Thanks Anna its still painful but bareable not taking painkillers as often. I still can't sit for long on it. The infection did knock me for 6 that was a couple of weeks after op. how you doing?
The dogs danglies....love it. A true Scott! My mother is from good old Dalry in Ayrshire. Yes, it is a relief to have a place to turn. Here in a london I have't met anyone with my wonderful toilet capabilities.hey Zackattack,
this forum is the dogs danglies.....ive sufferd for 7 years,had all the meds they could give,only thing that worked was prednisolone steriods which due to years on them caused Osteopenia,had my op 3 weeks ago and my biggest problem was the stitches in my rear end,caused me more pain sitting down that the stomach wound which was from bits to belly button,as soon as the stitched were removed i was sitting down pain free,albiet a bit numb after a few hours,but just talking with fellow osties is a big bonus,keeps you sane as no matter what your family say they will never really know what you go through,but i do have a good bit of banter with family and friends,the biggest laugh in hospital was when my wife read the book from dansac and seen a bit about Phantom rectum,my mates have renamed me that name and told me to start a Facebook page in honour haha
hope you find some peace of mind here the way i have.....
My first ileostomy was temporary and this one may be. I had the first for a year and was relatively well when I had it but started getting problems as soon as I was reconnected. A year and a half later i ended up with this one which may or may not be temporary depending on how I'm doing. There are no medications left to control my crohn's so the ileo is the only alternative but doesn't ensure the crohn's won't return upstream of it.
Samboi has a temporary ileostomy for bottom problems - so far it hasn't helped but things are improving with medication so she may get a reversal later this year.
I think it depends on what you are having the stoma for as to whether it is successful both during and after the reversal.
Is your liver condition crohn's related? I really feel for you having to deal with that on top of everything else. I know what you mean about not 'feeling' the reality of the situation. I guess its the minds way of coping with what is a very 'unreal' situation. Probably good to be feeling like that and taking one day at a time rather than worrying and obsessing about the future.
I know that for myself, when they realized I had crohn and not UC like they first believed, they told me that reanastomosis (or any other reconstructive surgery) was not the best idea with crohn. Often, if you have a full colectomy, they have to build a J-pouch (a resevoir constructed from your small intestine) and, with crohn, because it can affect anywhere from your mouth to anus, it is not highly recommended. Inflammation can install in these tissues and that can lead to major problems(pouchitis, etc) which often require to go back to ileostomy.They (and by "they" I mean my GI doc) are telling me my ostomy may be permanent depending on some Crohn's thing I don't totally understand - supposedly if they try the surgery to reconnect me, the Crohn's may then attack my small intestine. I thought that could happen anyway..? Can anyone explain this any better?
Yes I have tried biologics but unfortunately they didn't help me. Most people find they help though so don't be discouraged by my failure. Interestingly my GI has retrialled me on sulphasalazine and although I was unable to tolerate it in the past this time it is not making me sick although I am very fatigued. But I'm often fatigued so maybe its not the sulpha....I would be surprised if it does work as nothing has so far but sometimes the old meds are good ones so fingers crossed.
How are you coping with your stoma. Any improvement?
:heart: anna
I can't believe your GI won't put you on any meds until its reversed. That's alittle scary. But again I kno that every situation is different. I have CD and I just had my colostomy surgery. I'm a newbie. I'm only 1wk post op ( already seeing improvement). Seeing my surgeon in another wk. And seeing my GI in a mth. I was on cimzia for 2 yrs with no luck. Hence the surgery. But he absolutely believes its necessary to go back on cimzia bc he doesn't want anything to switch the Crohns to high gear. We don't kno what makes the disease to flare bit we hope with meds it'll keep it in low gear. Good Luck with everything.Well I'm still having trouble with getting a bag to last a day or two. I'm out of hospital and now it seems I'm house bound because of the bags. We have tried so many different ways with it. The skin just under the stoma is very red and sore I'm just at docs to see if they can suggest a liquid antiseptic.
My GI isn't putting me on any crohn's meds until next year when I get the stoma reversed.
Take care Anna
I also agree, if you are having a flare they should put you on something now because to wait and do a reversal especially when you are having a flare you will probably need to end up on bags again I really don't understand the reasoning behind that. Most dr's would help your symptoms before thinking about a reversal so you have more of a chance to not need to have surgery again soon after. Also for the redness around your stoma have you tried stomahesive powder? I use it and it helps calm it down, you can try to get a sample and see if it works for you.
wooHOO!! You go girl!!!! :dance:Well I got 3 days just out of my bag woke up this morning day 3 with a small amount of leakage! I'm quite proud of myself considering my stoma nurse could only make it last a day if that. I've got rid of the redness which the stoma nurse couldn't she told me I would have it all the time until my reversal in jan and she couldn't do anything to help me any further. Just goes to show what they really know! I sent her a picture of my skin with no redness & telling her I was getting 2 days out of my bag and was applying the bag a different way to which she told me to and mind u a lot less fuss and a lot less products, and as I thought I got no reply. As they say less is more! Going to be interesting when I go for my appointment with her this month I can't wait to hear what she has to say! I believe with the 5 weeks in hospital she & the ward nurses irritated my skin with all the stuff getting applied not working and getting ripped off nearly 2-3 times a day! What they did and couldn't fix I fixed in 2 days with baby rash powder! Now why couldn't they think out of the box?
...It was worse when the Crohn's was really bad and I was incontinent all the time. Although a pouch burst in public would definitely suck...I had mine break twice at home within a few days, but thankfully I was home alone. The one time was a HUGE mess. HUGE. *facepalm*The other day I had to stand outside a single bathroom stall for 15 min till the person was done and it got me thinking about how nerve wrecking it is if you need to get in and change your bag due to a leak. I mean if its a small leak you can wait but if the bag bursts that's a nightmare.
I also need time to change my bag and being in a public bathroom unprepared will take me more time to ensure everything is sanitary. Do you guys worry that a long line of orople will congregate and start screaming mad that you are taking too much time?
I guess this is where the state we're in prior to getting a stoma affects how we feel about the stoma. Before my surgery, it would take me on average an hour to have a bowel movement. Sometimes up to three hours. I have nerve damage, so even though I usually had diarrhoea, straining to get it out was painful and took forever. Plus it could be so explosive that I'd need to strip all my clothes off prior to going to the loo, and shower afterwards. Sometimes I couldn't finish emptying my bowel, and any stool left in my rectum would then some out a little while later, usually when I stood up - i.e. I'd have an accident. This situation had been deteriorating for many years so that by the time I had the surgery, using a public bathroom was just not an option. Emptying the bag - even changing the bag - is so unbelievably quick and mess-free from my perspective.The other day I had to stand outside a single bathroom stall for 15 min till the person was done and it got me thinking about how nerve wrecking it is if you need to get in and change your bag due to a leak. I mean if its a small leak you can wait but if the bag bursts that's a nightmare.
I also need time to change my bag and being in a public bathroom unprepared will take me more time to ensure everything is sanitary. Do you guys worry that a long line of orople will congregate and start screaming mad that you are taking too much time?
I agree with you, we have all been through so much that we appreciate the little things people take for granted everyday more and we are inspirations to each other with our different stories and struggles. I'm glad we have this forum to lean on each other and share stories and advice on it really does help to know we aren't alone dealing with all these things. I'm not doing too good at the moment but it has nothing to do with my Crohn's Disease or ileostomy I've been in remission since having my surgery to move my ileostomy back to the right side in May 2010 so we were trying to conceive our 1st child for a couple years but have had no luck and just when I was getting ready to start getting tests to see if there was a problem conceiving on my side or his or both I find out I need to get surgery to remove large masses on each ovary which causes pain and could possibly be cancer so I might need to get them both removed completely or possible more like the Fallopian tubes or hysterectomy. My surgery was scheduled October 8th but got put on hold due to my pre-op chest x-ray then I got referred to a respiratory specialist and had a Bronchoscopy done which shows the pneumonia I had for over 7 years that scarred or lay dormant in there all this time is now active again and I have an infection in my lung and also my lung is partially collapsed from all of it and it's all my right lung so I'm on antibiotics again for 10 days I did have a 7 day dose of antibiotics but my fevers started spiking again after I finished them so yesterday I had a chest x-ray and got put on another dose of antibiotics which are different than the other ones I was on. They make me super nauseous I've had a rough night barely slept but I'm hoping this clears it up so when I see him on January 7th I can get the ok to get the surgery scheduled again hopefully. Right now they are waiting to see if the lung biopsies which are in an incubation period grow anything else on them that's why there's such a long wait between when I see them next to get retested with a chest x-ray the week before my appointment. I'm doing great Crohn's and Ostomy wise though thanks for asking. How are you doing?It is and glad it's not just me they don't tell you these things and the impact it has on your body image I sound ungrateful and I'm not if it weren't for the surgeons... I wouldn't be here it doesn't bear thinking about. All of us have been through a lot and we're all inspirations to each other. We appreciate life more it's so precious how are you doing?
Sorry, I didn't mean to sound dismissive, just that in terms of the time spent in the bathroom and the difficulties involved in using public bathrooms, the ileostomy has led to huge improvements for me.Pre surgery I was in the bathroom 20 times a day with explosive diarrhea and pooped myself several times a day and was in adult diapers. It was miserable but that doesn't make a stoma feel anymore normal. It's more manageable but of course I just want a regular system with regularity.
Thank you CheerBear12, I'm worried about conceiving a child with my ileostomy and all my problems but I went to see a high risk maternal fetal medicine Dr before we started trying and he's going to follow up with me once I'm pregnant hopefully if I can after all this as he had many women with Crohn's disease and ileostomies that he followed and he said my case is difficult but he doesn't see why I can't get pregnant it's just I'll have to be monitored very closely. I've had these masses over a year now and I was thinking the pain was from my Crohn's the whole time as I had my ileostomy moved from side to side several times so we figured it was scar tissue pain as there was no inflammation showing on x-rays so I just dealt with the pain but now I know I'm still in remission and it's my ovaries so I'm really hoping I stay in remission after the surgery to heal up and hopefully get the chance to try to conceive again. I will definitely post when I know anything new I'm hoping I get cleared by the respiratory specialist in January so I can get this surgery scheduled and done with.Melindar- I'm so sorry you are going through all of this thinking of you here for you anytime big hugs. I am worried about conceiving a child after having a permanent ileostomy done some people have probs and some don't. I'm hoping I'll be lucky and be ok when time comes. Can anyone put me at ease on that plz? But plz plz make sure you let me know how you get on when is it scheduled for now?:ghug:
I find this too. It's much easier keeping everything clean.I find cleaning my stoma much easier than I ever found cleaning my rear end. At least you can see what you're doing and get everything super clean before you put the bag back on.