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Newly diagnosed Crohn's - for surgery tomorrow

(23 Posts)
BoxofSnails Mon 15-Feb-16 04:55:15

I can't find an inflammatory bowel disease support thread - please do point me to one if it exists.
After 4 weeks of pain, hospital admission and multiple investigations they have concluded I've got a stricture due to probable Crohn's and need semi-urgent surgery. So tomorrow I'm having part of my bowel removed, and hopefully joined back up again.

It's been a real shock. I haven't quite got my head around things. I could have a high output stoma to deal with by tomorrow afternoon which scares me. As does recovery from fairly major surgery. Anyone else diagnosed like this? Or at a later point on the journey with success stories to share? I would really appreciate the encouragement/ handholding.

lozwil Mon 15-Feb-16 06:50:18

Good luck with the surgery I hope it all goes well no advice I am afraid, I am waiting for a gastroenterology appointment to find out if I have this or something else so could not read and run x x x

Pickofthepops Mon 15-Feb-16 08:42:05

I'm on the diagnosis path too so wishing you all the best and also interested in a support forum. It sounds like they have their minds focused to be treating you for a stricture. Whereabouts is your pain?

Pidapie Mon 15-Feb-16 08:54:36

My friend has this so I understand it's a very difficult condition to have sad I wish you luck with your surgery tomorrow, and hope your recovery goes well.

MyrtleMoans Mon 15-Feb-16 08:57:34

Look at blog for advice & support. I hope surgery goes well xxx

gobbin Mon 15-Feb-16 11:31:44

Surgery for Crohns is very common. You may be lucky and have a resection (I had one in '99) or you may end up with an ileostomy (like me in 2014, reversed and back to normal last year).
The Ileostomy Association website is good, as is Stomawise. The thought of a stoma is worse than the reality in all honesty, once it's settled down (couple of months).

There are loads of us on here with Crohns so just give us a shout out in General Health if you need advice smile

gobbin Mon 15-Feb-16 11:34:47

Oh, and don't be a pain hero. Take whatever they offer whenever they offer! My hospital uses a mixture of epidural or morphine/tramadol/paracetamol stepdown. I prefer the morphine route but others on the ward choose epidural. It may also depend on your surgeon's preference.

BoxofSnails Mon 15-Feb-16 12:44:44

Thank you for all the supportive messages. The stricture is in the jejunum, and I'm being fed in hospital with Modulen though I get very distended by the end of the day. The fact if I had a stoma it would be a jejunostomy bothers me. Sitting here thinking about it too much though!

Pickofthepops I had abdominal pain centrally in waves like contractions, and distension. I was starved for over a week before the refeed with Modulen and my pain settled. Living like this is not a permanent fix tho! - and I am told my case is rather unusual as I was well prior to a month ago, in which time I've lost a stone.

gobbin thank you for the pain advice - I will take it - I intend to do the breathing and sitting out that they ask for and take the painkillers they recommend.

Pickofthepops Mon 15-Feb-16 19:08:02

All the best for tomorrow, you sound very clued up. Hope all goes well and glad you're going down the max pain relief route - I'd be same!

wannabestressfree Mon 15-Feb-16 19:25:06

I have crohns and short bowel. Have had 23 ops and have a high output stoma. I work full time and have three kids. If you need any advice/ want to ask questions just shout.
I have dual care between my local hospital and St marks (surgery)

madamlala Mon 15-Feb-16 19:42:11

My daughter has Crohns. Diagnosed aged 11 and had Modulen (only) for 6 weeks which rested her gut, reduced the inflammation and helped her put on some weight. But didn't give her remission.
Now 16 and treated with immune suppressants and an 8 weekly visit to hospital for IV Biologics she is in remission and healthier than the rest of us although she will always be waiting for the next blood result to make sure things haven't slipped.
When it was at its worst, we could see the attraction of a stoma. She was lucky and she didn't require it but many say it is a relief after years of terrible pain and symptoms.
I would be cautious of forums. I went straight to them when she was diagnosed and they were very frightening. People whose lives were dominated by their disease. Listen to people like wannabestressfree who have uplifting stories. Many people with Crohns are out there living their lives and not at home on forums!
Get the best team you can. We bypassed our local gastro team as we don't like their policy of over medication. Instead we go to London (I googled to find who was doing all the recent research into children's Crohns and found the team at St George's Tooting) for her treatment. That is your choice.
Loads and loads of great research going on all the time. Even since she has been diagnosed, there is progress.
Good Luck and stay in touch.

wannabestressfree Mon 15-Feb-16 20:00:58

Ah thanks madam smile you are right though. Crohns is a small part of who I am it doesn't define me as a person. The stoma for me was a godsend as I am a teacher and was going to the loo up to 30 times a day and had no control. To begin with it was hard going but now I can change it in ten seconds flat.
I have a specialist nurse who comes to the house and brings me my bags and anything else I need.
I am.due to have surgery again but that's due to a GIST and I am planning it around my job and life.
You will be OK X

MrsPinotGrigio Mon 15-Feb-16 20:53:44

I have Crohns & had a resection last February. I had a stricture & a fistula in the terminal ileum & they removed just over 30cm of small & large bowel combined. It was quite honestly the best thing I've done. I haven't had any symptoms for nearly a year, my weight is finally back to normal & I actually look healthy for the 1st time in years. I was on Modulen for a month before my surgery to rest my bowel as I'd had an obstruction & the surgeon said it was resting my bowel & allowing the swelling to go down which helped me avoid a stoma. Good luck for tomorrow, do whatever the staff tell you to do, take all the pain relief offered & rest as much as possible when you get home. I also found the Crohns & Colitis website really helpful & they have a Facebook page & there is a closed forum on Facebook as well - loads of support & not too many horror stories. Take care & let us know how you're doing flowers

dreamingon Wed 17-Feb-16 10:28:02

Hi, I was diagnosed nearly five years ago with Crohns. I was diagnosed on the Tuesday at an emergency appointment after months of pain and within 2 days I had emergency surgery for a blockage and perforated bowel. I had a very high output stoma fitted.

it was a massive shock at first as i had no time to get used to it and although i had some leakages, etc at first as other people have said there are a lot of people on here who have experience of this. Some of the best ways I found of coping with my illeostomy was tips found on here such as eat marshmallows and jelly babies to thicken your output. I cannot stress how much this piece of information helped. Also a spoonful of apple sauce.

I had my illestomy for 6 months and managed to work throughout it most of the time. I had most of my bowel removed (not sure which part and I prefer not to know). I had it reversed and whilst it took a couple of years really to settle I would say most of the time now I am ok.

I have a dog which requires much walking and work full time. I have lost most of the pain that I had from the Crohns (like you it was like contractions) and live a full and active lift.

The illeostomy was not easy but you do get used to it.

Please post here for support and advise not matter what it is,this site was a Godsend for me, especially "wannabestressfree" (I emailed you a few times under an old name), you do not have to feel that you are alone or that people do not understand x

BoxofSnails Fri 26-Feb-16 11:35:30

Hi all, hope you don't mind me digging my thread back up. I'm hope, with a double lumen ileostomy. Oddly the imaging was misleading - it was a classic TI stricture but there was lots of damage above and below and dilatation and despite my consent form saying, and discussions saying "stoma unlikely", the unlikely happened.
Home 48 hours and having a nightmare as the bag leaks in bed extremely frequently. I was home day 8 which I know is early, but I was managing my bag solo in hospital the last few days far better than now. I've become anxious and tired and am still (appropriately, I think) weepy.

Had visitors at least alternate days in hospital but none since I got home and am as not quite managing going out yet. So today I am: reaching out to friends (don't have much family); joining the Ileostomy Association forums; and posting here. And have had an honest chat to my husband (and prayed about it, as my faith is important to me).

Really don't want to fall apart but starting to feel overwhelmed by this thing I never wanted.

Pickofthepops Fri 26-Feb-16 11:44:29

I have been thinking of you and wondering how you got on. So sorry to hear you have had a grotty outcome and suffering with leaks. Totally understand why you refers so low. I have nothing useful to add but just wanted to say all the best and am sure with the reaching out and ileostomy group am sure you'll get some practical and useful help. And someone more clued up will be along soon on here. You've done amazingly well and been so strong.

gobbin Fri 26-Feb-16 19:48:24

Box have you got an ileostomy nurse coming out to you? I had one visit three times in all once home and the nurses were at the end of a phone (or voicemail with call back within a day) after that.

If your bag is leaking because it's overfull you can get bigger bags until it settles down (in hosp mine was connected to a 2l collection bag at one point so I could get some sleep!).

Once it had settled I set an alarm overnight every three hours and emptied whether it needed it or not (generally did, it was always high output). Not ideal, but I got used to it and went back to work full time on six hrs sleep a night with a bagbreak in the middle smile

My consumption of tea in the evenings had to take a hit unfortunately - twas the one thing the bag didn't like overnight. You'll find your own rhythm eventually, it's early days. In a few weeks you'll look back and see how far you've come.

gobbin Fri 26-Feb-16 19:50:41

And there's loads of baggies/ex-baggies on here - just ask if you've got a Q.
Keep going, stay strong, you're through the worst bit flowers

gobbin Fri 26-Feb-16 19:55:52

Just a thought...I was given elastic sticky bands to hold the bag down round it's edge which really helped stop leaks.

BoxofSnails Sat 27-Feb-16 11:01:49

gobbin if you don't mind can I just explain what I'm using and what I think the issues are? Stoma nurse is here on Tuesday. I have 6 washers and Base plates left and I am getting through bags at 6-10 a day. All I can think of is to ring the ward? The stoma nurses let my DH collect another 10 yesterday - unless a miracle occurs I will not make it to Monday morning.

It doesn't leak thru being overfull, at the moment the chance would be a fine thing! It leaks, I think, because my body shape is changing post op and the seal between the skin-washer-base plate gives. Added to now having raw, painful skin with the top layer pretty much burned off - this is impossible to get dry because it of the nature of such angry skin, I guess. It's all around the bottom 1/3 to 1/2. The leaks are in different places but often the side I'm lying towards in bed. I've propped myself to stop fully side sleeping - not much better. So tired and so unable to cope. If they wanted to re admit me I'd probably let them, if only because I feel so defeated and tired. I presented effectively with CFS. Without my DH, by now, I'd be sleeping in a binbag.

Sorry for the self absorbed pity party - I normally am quite emotionally well. I've just lost it with this.

BoxofSnails Sun 28-Feb-16 17:55:30

If anyone's reading... I have had a much better 24 hours. The bag stuck, the pain has lessened a bit and I'm so relieved. I've got some cavilon from the hospital. I hate it but I'm doing my best to come to terms with it.

OddBoots Sun 28-Feb-16 18:08:40

I've only just seen this thread, my brother went through much the same a few years ago, he has had an internal J pouch constructed from his remaining intestine so he no longer has a bag. I remember the leaking and pain he had when he first got his bag, it did settle down after a while though - it does take some time for the swelling to reduce and the swelling makes it harder for the bag to fit.

The colopast website can have some useful advice.

gobbin Tue 01-Mar-16 20:30:52

Hi again box, glad you've had a better day over the weekend.
I didn't have the base plate plus washer, mine just stuck straight to the skin.

If your skin is red burnt from bag contents please don't be afraid of ringing the stoma nurses again to get them out to see it - you may need more support or a different type of bag, there are loads out there.

Don't think 'this is as good as it gets', there may be a better bag system for you. Keep in touch with your nurses and don't be afraid to ask 'how long before we change the type of bag, do you think?'

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