Could be due stoma soon

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hainman

hainman

Joined
Apr 13, 2010
Messages
379
hi guys and gals.....im just looking for some input into how everyone accepted they were getting a stoma.ive had crohns about 5-6 years now and been through the mill mentaly and physically,
had an op for re-sectoin a few years back and they disease reared its ugly head again 3months after i had 2 sections removed so i was put on asacol,then pred and ive tried aza,methatrexate,imflixamab and humira.now on mercaptonpurine and managed to get of the preds eventually,recently the blood tests have been showing signs of problems and the docs took me off the merc then back on then back on again,as off a few weeks ago i have had the big D back with avengance,
so im due in tomorrow to see the specialist in glasgow and ive a funny feeling he is going to push for the op and full removal of bowel for stoma.part of me is ready to go this route as i will get a better quality of life but the other part wants to try anything to stave off the op till i have no where else to go.sounds stupid but in the back of my mind im thinking "i'll get the beg and next week they will find cure for it"
anyhoo enough of my moaning just looking to hear how everyone has dealt initially with the bag op and what to expect???im a keen mountain biker and im hoping i will be able to keep it going along with swimming with my kids.can you get sports guards to protect the stoma's in sports.

many thanks for reading and taking time to help me put my mind at ease
craig
 
I completely freaked out when my doctor first suggested total colectomy with stoma. I didn't even tell my husband about the GI appointment. Once we did start talking about it, both of us concluded that I really didn't have a good alternative. The months leading up to surgery, we both did a ton of research and got a bit more comfortable with the idea. We both had lots of jokes between us about the whole thing and it made me much less afraid of his acceptance. He was involved before surgery and involved while in the hospital, even doing a bag change for me when I was having a really bad day and just didn't think I could handle anything else. Having him be part of it right from the start, I think, has made the biggest difference for me as to how I view myself with it.

Going into surgery, there was a chance of a permanent stoma, but my surgeon was a wiz and was able to do J-pouch surgery afterall and I ended up with a temp. stoma. I absolutely LOVE my life now. I really rather enjoy having the bag---no more pain, regular diet, no more panic runs to the restroom. In my house, it has become a member of the family. Instead of blaming everything on the dog, Bob gets the blame... ha!

I was given the okay for reversal surgery about 3 months ago, but I'm waiting. I will have reversal before the end of the year, but right now I quite like having a stoma. Not everyone feels this way, however, which is completely understandable.

There is a lot to consider. Believe me... I did not want this. Now that it has happened, it is so nice.
 
In the long term you can do everything you could before you get a bag, plus even more as you get so much more freedom with a bag.

I chose to have the operation to remove my colon and sew me up and I wish I'd done it sooner. Also glad I didnt chose to have resections as it was just one op and the whole lot was gone. I don't worry about getting ill now and don't worry about needing to go to the toilet or anything. I even forget I have it most of the time.

Are you having your rectum removed too? Id so, it may be a little longer until you get back on a bike as the tail end takes a little while to heal, but you'll get there in the end.

I think the biggest challenge of getting a stoma/bag is the mental aspect.If you don't accept it, you'll more than likely hate having one. The quicker you enbrce the whole thing, the easier it'll be. I fully embraced getting mine and so once I finally had the operation, it was easy to deal with mentally. A lot easier than I was expecting. The op is a big one though. Expect a good few weeks for recovery! Good luck :)
 
Craig, sorry to hear you've been so poorly. I wasnt given much oportunity to think about getting a stoma, mine was an emergency. But, I embraced it because it was 'the bag' or the body bag. So, my life with Stan began.

You should actually be able to do everything you want and MORE with a stoma. Yours may be temporary, so wait and see what they have to say. But, dont fear it, just think of it as probably the only really effective treatment they have right now for what ails you. You cant go on being sick all the time. We do know what that is like, and it's not living! A stoma can give you your life back in many ways. Not that there arent trials and tribulations..oi veh, there sure can be!

But, have a read through the threads here, and get some advice if you can from real people who have them. The CCFA and the stoma nurses can help you with that. Yes...there are sports guards for stomas. Yes, you can go swimming! Yes...you can do anything even sky dive. And yes...you can cycle, run marathons, and heres a thought...sleep all night.
:ycool:
 
Hi Hainman :) I got my illeostomy when i was 27, 2 years ago. I Wanted it for so so long just because pooping was so torturous but was always so scared of it. I wish I would have done it long ago lol. I said goodbye to so many things like bike riding, rock climbing, sports....anything that i couldn't stop in the middle and say be right back before my ostomy lol I am so excited to go skiing this winter because I had to say goodbye to that too since crohns. In my ostomy group we have found that the ones who regret their ostomy, are the ones that didnt suffer before it; like sudden colon cancer or an accident being the ostomy reason. I absolutely love my ostomy and forget all the time its even there. Its a little intimidating at first but gets super easy as you get used to it. I wear my bag for like 3 to 5 days at a time and very very rarely get leaks.
The bag should be your LAST option though because i have many complications due to my ostomy. All of my intestines have balled up stuck together under my stoma which makes play time for blockages in a flare :) But i manage my crohns with diet now so dont have to worry about that much anymore unless i eat something bad. Good luck to you. If you do have to have the surgery dont be afraid of it because never having to poop again rocks! lol But make sure and try everything first, including drastic diet change ;)
 
Hi Craig:

I'm part of the "living with and loving my stoma" group. I just got back from a 10K hike with my dog, something I wouldn't have contemplated before the bag. I have a freedom and sense of vitality that I didn't have before the stoma came along. I'm also someone who would say "I wish I'd done this sooner."

Having sung the praises of stomaworld, I would also say what others have said before me: you really have to get yourself mentally prepped for it. And even with the mental prep, it doesn't guarantee that the first two to three months aren't going to be a physical and emotional challenge.

I know there's folks on the forum who have a stoma and participate in marathons, go swimming all the time, etc. I've not done mountainbiking, but I'm back riding my motorcycle again. I had really missed it.

All the monologues you have with yourself around why you shouldn't get a stoma are perfectly reasonable! I had all kinds of fears and anxieties...I hate commitments at the best of times, and committing to something so permanent did scare the bejeezus out of me. For a first-time commitment on my part, the stoma and I are enjoying a very happy life together :)!

I wish you the very best as you try to make the best possible decision for yourself.

Kismet
 
hi guys,thanks for all your kind words,seen the nurse and she spoke to the GI today,general feeling is,op is only real option as i've been on all the meds that are available,so got to get my head around it and me and my wife will meet the stoma nurse to make us aware of what will be going on,physically and mentally,
in the mean time i have to do a 2 week course on questran or however its spelled to see if its the bile acid thats causing the big D.fingers crossed i get a definate answer one way as i have a summer holiday in 3 weeks and dont want to be walking about spain on a toilet hunt.....
anyhoo thats the jist of it for now,thanks for listening
craig
 
[Misty-Eyed]In the long term you can do everything you could before you get a bag, plus even more as you get so much more freedom with a bag.

I chose to have the operation to remove my colon and sew me up and I wish I'd done it sooner. Also glad I didnt chose to have resections as it was just one op and the whole lot was gone. I don't worry about getting ill now and don't worry about needing to go to the toilet or anything. I even forget I have it most of the time.

Are you having your rectum removed too? Id so, it may be a little longer until you get back on a bike as the tail end takes a little while to heal, but you'll get there in the end.

I think the biggest challenge of getting a stoma/bag is the mental aspect.If you don't accept it, you'll more than likely hate having one. The quicker you enbrce the whole thing, the easier it'll be. I fully embraced getting mine and so once I finally had the operation, it was easy to deal with mentally. A lot easier than I was expecting. The op is a big one though. Expect a good few weeks for recovery! Good luck :)
Click to expand...

Good post :)

I do think that in my situation, and I think you're the same, the fact that I had to have mine subsequently done permanently, meant that I had no choice but to embrace/accept it and get on with life. If you have that opportunity to have a reversal (I had two) then it can be a lot harder to accept having one.

We're all different and the way we cope with such situations will depend upon the type of individual we are. I had mine done as an emergency, so I wasn't prepared or aware of the implications of having a stoma. One thing that I would encourage anyone facing the prospect of having one to do, is never feel afraid to ask for help and advice. Many NHS trusts have support groups for those with stomas and the specialist nurses are a fantastic resource. Once you have the stoma and get into a routine, then it will get easier. All the best : )
 
If you haven't tired diet, do it. Going wheat and diary free saved me 6 years ago from having a stoma, due to a abcess.

I now have a temp stoma because of a anal fisturla's and abcess , and tbh its not pain free, the skin is always sore around it, it stings alot, very badly. And it has prolapse and continues to grow. But not everyone has this problem just be aware as its not something the surgeon will make you aware of.

The stoma did initially relieve me of my abcess pain, but now i feel my life was better before my stoma with the abcess pain.

If i bend over my stoma gets in the way (putting my shoes on), i knock it, it hurts you can wear guards but they stick out a bit. It pulls if i do any sporting activity. I will be asking to have it reversed very soon.
 
jezer, were you symptom and med free in that 6 years of Wheat and Dairy free? Would LOVE to put at least some type of sugar in my diet but a little scared after my chocolate cake slip up to try anything else lol! I just need my sugary coffee and condiments, did you notice any types of sugars that effected you?
 
I was the best I have ever been since my crohns since no wheat and diary.

Wheat caused massive stomach pains

Dairy caused mucus and feeling to go even after a bowel movement +wind!

I didnt exclude sugar at all just tried to not have too much, ate haribo and drunk coke.

I think its the sugar lactose that causes everyone's problems.

The only reason for my fissturla development was I slipped up on diary, found it in food I didn't. realise would (Indian food and crisps mainly) since it developed my problems were just the fissturla being irritated from bowel movements leading to my stoma
 
Thanks jezer :) Really looking forward to trying sugar again lol. Not quite ready cuz im scared it will flare me but I think I will start with a really organic pure sugar in my coffee! Will let everyone know what happens when I do =P

I agree that wheat/grains and dairy are big triggers in so many. Its funny too because I that was basically all my diet consisted of for the past decade before I found my diet lol. Its probably why NO medications ever worked for me but prednisone.
 
Hainman mine was an emergency I didn't want it still hate it now. Nearly 8 months on but I wouldn't be here without it. I was hoping for a reversal but I feel I haven't got a choice with being diagnosed with indeterminate colitis which means they don't know whether it's crohn's or colitis. So I'm going to opt to have my rectum removed:-( so my stoma will be made permanent:-( to be fair I don't want that but don't have a choice once again sigh x
 
Cheerbear12
Take good care of your rectal removal! Mine was 2 years ago and I am in severe pain right now cuz I have an abcess now draining and hurts so so bad 3-4 inches deep. Its where a huge whole used to be from the 2 more attempts to close the infected wound. My surgeon didnt tell me anything but leave it alone just let it heal. If you think something is wrong or a smell is coming from the wound, dont let them say its normal cuz smell is not!

Off the subject, I added BBQ sauce to my SCD diet yesterday and am still symptom free! Illegal ingredients were molasses and high fructose corn syrup. Will continue to eat them as long as symptoms stay away! yay lol
 
Snoflayk505 said:
Cheerbear12
Take good care of your rectal removal! Mine was 2 years ago and I am in severe pain right now cuz I have an abcess now draining and hurts so so bad 3-4 inches deep. Its where a huge whole used to be from the 2 more attempts to close the infected wound. My surgeon didnt tell me anything but leave it alone just let it heal. If you think something is wrong or a smell is coming from the wound, dont let them say its normal cuz smell is not!

Off the subject, I added BBQ sauce to my SCD diet yesterday and am still symptom free! Illegal ingredients were molasses and high fructose corn syrup. Will continue to eat them as long as symptoms stay away! yay lol
Click to expand...

Well that confirms it, if yiu have a abcess from rectal removal, I see no point in it being removed. I will be making that clear to my surgeon!

My stoma has helped little for my abcess, so I will be telling them I want it reversed, and my body eill sort itself out!
 
How do you look after the rectal wound and the stomach wound? Is it hard coz you can't see it? I'm scared:-( thanks tho xx
 
I dont know I feel like he should have told me to clean it or something. Still dont knwo hwo you are supposed to take care of it. I think even showering is enough to keep it clean. I was in alot of pain so didn't really take a shower often. Just make sure you are clear on the after care instructions. I hear complications with it is so rare. Im just the worst case scenario
 
pretty shit right now,on this questran and its not helping with the problems im having.just waiting to hear from the GI to see if im back on the preds to get me through my holiday to majorca.dont fancy going on my jollys to "hunt the loo" haha
hows things with you??
 
Well, I'm hoping you can enjoy your holiday! As a prior 'professional loo hunter' myself, I sympathise!

I am having a sofa day. Dr gave me Augmentin for an infection and it's knocked me a good one. Major pain and vomiting, my favs. I hate missing a day of work, but couldnt be helped today. Needless to say Augmentin will be on my list of 'do not takes'. :frown:
 
thanks terriernut and cheerbear12 hugs gladly accepted lol ouch terriernut not so good.yeh its never a truer word when they say"i've got an app for that" toiletfinder is a godsend
even had to pass on a family dinner tonight but blessing in disguise haha so sitting with my curry pies and a quite house
def getting on this holiday if it kills me,my wife says she wouldnt mind if i cancelled and got my op but think a wee week in the sunny will do my wee peely wally scottish body the world of good,i might even come back pinky red :)
 
bowel removal but im at the end of the line as treatment goes so im kinda ready for it and get my life back to a degree.
thanks cheerbear12 im going to go MENTAL lo might even have a couple of cerveca's or a wee bottle of vino and get hammered lol
hardcore scotsman me haha
 

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