing so well. Stella is a great name and believe it or not naming it makes it easier easier to talk about. I finally put of regular cloths yesterday and made a trip to the grocery store with hubby. I was surprised my ostomy bag wasn't showing at all. :heart: It made me feel good. I had another leak last night, but I caught it and changed everything before a mess! :stinks:I think I have to switch appliciances. Currently using Convatec modable, hollister adapt barrier ring, holister adhesive remover, barrier wipes and a little Convatec paste. Hopefully I find something that works soon. My stoma only leaks on one side, where my incision is. I think the problem is that the wafer has to go over the incisions. Maybe it will be better once it heals. So glad you are doing good........

Nita

JoFowler · Dec 19, 2012

Amy, thinking of you and hope everything went well!

maimmie · Dec 20, 2012

I already hate the puffiness of the gas in the bag even though I know it's a good sign that things are working like they should. I also really wish they would start me on fluids already. I'm very thirsty and I've only been allowed sips of water for pills. I've snuck bit extra just to wet my mouth.
My pain isn't to bad but I haven't done more then stand up by the bed twice for washing. Getting up is very hard. I'm assuming they will take out my cathader and make me get up for the bathroom soon.

Terriernut · Dec 20, 2012

I'm surprised they dont have you up and about, at least sitting up for awhile. And fluids by mouth as well. Give a shout to them and make them give you something!

Since your stoma is already working, they should at least be giving you fluids and soft food. (ice cream for instance!)

maimmie · Dec 20, 2012

Its very early in the morning here right now so I won't get anything now. I think I have to wait to see the doctor so he can change the orders. When I saw him yesterday morning it hadn't started working yet so I'm assuming that's why I haven't gotten anything yet. Hopefull today I'll have something. I think I need to be making more noise. The hospital staff seems pretty busy and so I barelly saw my nurse yesterday. Any one I did see seemed to be busy dealing with one of my more serious roommates. The lady across from me seemed to be progessing into some sort of delusions from her pain meds and they kept having to come ask her if she knew where she was. I've just been grabing nurses as they run by me to get what I need such as a cold cloth for my head cuz its so hot in here or to ask if I can drink yet. So far the answer has been no. I'll fight more today. Squeaky wheel gets the greese, right? The doctors said they wanted me to get up some but there was no one around to help me. Like I said today I'll make noise.

Terriernut · Dec 20, 2012

You definetely need to be a squeeky wheel in there. As for getting up, you are going to need to be showing the best way to GET out of bed. There is a knack to it after abdo surgery....the roll and push with your arms. Do you know how? If not, ask for help. (easier said than done by the sounds of it)

It is gonna hurt, and my thoughts are with you, but push through it hun! The sooner you are up and moving, eating, and changing your bag yourself, the sooner you will get home to be waited on hand and foot like the beautiful princess you are!
:rosette2:

Nitaboo313 · Dec 20, 2012

Amy,

You definitely need to be up and moving. It makes your healing faster. Most doctors and nurse will not move there butts until you make noise. I had to make them take my catheter and epidural out so I could walk the halls. It hurted like hell, but it's the reason I got out so soon. Walking will be your best friend! And if your stoma is working, you should be on liquids by now! Keep pressing your call light until they get things moving, that will work their nerves good enough to call the doctor! :lol2:Lol. No other patient is more important than you.....

Jaano711 · Dec 20, 2012

Hi Amy,
Great to hear strings seem to be working. I'm pretty sure miss piggy started to rock and roll on the day after surgery.
I'm with the others. You need to be the squeaky wheel. The sooner they let you sit out of bed and walk the better you will feel.
Sending you hugs and hoping you are home for Christmas.
Jano

maimmie · Dec 20, 2012

I've got apple juice, jello and coffee! Yay! Dr has warned me to take it slow to make sure I don't get nauseous. And my friend the cathader is out so I'll have to be up and moving soon.

2thFairy · Dec 20, 2012

Hooray!!

maimmie · Dec 20, 2012

Sitting here watching my volcano explode and listen to it make its noises. It's a bit scarey since I haven't had actual food yet just fluids and lots of stuff is coming out. I can't imagine the output amount once I'm actually eating I might do nothing but empty.

2thFairy · Dec 20, 2012

I was so excited when mine first started getting active. I was constantly asking "Did you hear that?"

You probably will empty A LOT for the first month or so, but it will slow down. Your doctor may put you on meds to slow it down if it is too active. Also, you will find out which foods help thicken it up and/or slow it down too.

Will I ever feel normal again

Moderator

Moderator

Moderator

Moderator

Moderator

Moderator

Moderator

Moderator

Moderator

Moderator

Moderator

Moderator

Moderator

Moderator

Moderator

Moderator

Moderator

Moderator

Moderator

Moderator

Moderator

Moderator

Moderator