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I can't stand drinking normal water either so have to mix it with juice as well tastes better. Lol try and get there before the kids do with the cheesecake. I think it's worse than bringing home a new baby coz you have to cope with it mentally and emotionally. I take vitamins everyday too coz I'm thinking coz there removed my large bowel I might not be getting enough vitamins. Barbara has started to be noisy as well :/ hopefully the Imodium has started to work for you. I hope you don't have another explosion there will get less and less I promise xx
 
I feel awful for you reading all your posts Janette. I have my surgery date come through for 19th October for my total colectomy. Not allowed my usual meds of Infliximab before hand and have gone downhill rapidly, whilst trying to revise for my final university exam on 11th October. I'd been trying to see the surgery as my life-line, cos life really has been crappy, and I know without it, well, I dunno what I would do. It's lovely to see you have so much support on here and the people on here are really lovely in general. I've just been reading your woes wide-eyed, hoping you're ok, and hoping that it goes easier for me (sorry!). Plus, don't think my landlady will be too impressed if I get all her beige carpets covered in poo (stupid carpetted house).
 
Hi persehone300
Glad to report that things are improving. I dint think it maters what surgery you have I think the the recovery is always a little harder than you think it will be, if your like me I just want to get out the other side of it all in break neck speed.

Don't worry too much about the poo problems, just focus on the big picture. I am sure my healing issues have been a silve lining as I have not once stressed over my Stoma, it has been the easiest part of the whole recovery.

All the advice I can offer is to be patient and listen to your body. Ask plenty of questions both before and after your op and find a Stoma nurse that you like and trust, as I think there are discussions you are going to have with the nurse that you don't want to feel shy or embarrassed about.

Please let us know how you get on.
Janette
 
Hi Janette, thanks for your wisdom! I'm so glad to hear things are settling for you I felt awful for you.

Only 2 stoma nurses at my hospital - I'll take what I get and hope they're good. It's a big hospital, they should know what they're doing!

I'm really suffering in the lead up without my usual infliximab, so, when it comes it'll be a blessing. Please let us know how you're doing...
 
I know what you mean. I am usually on humira but had to stop it 6 weeks pre op and because of my healing issues I have not been allowed back on it yet. Will be good when I can as it may help settle watery output, although through this site have had some great advice re thickening output. Rice and pasta are good but cheese cake and jelly babies are great. So I now have a tub of jelly babies and a cheese cake that is all mine. My hubby has marked it mums medicine so the kids don't steal it.

Hoping all goes well for you.
Janette
 
Hi
Been off the air for a bit. Just let it all get me down and was doing a poor me. The opened wounds are still 'healing' I have to go to the hospital everyday and have both midline and butt packed and dressed. Am truly over it. Between showing my butt and explaining it all to each different nurse I think I just got a bit down. To add to the misery my 4 year old niece drowned in a boating accident and her funeral is tomorrow. Feeling really sad and depressed as I can't make the trip to be with my family. It is 2500km away and I am not upto the travelling physically or mentally.

I really don't like my stand in surgeon. My GP rang her about the bugs that grew from the swabs and she told her 'look it is going to take a long while for it to heal, probably months and antibiotics will not really help'. WTF GP not impressed by her attitude, she didn't even want to know what it grew, so an waiting until nov to see MY long term surgeon when he returns from holiday.

The good news is the Stoma seems to be good. Thanks for the cheesecake suggestion, and I have discovered creamed rice great for thickening output. Have also discovered miss piggy only seems to get noisy when I have visitors or am in waiting rooms. I have become the annoying cough person, as I cough or clear my throat when I feel a Stoma burp coming on.

Hope you are all well.
Janette
 
Really sorry Janette to hear about your niece, at such a difficult time for you too. I've heard that emotions go up and down for some time after the surgery, and that it's perfectly normal and natural to feel like "poor me" some days. Don't feel bad about that. Take the time you need. It sounds like you had lots of complications too with infections and stuff. I'll keep my fingers crossed for you to have a few brighter days before I follow you in the same path very shortly...
 
Aww really sorry to hear about your niece :( big hugs and thinking of your family and you at this really sad time. Your welcome about the cheesecake suggestion. I don't like rice pudding which weird coz I like rice and milk but not that lol. If it makes you feel any better your not the only one who has down days I do too. There getting less but I had mine done 10 months ago! my heart goes out to you and your family if you need a chat you know where I am xxx
 
I'm so sorry for your loss Janette.
And such a hard time for you to adjust to your new Stoma.
Hang in there.
Gee it takes a long time to recover from the surgery.
Looking back - it took me a full six months. Psychologically I'm still a little fragile - although outwardly - I am very tough about it.
Inwardly - I'm still very weirded out by the whole experience.
I'm so sorry that you're away from your family and struggling. It's ok to have a bit of poor me time.
But it does get better. So hang in there.
 
:kiss: I'm sorry about your neice, what a horrible tragedy.

Yes, recovery physically can take 6 months. Especially if it's open surgery. It definetely took me that long to feel human again. Mentally, I dont know how I would've been without this forum. I am mostly on my own with no family or anything. So mentally, I guess the only way I recovered was to try to help someone else. By doing that you can put things in perspective for one thing, and it stops you thinking about your own issues. But we all have our own individual ways of coping with things.

I think when I got down I remember hearing "Its the bag or the body bag, which one do you chose?" Well...that really put things into perspective. :yfaint: So why get depressed, done is done...always look forwards, never back. Each day is a gift, each moment a 'present'. Life has thrown us one hell of a curve ball, but we aint beat yet!
 
Terriernut you are so right that is the option that I had this or a box I didn't know till the day after tho coz they didn't tell me only told my parents then my dad told me day after. I was in such a state anyway without being told that. It was best option then not to tell me. Tho I don't like it but I'm so glad that I'm still here xx
 
I don't know how I would survive without this forum. I feel you are the only ones who get it well I suppose that's because we are all linked by a common factor, our stomas.

Don't get me wrong, I have a great husband, but truly I feel guilty when having a bad day because he just thinks very matter of factory. His thought process is -(had bum, didn't work, made you really sick, thanks to modern medicine old bum gone, you'll be much better, end of story). I get his thought patterns but really that's how it works on the surface but then there is all the psychological stuff, and the appliance stuff. I think I would be coping much better if I could be guaranteed that miss piggy would not speak, leak or smell, and that no one would ever notice my bag, and that I didn't have to go to the hospital everyday and be reminded about how my body has once again let me down by not healing.

You are all inspirational and every time I find pearls of wisdom and stories of surviving all of it including leaks and messes that you have opted I remind myself that I'm not the only only who has been through this and that there are some very fabulous stomates getting on with life and setting themselves exciting and adventurous goals. I know I will get there. At the moment my first goal is to heal these surgical wounds, second is to be allowed to drive, and third is to give myself a break and see how far I have come rather than dwelling on how far I still have to go. I would really love to be brave enough to try and get back to work, but I am so scarred of colleagues pitying me an treating me differently than they did. Also petrified o standing up in front of a group of students and delivering classes and workshops, not to mention the travelling for work and being away from home with out my cupboard of supplies and safe private bathroom. Too many what ifs at the moment. I break out in a nervous sweat just trying to answer these questions. See I just did it again, not focusing on how far I have come. Need to just breathe and let time sort out my what ifs.

Thanks for the support you are all my inspiration.

Janette
 
Janette...you are breaking into a sweat because you arent recovered yet. I assure you (I REAALYY MEAN THIS) you will start climbing the walls very shortly. And then you will get in that car...and you WILL drive. And you wont have a single issue. And then...you will get in the car again. And you will start going out and seeing people...and nothing will happen. Nothing whatsoever. You wont be bored. You will be...amazed!!! Because you werent ill. You didnt have any issues. No one noticed a blooming thing. You didnt have to run to the loo. Wow! you will think!

And then, you will eventually go back to work...and no one will notice a frappin thing! You will be tired..but all will go well. They will be damn glad to see you again. You will be positive and people will think you are an inspiration, and they will go back to thinking about themselves, and no one will think anything about you being sick. Except to say.."Damn Janette...you look so WELL!" And that is exactly what will happen. In its own time.
:kiss:
 
Right after surgery I was saying there was no way I was leaving the house until after reversal. Weeelllllll, it didn't take long before I was out and about. After about the third time of going to the grocery store, I was no longer paranoid that everybody would notice I had something different about me.

I prefer to wear the bag untucked rather than inside my pants, so I usually wear a bag cover when I leave the house just in case the wind blows my shirt up or whatever. To show you just how comfortable I have gotten with everything, just yesterday I completely forgot to grab the bag cover and I went out clothes shopping. I was about halfway to the mall and realized this. I decided "screw them...let them see everything. I don't care" and went on my merry way. AND, my bags are transparent. If security cameras want to see me in me underwear, then they can look at Bob too! heh heh heh..... :)
 
Also, I ran into a family friend last weekend that I hadn't seen in awhile. She said, "Wow it's great to see you out. I heard about your surgery. Are you still dealing with that?" (My surgery was almost 9 months ago, but I just went along with it) I just said, yep, still dealing with it but I'm doing great... smiled... and not another word about it was mentioned.
 
Quick update.
Saw my surgeon today, bum wound giving me hell. He said it was not great but it could very possibly take another 12 months to heal. At least the collections keep draining!

I want to know why they keep rebuilding. CR says that the amount of active fistulising disease was the reason for these post op problems. He gave it a probe and it has been discharging all day..
Not happy
 
Oh my god oh my god so not looking forward too getting this done reading how long it takes to heal.. Hope it doesn't take that long. How are you doing tho hope your taking it easy still. See my surgeon Monday to tell him my decision. Hope your well and keep us posted xx
 
Janette,

I just read your story from beginning to end, and I just want to say that you are an incredibly strong woman. I know at times you have let it all out, and had a good cry, but there would have to be something wrong with you if you didnt. I admire you for getting back up, every time you have been knocked down, and admire your determination.

I just have one question - if the active fistulizing disease is the reason for your post op problems, do they have you on any meds like 6MP (Purinethol) to help get the fistulas to stop draining and go away? I know Remicade is also good for fistulas, but read that you already tried that and had to stop right? It is such a double edged sword, as you do not want your immune system to weaken from any meds, but on the other hand, you need them to resolve the issue. If we could get the drainage to stop with the help of some meds, you could perhaps have the fistula/anal plug procedure. What meds do they have you on now?

Also, for the watery output - are you taking any Psyllium - over in the States we have a product called Metamucil? It absorbs liquid in the intestines, swells, and forms a bulky stool, which is much thicker and easier to manage with a stoma.

Please keep us updated and let us know how you are doing - or, if there is anything we can do to help you.
 
Feeling so sad today. Feel like I would be better off out of the way. I don't think my family should have to put up with another 12 months of me being a burden physically and financially. Just want to go to bed and never get up. I hate feeling this depressed its not me. Just wish I could stop the tears. I think this is the cry I've needed. I just hope I can stop. Sorry just feel sad. Have lost all perspective at the moment
 
Oh Janette I remember those bleak awful days.
You've come so far already.
Cry your guts out - you'll feel better.
Get through today, and try again tomorrow.
It will eventually get better.
Just keep at it.
Big hugs for you.
 
Oh honey!!!! Let it rip, get it off your chest, and tomorrow is another day.

You are going through alot. An awful lot. And you will NOT be like this another 12 months.

Do you remember when I told you patience was the hardest part of the recovery? That giving yourself a break would be the worst part? You are now in that zone, but you are not looking forward enough. You will get out of this, and if you need help, seek some. Many, many, many of us have to get some help to get through. What we go through takes so much out of us.

The recovery is long and difficult and it's very hard to see that there is a light at the end of the tunnel. It seems one step forward, two back. But you WILL fully recover. And you are NOT a burden!!!!!!!!!!
:ghug:
 
Aww chin up it does get better sometimes I still feel like that and I've had it nearly a yr coming up this month :/ big hugs coming your way. Tell somebody how you are feeling they'll be able to help you. Hope you feel better soon thinking of you xx
 
Jaano711 said:
I think this is the cry I've needed.
Click to expand...
That is SO POWERFUL! What an incredibly powerful feeling. The healing power of letting go with a good cry is truly amazing. I'm actually excited for you. Chances are you've turned a corner. And either way, we're here for you through thick and thin. It WILL get better.

And by all means, connect with a counselor of some sort if you haven't. You're going through so much and a professional who can help you find your way through is worth their weight in gold.
 
The crying day was what I needed. I think it's also called acceptance. I feel better and able to get back on with the task at hand. Spent all day Sunday watching movies with kids and hubbie and had some really good belly laughs, they felt great. Can't remember laughing much lately, not those real uncontrollable chuckles, and not the forced well timed half laugh.

Thanks again. I always appreciate all your kind words and advice. It nice to know that their are others on the same journey.

Janette
 

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