New to Forum & new to stoma

Crohn's Disease Forum

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Foxy91

Foxy91

Joined
Apr 17, 2012
Messages
10
Hi i have just joined the forum and have spent the whole evening reading all your messages, discussions, advice etc - what a fantastic support network for such brave, determined and very strong individuals, some of the comments are so funny too :ylol2:
I have also just joined the Stoma club :yfrown:
I have lived with crohns for the past 17 years, tried every medication around, had flare-ups, hospitalisations and been lucky enough to have a few remissions.
18 months ago a colonoscopy showed a stricture in colon so I started on Infliximab Infusions, seemed to be doing the trick started to feel energised, put on weight, skin condition (psoriasis) cleared up too things were going really well - or so we thought!
February 2012, school half term, felt very tired thought i may need some iron or a break from the kids!! one afternoon I just couldn't keep my eyes open so went for a nap, woke an hour later in AGONY.
Long story short..... my bowel had perforated had been leaking for up to a week (with no symptoms) b4 exploding!! By time I got into A&E my veins were shutting down along with the rest of me.
After being pumped full of Morphine (when they were eventually able to get into my veins) I then spent 7 hours in emergency surgery having a left hemi-collectomy and a defunctioning loop-iliostomy.
I can't really remember most of the first week, have since been in denial, have grieved, been very angry and depressed, have been back into hospital for another week due to infection caused by leaking bowel join. Have wanted to go to sleep and not wake and then felt terribly guilty for wanting to give up.

Now in week 9 of recovery and actually feel I am turning a corner, pain under control, not sleeping during the day, getting used to the stoma and gaining strength and stamina.

Think the only way is up now especially since finding this amazing forum, I'm really looking forward to talking to some of you :ysmile:
 
Oh wow, what a stressful story! It would be really hard to have to get a stoma under those emergency conditions as you don't have any time to prepare for it mentally. I don't have a stoma myself, but there are so many great people on this forum with them, so I'm sure you'll be able to get some good advice and support. Nothing is ever too embarrassing or 'gross' to bring up here, so feel free to ask all the questions you want, people are happy to help.
Glad to hear though that your outlook has starting to get better. Stay strong! Also, Welcome to the Forum!! :)
 
:welcome: Foxy91 !!!

You sure have been through it! What a shock this must have been for you! But you seem a tough individual, and I'm glad you decided to fight on. A few of us on here had the emergency proceedures as well. Mine wasnt a complete shock, because even though I was half dead I was still giving them hell about it. But sometimes, needs must, so I welcomed Stan into the world on 22nd Dec 2010.

I'm glad you've read through the posts, they are hilarious, sad, and enlightening arent they? After all those of us with stomas are 'super humans'. (IMO)

We are so glad you've joined us, and we hope we can help you with your recovery and adjustment!
:hug:
 
Welcome and so very sorry for your situation. As time goes on it becomes easier and soon you will even forget what it was like before stoma( at least I did ). I hope here on out it's smooth sailing for you. :)
 
Welcome Foxy and welcome to your new Stoma.
This forum is fantastic for support and sharing.
I'm really glad you courageously shared your feelings about wanting to go to sleep and not wake up. I know I've had some terribly dark days since my Stoma arrived. The folks here have helped me through it and without them I would have been lost.
I hope you find the forum as helpful as I have found it.
Also hope you're recovering well.
 
Hi Foxy! Emergency surgery and repeat to boot? EEK!! Hopefully you will discover that your new stoma can be a source of humor and wonder. Not many people get to experience this constant companion who in many cases has saved our lives.

Mine was not an emergency and I had many months to plan, change my mind, freak out, and finally went through with it as I saw no other alternative. Like many, I thought having a bag was the end of normalcy, temporary or permanent. What I have found instead is a whole new healthy life and a whole new source of humor.

My husband took one look at my new stoma and said it looked like a clown nose--a clown trying to escape from my gut. The next several days were spent with him making clown honking noises. Sideshow Bob has served me well and I will be very sad when he is gone.

This is the beginning. SOOO much good advice and cheering up around here. Glad you found the forum!!
 
Thanxs for the replys, it felt really good to have a bit of a rant and to know that people reading would totally understand where I am coming from :)
After reading some more Stoma posts I think I may have to think of a name for my new addition!! might get my family involved - could be amusing.
One question to throw out there ..... does anyone else have issues with mushrooms?
 
Mushrooms!!! AAAAAAAAHHHHHHHHHHHHH!!!!!
Runs screaming from the room!!!!!!!!!!!!!

That would be a YES!
 
I was told they are at the top of the FOODS TO AVOID list and therefore I have not been brave enough to even try them...... I so badly miss my lovely lovely mushrooms.
 
I found out the hard way last night after I had my first stoma blockage, managed to clear it by having a warm bath, lots of fluid and massage eventually resulting in fully formed undigested mushrooms appearing :puke_r:
Really gross
So thinking I may AVOID mushrooms now!! any other foods I should be careful with?
 
Whole corn, celery, coleslaw, tomatoes (because of the skin), shrimp, coconut, and most nuts is good to avoid, at least at the beginning with an ileostomy.
 
Beans too, I forgot beans. But I eat refried beans now. *only when I'm feeling particularly naughty, or revengeful of course.
 
I forgot to add, because a certain puppy just hit my send button, ahem, that mostly a low residue diet to begin with is a good idea. It wont stay that way forever, we promise!!!

I eat corn, and enjoy watching it come out whole. (now) I eat small amounts of coconut, I eat tomatoes. I still dont eat nuts or popcorn. Then again, crohns made me quit those things anyway.
 
I love mushrooms, nuts, popcorn & broccoli - but will avoid / be carefull now - no issues with avoiding beans!
thank you so much for advice, was probably told all this few weeks ago but didnt really take much info in and had no appetite, which is now returning with a vengeance - seem to be constantly hungry
 
The constant hunger should slow down as your body gets used to the ileostomy and your gut slows down and starts to absorb more water.
 
Speaking of water....you need to drink ALOT more fluids than you did before.

Drinks like powerade help as well. Alot of hunger pains can be dehydration as well, strangely enough. But stick to the low res diet for about another month just in case. And then start adding foods that are bit harder to digest a bit at a time.

But it sounds like good news the appetite is back! Yay!!
 
Just coming to this thread now...my fiance was fooling around with my computer last night and broke it....grrrr

Anyway, welcome to the forum and our little club! I had emergency surgery as well after my guts burst too! I now have a permanent colostomy named Oscar. He's been a lifesaver to say the least. You'll get so used to your new stoma that you won't even notice it's there after a while.

As for foods to avoid, since I have a colostomy most of mine get digested pretty well..the only thing I have problems with coming out whole are green onions and some nuts. But I eat them anyway...lol I love my food and don't want to give any of it up...lol

Wishing you continued good health and an uneventful recovery :)
 
Hi foxy and welcome to the forum. So sorry to hear what happened to you but glad you are on the mend now :), You're certainly in the right place!
 
Hi foxy and a big welcome.

I, stupidly, ate some sweetcorn today. So paying for it now. But not in the way i thought i would be though.(I will start another thread in a bit)

Have you got a name for your stoma yet? Mine is called Ozzie ostomy.
Its a fab place to come and hang out. You can find all sorts of info on here.

Look forward to seeing around the forum. Where about in uk are you?
 
Hello everyone,
I find all the fruits i used to love and still do a problem. Oranges,strawbs, grapes and espcially apples.
As i say "you count em in and you count em out". :)
 
It is a crying shame. I dont like seeing my food twice. I miss strawberries especially with the season coming up. I really, really miss popcorn. I cant go to the theatre anymore. I'd KILL someone for their popcorn...and off to the emergency room I would go.

Oh well. At least I'm alive!
 
I swear the sweetcorn I ate put itself back together again before popping out!

Its not right.
I would also kill someone for their popcorn. Not to mention a few other foods as well!
 
Hi Shazz, Im near Hastings on south coast.
No I havent come up with a name for my stoma yet, I've been told it helps to give it a name but to be totally honest I hate it so much it feels that if i give it a name I'm giving it the chance to stay and I am really hoping for a reversal asap. I know i should be thankful that it has saved my life but I cant seem to get my head round it yet.
In fact I am really struggling emotionally with it.:cry::depressed:
 
Foxy, I hate that you are struggling with the whole stoma thing. I find mine fascinating and have found all sorts of things that it does very entertaining. Naturally, there are things that I don't like about it--it is an inconvenience at times--but overall I have come to like mine.

It's an extremely sensitive issues and I am not trying to tell you otherwise. I just truly hope things will turn around for you and it will not be the burden that it is for you now.
 
Im not far from you in Portsmouth.
Its such a cliche i know but time is a healer. You WILL get your head around it. I felt ashamed when i had to tell my missus what they were planning to do. 3 years down the line im used to it. On Tuesday my consultant mentioned reversing it and i more or less shot him down there and then and said thanks but no thanks.
Im 37, married with 2 beautiful girls. I still go swimming with them, i still have a drink and i average about 100 miles a week on my bike.
It is hard at first, but stick at it untill you get a reversal date.
Have a look at a company called comfeez. They do some good clothes to avoid the bag showing.
Take care Foxy (as i dont know your real name) :)
Chris x
 
Oh hun. I understand where you are coming from.

I am one of those annoyingly optimistic people and I find I don't tend to worry very much about much really. I try to find one thing that is my silver lining each day. Doesn't have to be big or even to do with my stoma, colitis or health in general.

I am on anti depressants which have also helped massive amounts as well but they are not for everyone.
I hope you get your reversal soonest hun, I really do.
Have a good cry and don't feel embarrassed to really vent your feelings on here. Most of us have been through what you are and the rest of us are going through it as well.

Sorry if what i have written sounds a bit preachy and stupid, I don't mean to be.

Xxxxxxxxxx
 
I too am 37 Chris (my real name is Lucy) You're not far from me at all in fact I have family in Fareham, Portsmouth & Bournemouth.
I am actually surprised that I am struggling so much with this, as worked as a theatre nurse for 5 years (mainly general surgery) seen so many Crohns opps and stomas, and caring for the stoma is no issue practically for me.
Think it all happened so suddenly, still poss in shock, desperate to get back to normality (going back to work 3 hours per day from next week), probably doesn't help that hubby had an affair & left me and the 2 kids in Sept last year, got back together Nov/Dec, he moved back into family home in Feb and then 2 weeks later I was fighting for my life and woke up with this stoma.
Feel so angry at whole situation.
Can't believe I have just told you all my life story.... but does feel better to get off my chest x thank you xx
 
Hey Lucy.
I have really struggled psychologically with my Stoma too. It has been very emotionally challenging. I'm getting there with it - but really empathize with you.
I am a naturally happy and optimistic person - but the Stoma has really knocked me for six. I hope you're getting there with it. It's a hard road.
Xx
 
Hi foxy I know where you are coming from I've had my stoma a few months and I really can't get used to it , I would love some sort of normality and to get back working but I can't see it happening, I feel grand in general apart from depression and my very active stoma. Ps sorry for moaning Ryan.
 
Oh Lucy, no wonder you are feeling like you do. You have been through one trauma after another in the last several months, physically, emotionally, and spiritually. What you have dealt with is tough for the toughest of souls.

May I suggest you do get some help with some meds to help you to get through this. I would think on a stress level, and for emotional trauma, you have been through a 10 out of 10. And a councillor to work through some of this. I dont know how you are doing as well as you are! You must have a steel backbone!

Even without all the other stuff you've been through, the emergency stoma can be a complete shock. Never mind the physical issues that got you to that point to begin with. The only thing that made me embrace 'Stan' was thinking 'differently' about it. And I had to pull myself up by my bootstraps I can tell you. I did a list of all the things I just couldnt do before Stan. I dont know how bad of shape you were in before the emergency op, but I was in really bad shape. Never off the loo. I literally couldnt go to the grocery store. Or even to the local shops. I managed to go to work, but barely, and the toilet was my bestest friend. I wont talk about the pain of a fistula through the fallopian tube, or the sigmoid perforation.

Once you feel human again, and you will!!!!! Then you can start thinking about all the things that you CAN do now. Since it's temporary for you, the best thing to do is not count the days til reversal, but to think of it as a time for you to go and do things you maybe couldnt do before. This is difficult when you are trying to recover from surgery, I do understand. I literally had to take one hour at a time while I was healing. Every day I made little goals. And with each day I grew stronger. You can do the same. It's changing our perspective a wee bit at a time that can make all the difference. We may not be able to change the situation we are in. But we can change our thoughts about the situation we are in.

I think you are so much stronger that you think you are. I also think once you physically feel alot better, you will have a 'turning point'. You may never like your stoma, and that's ok, but you may get to a point where you learn to manage it well enough emotionally to be ok with it for the time being. And thats all you will need to get through the next several months while you heal up.
Major squishy huggggggggggsssssssssssssss xxxxxxxxxxxxxxxxxxxxxx
 
Hi Foxy/Lucy, I haven't got crohn's, so I shouldn't really be here - but I have bowel cancer and a stoma that I too am struggling to come to terms with and have been reading sites about people going through the same. You caught my eye because I live in Hastings too. I'd love to meet or talk someone locally who understands the whole stoma thing. Hope to hear from you. love x
 
I really hate my stoma worse than anything. I have nothing good to say about it other than it was better to have it than dying.

The SOB is sore much of the time. I hate draining it twenty times a day or so. The lousy Hollister bags I am using apparently have no quality controls wherever they are made. Over 15% of then will spring a pinhole leak before I have to change them. I would try other brands, but I am getting the works reversed in a little over a week, so I will be done with them, hopefully for good.

I am sure that my attitude would change over time, if it was going to be a permanent fixture in my life, but I am quite content hating it for the time being.

Sorry this was not exactly supportive in any way, but I certainly know how weird it is getting a stoma, and how hard it is to deal with mentally. It is largely a problem for me, and no one else. Others do not care about it, or are grossed out by it that I can tell. It is in my head, but I hate the thing all the same.

I think like anything else you adapt to it. There really are not a lot of other options. I just have not tried much since it is not permanent.

I hope it becomes a non issue for you with time. It really is not a big deal for others.

Good Luck

Dan
 
Hi Lucy
No wonder you are in such bad shape. Sometimes it would be nice if the clouds could clear a little and let it stop raining on our lives. There is no wonder you are feeling how you are. If all the personal stuff isn't enough your health has to let go ang let you down when you most need your strength.

I am still in hospital 7 days post op of a permanent ostomy ( because of my many different sections of bowel being removed in the past), theoretically a colostomy but works more at iliostomy level and at this stage is like a volcano that erupts as soon food or drink is even mentioned. God lord it stinks think I may have to put in an outside toilet at home so as not to stink the house out. Yep I hate it. It hurts, it stings it's ugly and I fear I may never leave the house again in case someone notices it ( in a really bad spot above belt line) it explodes as it has already done or I have to change it. BUT with all that as a con the pro is that it has saved my life and I am hoping that is I get stronger maybe I can accept it more. I do hope that it will give me freedom to do things I haven't been able to do for years and to leader a fuller life doing whacky stuff with kids (3 of them) and husband ( who may never have sex again as I don't think I can feel sexy with a stoma, and would die if it erupted during sex).

Hey Lucy, let yourself feel all those feelings and don't make yourself have to hurry through them. They are all very real and valid to you. My GP is a really good friend of mine, and I am usually a really happy glass half full kind of person. I saw her just after I was told I needed the op, couldn't stop crying, I rang her and said what would she do if she was me, she arrived 1/2 hour later with a sample box of an anti- depressant and a script for repeats. I would have laughed at the thought weeks earlier, but it has helped greatly with the process and has also helped me not scare the crap out of family. I feel calmer and a lot less teary. I m not numbed out of my brain, but I do feel that it helps me cope with all the things going on around me.

Don't be too hard on yourself, life is difficult enough with out beating yourself up. thinking of you at this difficult time and hoping it gets easier

Seeding much love and hugs
Janette
 
Heads up - that stink dissipates after some time.
Mine was like an animal died.
I think something happened when I had my operation as well - making my sense of smell more accute. Even now - I'm like a bloodhound.
But the stink - meh - its better than my previous stench!
It took a few months to settle though.
 

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