Surgery soon :D discussion with surgeon

[Ki3]

So I have been in hospital for 1 week, had an MRI and revealed a 12cm stricture. Surgery is the most likely apparently and hopefully within a week we will have an appointment with my surgeon to discuss the possibilities. It is possible I will have to have a temporary ostomy during the healing process or it might be left in one piece. They said they aren't sure what exactly they are doing until they see what its like inside so I might be getting a lucky dip :S

Im actually really excited and not nervous at all, I think it would be a great learning experience to have an ostomy and if its not needed then I should have a healthy intestine again

Ill let you all know when I hear any news and please leave any advise you have

 

[nogutsnoglory]

It really depends on where they cut, previous resections and the philosophy of the doctor. In
most cases you can avoid a bag. They may also opt to do a strictureplasty. Definitely ask about that and the bag so you can get as much info as possible.

 

[highlandsrock]

Hi Ki3

Where are you likely to have your surgery? I was due to go have it done in East Surrey but in the end they referred me to St.Thomas'. (That was 3 years ago and I haven't really looked back since). If yu want to know what the experience was like have a look at http://www.crohnoid.com. I'm slowly going though it, correcting the spelling mistakes and adding more details.

Following surgery, and a few little hiccups, I've got my life back. Let me know how you get on

Regards, Nigel

 

[Ki3]

Hi,

We are going to discuss what exact surgery they will do, weather it be strictureplasty or resection, bag or not, it all depends on the convo with the surgeon and what im like inside. The surgery will be done at St Georges as that's where my (terrible) doctor is based. Unfortunatley the talk has to be at st georges too so we have to travel an hour to her hospital for a talk instead of east surrey where we live.
I have not had any previous cuts or ops on my intestines so that wont affect it. Im hoping they will do resection just because all my crohns problems are in that 12cm space, so I would rather them remove the bad parts rather than try and save them.

Oh! Btw, does anyone know good tricks for the shoulder/arm/neck pain you get after an MRI? Like you know you have to lie on your stomach with your arm up and your nose on your chin, well I cannot move in the slightest bit without it hurting! Feel so bruised!

 

[Ki3]

 

[emmaaaargh]

I don't have any advice for the MRI pain - I have to say, I didn't have to lie like that when I had mine! - but I wanted to wish you luck with the talk!
I had a stricture when I was 11, and they put me in for surgery. 30cm of my ileum was removed via keyhole surgery and it managed to put me in remission.
Let us know how you get on - and I hope it all goes well!!

 

[Ki3]

Thank you! I thought 12 cm was a lot haha but 30 seems loads! I guess I have more intestine than I realised! I hope we are receiving a phone call today about when we are having the talk as she said it was urgent, but then again 3 weeks ago she said a scan was urgent and I only just had that. I will let you know if I hear anything xx

 

[valleysangel92]

For the arm pain after Mri - get some ice or frozen peas, wrap them in a clean cloth, put that on your shoulder ( for no more than ten mins at a time.) You could also use a hot water bottle, a wheat pack (like a big bean bag that you put in the microwave) , deep heat gel or spray, deep freeze gel or spray.. or a nice hot bath or shower should all help to ease the muscle tension. I've suffered with shoulder and neck pain since I was 12 and all of these things really helped me.

Three weeks is quick for an MRI in the UK.. I had to wait three months for mine and another two months for my results, so your doctor probably did mean it when she said she'd put it in as urgent.

I hope your appointment with the surgeon comes through soon and you can get a quick date and get on the road to feeling better and enjoying your teen years again .

 

[yellowamc]

Hi I am new here, but I have had two surgeries. First was a stricturplasty sry spelling isn't the best. Second was a resection I had 12inches removed. I was going to a doctor that basically for lack of better words had a factory going. I kind of fell thru the cracks. When the double doses of remicade stopped working, I basically demanded surgery. So I understand wanting to have it done. Good luck I hope it goes well for u, and keep up that good spirit.

 

[Ki3]

Update: So my doctors secutary rang my dad and said she is unsure of if we actually need to see the surgeon as there might be a way to treat this without surgery, so I might not need it ...
I cannot describe how angry I am. I know why they are doing this, I can tell. I'm only a child (13) and most parents want the easy way round, every kid wants to swallow a tablet and be better, have it the simplest way, but I just want the right way! I don't care if I have to go through painful surgery and have an ostomy, if it is the best soloution in the long run then that's what I want! I want my life back I don't care what I have to go through to get it back!

I remember when my doctor told me I might have to have a stoma after surgery and he quickly said "but there are many ways to avoid it" and I was thinking "I don't want you to avoid it, If It is what I need its what I GET!" They are trying to make my life easier but they are making it harder.

I just want surgery to get this stricture out I'm not a scared little girl and if they don't cut it out I'll do it myself!

Sorry to sound so angry but it really pisses me off. My surgeon should ring my dad today and hopefully book an appointment to go and talk to him.

 

[Ki3]

Still waiting on the surgeon, my doctor rang and apologised that nobody has said anything, she apparently said to the surgeon that I am an "urgent case" but he still hasn't spoken to anyone about anything so we are just waiting around. It is the weekend now so we wont hear anything for another two days at least. I was told I might need "urgent surgery" like 4 weeks ago and still nothing is happening. I feel sorry for people who like can't breathe without being in pain because if this is "urgent" treatment it takes a bloody long time...

 

[valleysangel92]

I'm sorry to hear that you are still waiting, I know how frustrating it can be but unfortunately, the definition of 'urgent ' from a patients point of view can be very different to that of a health care professional .

I felt like I waited a long time for my surgery. I waited 2 months for a surgical consult then I waited 3 and a half months for surgery instead of the 1 month it should of been, and I felt like this was unfair.. Until I found out why. My surgeon happened to be the best the hospital could offer, he was a leader in his field and had long waiting lists of patients eager to have him treat them.. many of his patients were cancer sufferers, if they didn't have surgery soon they would die. My brother informed me that he knew of someone who had my exact condition, who was being treated in Wales' biggest (and supposedly best) hospital.. They had their operation cancelled 3 times and have been waiting over a year.

I know it's horrible waiting and being stuck in pain, but sometimes it's not the doctors fault, sometimes there are just too many patients, our health system is being stretched to the max and unfortunately it's the patients that face the brunt of it.

I hope you hear something soon, hang in there and keep your head up.

 

[Ki3]

Update: We have an appointment booked to talk with the surgeon tomorrow at 9am My doctor wanted me to wait until next Wednesday so she could be there but my mum said she wasn't waiting that long. There is also a lady coming to meet me and sign me up for this online school thing as Ive missed so much.

 

[nogutsnoglory]

Good luck! That's a nice doctor, I never had one accompany me to a surgeon appointment.

 

[Ki3]

Ok I'm back! The surgeon seemed nice and obviously isn't as busy as I thought he would be! Should get my surgery next week or the week after! I'm so excited! He normally does surgery on a Monday but the Monday approaching is too soon as I'm coming off the steroids before surgery so he will try and get one for late next week, but if not then Monday the 25th. I will not find out about weather or not I will have an ostomy until the surgery happens so I will have to sign a thing to say I agree that when when I wake up I might have one or not.

SO EXCITING

 

[valleysangel92]

Wow that's fast! It's good to see you have such a positive attitude, that will really help you when you wake up from the surgery and don't feel so great, a positive attitude is key to getting through it.

It looks like you have a pretty fast taper to do.. What dose of steroids are you on at the moment? The only thing I would say is to be careful you aren't coming off them too fast, sometimes that does more harm than good.

If you have any questions, feel free to ask, or you can just inbox me if you have anything you'd like to talk about privately.
Good luck lovely! I hope this is the start to a long and successful recovery .

 

[Ki3]

Thanks and ikr its so quick! I was surprised! I was expecting the worst but I thought like at least 3 weeks! I think its gonna be a bit weird when I'm put to sleep for the surgery, because I'm not going to know what I'm going to be like when I wake up, I might have a stoma, I might not, I might have the area removed or I might just have it opened up a little, I'm not going to know until its all done.

And I'm on 5 tablets a day today, tomorrow I go down to 3 for two days then 2 for two days and I stay on one until we know a date for surgery. That's why he wouldn't do my surgery on Monday even though he could, because we would have to reduce the steroids too quickly which they don't want to do. Just gotta wait a week or two and then recovery begins

 

[nogutsnoglory]

Do you know how many milligrams of pred the 5 tabs are?

You are doing a fast taper so you might feel kinda yucky and know that will pass.

 

[Ki3]

I think 6 tablets was 30 so I'm guessing 5 is 25mg?

 

[valleysangel92]

In the UK prednisilone is most commonly given in tablets of 5 mg each, so yes 5 tablets would be 25mg. As ngng said you might feel a bit rubbish since you are doing a fast taper, a lot of people only do 5 mg a week.

It is strange to go to sleep not sure how you'll be when you wake up, it's a feeling that many of us here can relate to. You have a good, positive attitude and it seems like you have a good, kind surgeon who I'm sure will take very good care of you .

 

[Ki3]

Yeah I think she said it was ok as I'm only on a short dose of steroids it shouldn't be too bad, but to be honest I don't mind if I feel bad as I'm getting the surgery so quickly which most people wouldn't be able to.

 

[nogutsnoglory]

In a way it's good to have all the crappy feeling in one shot pred taper and surgery. Hopefully soon you will be all good

 

[Ki3]

The last two days havnt been great, and I'm loosing my enthusiasm quickly. I seem to be going downhill- and badly. Last night I had really bad pains higher up in my stomach and throat, which was confusing for me as my problems have always been very low down (my doctor did actually mention she recently found inflammation higher up, so I'm not worried) but anyway the pain is getting very bad last night I almost asked to go to hospital but I managed to fight through and it passed. About 20 mins after my smoothie earlier today I felt extremely sick, got all hot and sweaty and lets just say going to the bathroom was an unpleasant experience. I'm not sure how much harder this is going to get but the last day has not been fun :/

 

[valleysangel92]

I'm sorry to hear you're feeling so rough, unfortunately this can and does happen frequently when we start to taper pred, especially when we do it as fast as you are. Pred withdrawal is horrible, but it does pass, just try to hang in there, I know how badly you want this done quickly and unfortunately that does mean tapering fast and nasty effects. Hopefully it will all seem worth it in a few weeks time when you're home recovering and hopefully well on the way to remission

 

[Ki3]

Yeah I'm just hoping it wont be that bad solid for two weeks if that's how long it takes for the surgery as we don't have a definite date yet.

On the plus side the community nurse rang and said that apparently someone signed me up for the make a wish foundation and we are waiting to hear if I am eligible for a wish! I didn't think I could as I'm not like lying on my death bed but apparently I might get a wish so that's exciting!

 

[valleysangel92]

Well hopefully it won't be, your body should adjust to weaning off before that, but you may still have some crohns symptoms.

Aww that's amazing, the make a wish foundation is for kids and teens with all sorts of conditions, it doesn't have to be terminal, it can be something like crohns which is chronic and can be horrible to deal with. I hope you get to make your wish, it would be good for you to have something so positive .

 

[Ki3]

Yeah I think once I'm on the one steroid a day which I will stay on until we hear further instructions I'm hoping my body will calm down a bit.

And yeah I'm so excited for the make-a-wish thing (if they say I can) but I'm trying to think of what I would wish for! Its so hard to decide but I have to wait and see if I am getting a wish before I start getting excited.