Crohn's Disease Forum » Surgery » Stoma Subforum » Update on Jerís Girl

08-17-2010, 08:49 AM   #1
Jer's Girl
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Location: Albuqerque, New Mexico
Update on Jerís Girl

Just kind of wanted to give an update on how I am doing these days and see how all of you were.

So after my disappointment and melt down last week, I spoke to my husband, and as usual he helped me put things into perspective.

From his point of view, I am crazy to have any negative thoughts about my stoma. It has allowed me to live in a way that I havenít been able to since I was 13 years old as I am completely Crohns free for the first time in my adult life. Not only that, it has allowed me to live period as what I was doing leading up to the surgery wasnít really living at all. He doesnít see me as any different than before, except for the fact that I am happier and healthier. I am trying to learn how to see myself the way he does, although from time to time I admit I struggle with my body image because of the bag.

Now that I have found a method that has helped me keep leaks at bay (finally!), I really am quite happy with my stoma again and able to be grateful (most of the time).

I have been struggling with my weight a bit. I had eating disorders for seven years and although I had been out of the woods for several years now, putting on all of the weight that I did after the surgery kind of triggered those negative thoughts again.

I joined an online site called Calorie Counter which helps you track what you eat for the day. It tracks you calories but it also tells you if you are getting enough nutrients or not, so in a way it teaches you to eat more healthfully. It hasnít helped me lose any weight, but what I am mostly concerned about (or trying to be concerned about) is learning to be healthy and simply not gaining any more weight. I am at a pretty good right where I am, but the weight came on so quickly that it kind of freaked me out. I am still getting used to living in a healthy body again. Anyway, I know that I am not the only crohnie who struggles with gaining and losing weight this I thought I would tell you all about the resource. I used it once before when I was trying to gain weight so it can be helpful either way.

So how are all of you? Many of us are a few months in now. Is life starting to feel normal again for you guys? Having any ups and downs? How are your Crohns symptoms doing? Just wanted to check in. I think it is helpful to all of us to see how others live with this.

I think that all of us will have ups and downs and mixed emotions about this lifestyle (with the stoma and with Crohns), and that is okay. My method is to allow myself to have a day to feel sorry for myself from time to time but I give myself a time frame. I say to myself, ďyou get to be sad today, but that is it. Tomorrow you start working on being grateful again.Ē I truly believe that if you work at being happy instead of focusing on the negative, eventually you will be happy. It seems to work for me.
08-17-2010, 09:00 AM   #2
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Join Date: Jan 2010
Location: St Helens, Merseyside, United Kingdom

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Hiya Nicole

good to see you! glad you're on the mend and feeling positive, it's a hard word, a crappy word, innit?
but things can only get better for you now, the only way is up!
I'm doing well, read some of my funny stories on here, that'll cheer you up!
stay well and take care
lotsa luv
Joan xxx


Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery!/profile.p...4208290&ref=ts

No-one should make you feel inferior without your consent!

08-17-2010, 09:41 AM   #3
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Join Date: Mar 2010
Hi: I can't imagine the challenges of learning to adapt to life with a stoma, and it sounds like you are doing very, very well and problem solving through the tough times. I admire your sense perspective and how you tell yourself that it's fine to struggle but then you're going to work at seeing the positive again.

Thanks for the Calorie Counter resource, too; am going to check it out right away.
Dx: Moderate Crohn's in 3 locations
Doctor's orders: 200 mg Imuran
Have used: 4500 mg Pentasa, 4500 mg Salofalk, Flagyl, Cipro, 50 mg Prednisone, 9 mg Entocort.
Turned my Crohn's life around: ginger for nausea.
Claim to fame: "loopy and floppy" colon
08-18-2010, 09:56 AM   #4
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Join Date: Mar 2010
Location: New Jersey
Hi Nicole,
It sounds like things are going pretty well for you now. It's a tough thing to adjust to so allow yourself to have these ups and downs.

I have been adjusting well. I think having constant leaks is the big factor in life being good or bad with an ostomy. I have been generally leak free so things are good. I was just thinking this morning about the years and years of "bathroom" problems I had before. And how now I can go anywhere and not worry about urgency and the nearest bathroom.
So right now, I'm feeling pretty good about it.
Crohns since 1989
3 Surgeries - Hemicolectomy '08, Sm Bowel Resection '09, Proctocolectomy '10. Lets hope I'm done now!
On Protonix and Humira.
08-18-2010, 04:47 PM   #5
Jeff D.
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Join Date: Apr 2006
I'm sorry you have had so many ups and down. I hope that everything is on the up and up from here on out. I understand how depressing it is to get leaks, hopefully that's completely under control now. I'm praying for you.
08-18-2010, 05:02 PM   #6
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Location: USA

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Hi Nicole - I'm sooo glad you have such a supportive husband. Mine is, too, and he really works hard at making me feel better about myself. I've never had surgery and don't have a stoma, but my Crohn's does mess with my body image. So even though your husband treats you normally and is so glad you're health is so much improved, I think your plan of allowing yourself to feel sad in a time frame is good.

It's like grieving, I think. Your husband sees how good you're doing and it's so great that he tells you, but you have to adjust to all the changes in your body. One of my big struggles right now is fatigue, so I get really down about myself for not doing anything. My husband's always quick to point out the things I do accomplish, and that does help with perspective, but I'm the one who has to live knowing I could do so much more if I wasn't so fatigued.

So I need "grieving" periods, too. Like you said, happiness takes work...

... Except when you read Joan's stories - then it's instantaneous
IBD diagnosed 1990 @ 8yrs old (current dx: Crohnís); Blood clots 12/2009 (DVT, bilateral PE)
6MP: 50mg/day

Ethel: ďSo, is everything okey-dokey?Ē Lucy: ďNo, itís inky-stinkyĒ ~ I Love Lucy

-Are you looking for a new treatment option for your Crohn's disease? If so, I suggest you look into the ongoing clinical trial by Qu Biologics for their SSI treatment. Click here for more information or to help spread the word.
08-18-2010, 07:09 PM   #7
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Join Date: Jan 2010
Hi Nicole - I am so glad you are better and finally figured how to stop the leaks. I am still trying to figure this one out. I am trying Convatec and so far so good.
I am 5 weeks post op and so very happy with the decision to have the surgery. like you, finally no crohn's pain, no bathroom runs, no horrible meds side effect. so life is good, and I am smiling again.
-Best wishes - Dan

1. Diagnosed with Crohn's UC 1995
2. Flagyl/Cipro Imuran in 80%remission 1997 2005
3. Used 5mp, asacol, 6mp, remicade, imuran, Cimzia, entocourt, Flagyl/Cipro and enemas/suppositories until 2010 with periodic relief.
4. July 9th 2010 total ProctoCollectomy surgery! Free at Last!
08-19-2010, 10:43 AM   #8
Jer's Girl
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Location: Albuqerque, New Mexico
Thanks everyone for your responses! It is nice to catch up.

Crohn's Disease Forum » Surgery » Stoma Subforum » Update on Jerís Girl
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