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11-28-2012, 01:17 PM   #1
maimmie
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Will I ever feel normal again

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.
11-28-2012, 01:29 PM   #2
Terriernut
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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.
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DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
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11-28-2012, 01:36 PM   #3
maimmie
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Thank you Misty!
You are always one of the ones there with encouraging words.
11-28-2012, 02:21 PM   #4
Hobbes650
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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!
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Ulcerative Colitis 1986
Complete Proctocolectomy with j-pouch 1987
Permanent Ileostomy 1991
Crohn's Disease (just inside stoma) 2012
No meds post 1987 surgery to 2012

Current Meds:
Pentasa 3000mg daily
Imuran (Azathioprine) 100mg daily
Folic Acid supplement: 1mg daily
Mulit Vitamin/Fish Oil or Flaxseed Oil daily
Tumeric and Boswelia occasionally.
11-28-2012, 02:59 PM   #5
2thFairy
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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.
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11-28-2012, 03:15 PM   #6
Nyx
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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.
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Crohn's Diagnosis: May 2006
Current meds: none
Surgeries: Colostomy, December 2009

"Never trust a fart." Jack Nicholson, The Bucket List

Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

11-28-2012, 03:33 PM   #7
maimmie
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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?
11-28-2012, 03:37 PM   #8
2thFairy
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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!!!
11-28-2012, 03:40 PM   #9
2thFairy
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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.
11-28-2012, 03:52 PM   #10
Hobbes650
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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.
11-28-2012, 03:57 PM   #11
Nyx
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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.
11-28-2012, 03:58 PM   #12
Terriernut
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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!!!!
11-28-2012, 04:21 PM   #13
maimmie
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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.
11-28-2012, 04:26 PM   #14
Nyx
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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.
11-28-2012, 04:26 PM   #15
Terriernut
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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!
11-28-2012, 04:33 PM   #16
Hobbes650
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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).
11-28-2012, 04:43 PM   #17
Hobbes650
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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.


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.
11-28-2012, 07:39 PM   #18
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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. Dana
11-28-2012, 07:43 PM   #19
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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
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11-28-2012, 07:48 PM   #20
2thFairy
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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!
11-28-2012, 08:32 PM   #21
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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.
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11-28-2012, 09:08 PM   #22
maimmie
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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.
11-29-2012, 02:51 AM   #23
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Hi maimme.

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.
11-29-2012, 02:49 PM   #24
maimmie
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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.
11-29-2012, 03:20 PM   #25
Terriernut
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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.
11-29-2012, 03:23 PM   #26
Hobbes650
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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!
11-29-2012, 06:21 PM   #27
Jaano711
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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
11-30-2012, 02:55 PM   #28
maimmie
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ok its officially booked for Dec. 18th and now I'm so nervous I could throw up.
11-30-2012, 03:06 PM   #29
Terriernut
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I can't fix your nervousness, but I can say we're here.
11-30-2012, 03:45 PM   #30
maimmie
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So what should I be doing over the next 18 days to prepare myself?
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