Acceptance

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kiwij64

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Jul 5, 2012
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I've just received a letter from my surgeon and gastro specialist who have advised me that my chances of a successful reversal are about 10% given that I have Crohns in my rectum and have fistulaes and perianal disease (not even sure what that is!). They recommend that my ileostomy become permanent.

I have to say that I read this letter with a calm acceptance which kind of scares me a bit, because it almost feels like I'm numb or this is surreal or both, or maybe I have just accepted it and this is how acceptance feels.

How did people accept their news?

The other bit of info is that I finally got to see my rheumatologist (only waited 3 months in agony!) and he is filling out all the forms and jumping me through the hoops to see if I can get accepted for Humira. The downside of this is that I will have to put up with my current level of agony for a few months yet, which is really awful but I guess if I want to get the best medication then that's what I have to do.

I've also been getting up three to four times during the night to empty the air in my bag so I'm probably very sleep deprived which explains maybe why I'm acting like such a space cadet right now!!!!
 
Hi Kiwi.
I'm sorry about your bad news.
Perhaps wait and see how Humira works before concluding the worst.
My Stoma is temporary too - although less temporary than initially proposed.
I too have perianal disease and Humira does not seem to solve my perpetual fissure issue.
I have recently accepted that the bag will probably stay a lot longer than the initial 6-12 months proposed.
I have actually decided to keep it perhaps until a new treatment is developed. If I wreck my bum - I will lose it forever. If I'm patient and wait - I might be able to save it. And when the Stoma was put in - my bum was pretty wrecked. I don't want that to happen again.
I guess you can hang on to that 10% chance.
See what happens - you might get lucky and get your bum back.
Good luck with the Humira. I hope it works for you.
 
Thanks Samboi. There is no guarantee I will get Humira yet, just going through the selection process, and if I do qualify, then I have to wait three months to get it as I still have to have an MRI to determine if I have inflammation in my sacroiliac joint and I have to undergo three months of intensive physio for my AS as I wasn't eligible through Crohns to receive Humira given I've just had my large colon removed.

I applaud your choice, if I were in your shoes, and I think I may be, then I think that would I have chosen too. Sometimes it's better the devil you know than the devil you don't and sometimes the risks are just far too high, even for me!

I'm not quite sure what perianal is, I've just received the letter and I'm still trying to work out all the bits and pieces in it as I haven't had this new info explained yet. I've been getting my diagnosis piecemeal so it's been really hard with lots of shocks along the way, hopefully this is it for now.

How are you dealing with your bag and what do you find is the best bag for you? I've just been on the phone to my stoma nurse today to tell her that I want more than the allocated two bags per week as my chest expansion and constriction is less than half of a normal similar aged woman and I'm up three times a night 'burping' my bag as it is nearly threatening to burst because I take so much air through me because of my breathing problems. She is going to talk to her 'managers' but can't promise anything because I'm a bit of anomoly! I swear I don't get it when you tell health professionals that you can't cope and then they tell you that! It's a pretty mucked up system here!!!

Anyway, thanks heaps for your advice and knowing that there's someone out there :smile:
 
I fully agree with Samboi, wait for the Humira to start healing the fistulas. It's kind of odd that you have this stage of the disease and have never been on a biologic? have you been on any 6MP's? Even if you try Humira and still have to have a permanent Stoma, there are a lot of people on here that have one as well, good luck and make sure you find something everyday that will put a smile on your face, its the little things that matter.
 
Perianal disease just means your Crohns manifests around your anal area.
It presents as fistulae, abscesses, skin tags or fissures.
Humira is meant to be great for perianal disease.
It's helped mine - just hasn't cured it :(
Infliximab has in the past - literally overnight!!
I'm hoping the next line of vaccine based medicine will give me my little bum back.
I just have to wait a few years.
I got nuthun but time!!
 
Hi I'm in the same boat, apart from a small amount of disease in my small bowel most of my problems are caused by perianal disease, at the moment I have a loop colostomy to allow the perianal disease to heal, although as I've said in other posts I feel quite cheated as I am going to the toilet normally at least once a day, in fact yesterday the stoma didn't work all day and around 8pm I felt I needed a bm and it was only as I was sitting on the loo going normally that the bag worked also, so I really don't know how much of a rest my tail end is getting! I'm waiting to see gastro to see if he's planning on starting any medication as I'm not on any and I'm allergic to remicade so they won't try any other biologics.
 
Hang in there and see how the Humira works for you as the others have said. It could do wonders for you!!

Major Hugs!
 
Samboi said:
Hi Kiwi.
I'm sorry about your bad news.
Perhaps wait and see how Humira works before concluding the worst.
My Stoma is temporary too - although less temporary than initially proposed.
I too have perianal disease and Humira does not seem to solve my perpetual fissure issue.
I have recently accepted that the bag will probably stay a lot longer than the initial 6-12 months proposed.
I have actually decided to keep it perhaps until a new treatment is developed. If I wreck my bum - I will lose it forever. If I'm patient and wait - I might be able to save it. And when the Stoma was put in - my bum was pretty wrecked. I don't want that to happen again.
I guess you can hang on to that 10% chance.
See what happens - you might get lucky and get your bum back.
Good luck with the Humira. I hope it works for you.
Click to expand...

Heya, I have perianal disease too, just fissures not fistulae or abscesses (well just one time an infected ulcer). Did you have your ostomy because of perianal disease? How bad were your fissures?? I'm starting Humira very soon.

Hannah x
 
Hi Hannah
I have the stoma because of the perianal disease. My gizzards are totally intact - no strictures or resections etc.
My anus was so badly fissured - it was just a gaping bloody hole. The surgeon took a pic of it to show his students - he was shocked at how bad it was.
And yup - just fissures. They will just not go away. No fistulae or abscesses.
I am now actually slightly terrified of having a reversal. Eek!
 
Samboi said:
Hi Hannah
I have the stoma because of the perianal disease. My gizzards are totally intact - no strictures or resections etc.
My anus was so badly fissured - it was just a gaping bloody hole. The surgeon took a pic of it to show his students - he was shocked at how bad it was.
And yup - just fissures. They will just not go away. No fistulae or abscesses.
I am now actually slightly terrified of having a reversal. Eek!
Click to expand...

Wow that's amazing, finally somebody in the world who has the exact same symptoms as me! I've spoken to people with perianal disease before but they usually have symptoms besides fissures. Do you mind if I private message you later to ask more about your symptoms??

Hannah xx
 
Sorry to hear your news hope it works for you soon. I haven't accepted mine yet it makes me feel really upset when I think that I'm going to have to live with it forever. Don't think I ever will. I was hoping to get it reversed but with being diagnosed with indeterminate colitis I feel I have no other choice:( I hope I hold it together when I go see them in November to tell them my decision..
 
Hi guys

Hiya,
Thank you all so much for your replies. I'm laid low with the flu at the moment but when my brain clears of all the crap that's in it, I'll come back on and be able to answer you intelligently (I hope!).

But I just wanted to say thank you, it's great to have this level of support
Kiwij xxxx
 
To be honest, I'm glad that I knew mine would be permanent right from the start. So for me it was either accept it or hate my life. And accept it, I have. Sometimes people with stomas feel like they are outsiders and different to everyone else, but I feel like the only person with a stoma who could really care less about it. I've gotten used to mine really easily, LOVE LOVE LOVE that I never get urges to go to the toilet anymore or have to hold in wind when I'm out. No one else seems bothered about it either. I'm open about my bag and everyone treats me the same as they did before. Guys are still interested in me and life just feels exactly the same as it did before the op apart from the fact that I don't get stomach aches and have the added benefits of the bag as above.

I don't honestly know why I feel so great about it and others not. Maybe it's the years of counselling I've had before hand lol. But I really, really hope you eventually see this as being a good thing and don't let it rule your life. Life is for living! Just hang in there and I hope things go ok. I do know that it's natural to feel upset and down when you are hoping for one outcome and it doesn't happen. I hope you feel better about things soon!!
 
I wish I felt the same way you do really. I should have known as well coz my surgeon said it was the worst he had ever seen:eek: it doesn't make it any easier. How long have you had yours? Does it get better with age eg depends on how long you've had it? I've had mine since nov last year xx
 
How old are you, of you don't mind me asking? I got mine in October, so not much longer than you. Have you had many problems with yours? I think it's majorly how you deal with it mentally. I've been telling everyone that I wished I'd had it done years ago as it would of prevented so many years of pain and my crohn's holding me back, especially when I lost my colon in the end anyway. But I don't think I would of dealt with it mentally well before now. I had some intense counselling the year before I had my op. It helped me deal with long term issues I had from being ill for so many years when I was a child, and now I find it so much easier to cope with things. Counselling isn't for everyone, but I would definately recommend it to anyone that's finding things hard to deal with.
 
I'm 21 :( I was depressed before it and afterwards I think that was a mixture between what I was going through and the pred. I have got a diagnosis of indeterminate colitis which means they don't know whether it's Crohns or colitis. I haven't had any probs with it it's just coping with it mentally:( it was an emergency as my colon could of burst at any time which could of killed me. I didn't know at the time they never told. I need to go bk in nov to tell them my decision. I wish none of this had ever happened what have I done that is so bad to deserve this. I should be happy tho coz I've got my life bk now I guess I'm having a bad day.. But I've had it nearly 9 months now:( thanks for this really appreciate it xx
 
I would like to add it all happened so quickly with me I had been suffering with problems for 4 months before I done anything about it. I just got Imodium from my doctor to see if that would help it didn't and by this point I was in absolute agony with my stomach and could hardly move with the Pain. I got admitted to hospital on 29th October they tried prednisone, flagyl and one infliximab treatment wasn't working and finally had the op on nov 22nd. Thinking about it now the Imodium probably was the reason why my colon was in such a state and about to perforate. But we will never know. I just wish I had gone sooner and this might not have happened xx
 
Then it's not really surprising you're struggling. I nearly had the operation as an emergency back in Feb when I got an obstruction. That's when I decided for sure that I wanted to the op and to have it on my own terms, planned and done with the best surgeons. Having yours done as an emergency and so quickly must of been a HUGE thing for you to come to terms with. It's like your life/body has spun out of control and there's nothing you can do about it. Especially it you were depressed before hand. I promise you that it's not the end of the world and it is completely possible for you to start feeling better about things. Time will help but I really would consider getting counselling if you've not before. I got mine for free through a GP. You seem like a really lovely person, so I really hope things get better for you soon.
 
It was the hardest most traumatic thing i have ever done in my life and I really couldn't have done it without my family. They were amazing but I think I would have completely lost it if I had found out the op was too save my life. The surgeons made a good decision in not telling me they only told my parents I found out the next day:( I was upset enough as it was without being told that:O I was under so much stress there's no wonder my hair fell out a few months later its thankfully slowed down but still really thin. I hope your right and will be the healer. Thanks I go see my gp haven't had counselling for it before. Hope it helps and I'll let you know what they say in nov eek :( absolutely dreading that as well:( hope your well xx
 
Hi Cheer Bear and Misty Eyed, I'm the same as you, was admitted to hospital when I was really too far gone and only found out the day before surgery that I was having an ileostomy and so then had to ask to see a stoma bag, get a nurse organised etc., and then when I woke up from surgery, my surgeon told me that I had nearly died due to my colon extended to 8cm and was the consistency of toilet paper, they had to phone my husband mid surgery to ask him for his consent to remove my whole bowel and to tell him I might not make it, and then to add insult to injury, the surgeon whips out his phone and shows me a photo of the size of the colon that came out of me as he had never seen anything like that before in his life. My hubby had asked the surgeon to wait to tell me when he was there but the surgeon went ahead without hubby. So I kept on getting shockwave after shockwave. This was in April this year.

It is a hard road to acceptance and I totally understand where you are coming from and how you're feeling. When I was in hospital I asked for a counsellor only to be told there was nothing that they could offer, I asked again through the stoma nurses when I got out of hospital and got told that they refused me as I didn't meet the criteria (!) and then a couple of months ago when I saw my specialist, I asked again and now am seeing a counsellor who funnily enough sees people who have been throug medical trauma and who are able to see them on the wards!!!

It's helping. I've only been twice though so I know it's a long road ahead of me but just being able to talk to someone that doesn't know you and is unbiased really helps and also getting advice/support from here as well.

It's your mind that's the cruellest instrument, those thoughts that creep in when you don't want them too and trying to keep busy to keep them at bay. And obviously that a shock is the worst thing to get over. I can't pretend to be 100% about this, but I'm accepting of the fact that it's happened, that i can't change it, that it's ok to grieve for the person you were. The best thing the counsellor told me was that medical trauma can take 1-2 years to get over and we're only a short way through it so we can't be too tough on ourselves. Once I heard that, it made me feel a little better. And I hope it makes you feel a little better too. Maybe it's a good idea to seek out some counselling from someone who deals in medical trauma and whilst they can't relate totally to what you're going through, they might be able to offer some pragmatic advice that may help.

It really is about taking baby steps and not being too hard on yourself and finding out the person that you are now xxxx
 
Kiwij64 thanks for this it really has helped just hearing it from another person that we aren't alone in what we are going through. I hope it helps you and it must of been tough on your body as well. I will try and find someone that will be able to help me. Just feel awful coz in 3 months it will be a yr and I still feel like this so hopefully it will get better. I'm used to it I just hate it but I wouldn't be here without it. I can't thank the surgeons enough for saving my life I'm really grateful just don't like it. It sounds crazyo_O thanks again really appreciate it hope your well:) and take care xx
 
CheerBear, what you're saying makes perfect sense to me!!!!! As the counsellor said it will take a while and it's a huge thing that has happened to you and me. I hope you do find someone who does help. Like you, I am so grateful to the surgeons too. You take care too and I'm always here if you need to talk xxxx
 
Kiwij64 hopefully by next yr my feelings will have changed. I bet it will be right before the other one to make it permanent. I was hoping to get it reversed but there is no chance of that happening. I don't even want this next one but don't have a choice again as I don't want cancer in there life is so cruel and difficult sometimes. xx
 
God it sure is. I'm not going to even remotely write anything twee or cliched. As you know, it is what is and no amount of things that people say will make it better. All you can do is take a baby step at a time and try and find the small pleasures in life and to let them find you. Any hobbies you can take up or something that makes you feel good? I'm a bit housebound at the moment so had devised some hobbies to do around here but because of my arthritic pain, they're out of the window too so I'm reduced to watching telly (didn't realise how much crap there is out there!!!!)

O and try and retain a sense of humour....as hard as it sounds it does work.

Stay strong xxxx
 
I work most of the time but when I'm off i like to go out with my friend when she isn't working either which I couldn't do before when I was ill. I know that's not much tho. Sorry to hear you are mostly housebound bigs hugs. Hope you can get out soon and I do agree there is loads of rubbish shows on tele lol take care xx
 
Well there you go, that's something isn't it, going out with a friend? Sometimes it's just the little things that really do matter, when we think we want the bigger things, it's the small ones that get us through. You keep smiling and going out with your mate, I'm sure things will get a little easier for you in your mind, just try and keep laughing xxxxxxxx
 
I suppose it is thank you for this:) hope you get to go out soon. Hope your ok. I still hate but I'll try to get counselling does it cost? xx
 
I have no idea in your neck of the woods CheerBear but why don't you contact your specialist/doctor and tell them you're not coping and see if they can find someone within their system that will help with no cost to you. That's what I did and found someone to help. Good luck, let me know how you get on xxxx
 

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