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08-06-2013, 01:28 PM   #1
Marx
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My surgery

Hi Guys,

It's about 12 hours before I go to the hospital for my ileocecectomy. My feelings are very mixed right now, excited, nervous, anxious, eager. The fact that I'm getting on/off pain is motivating me even more.

I'll try and keep a log of how it goes on here just so I can share my experience.
08-06-2013, 02:15 PM   #2
xSophiexx
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Oh Marx FINALLY!!! I hope all goes well for you and you have a super speedy recovery. Keep me updated!! Good luck!!!
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xSophiexx
Diagnosed CD May 2012
Ileum and Jejunum

Ileocaecal Resection 12th June 2013

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Infliximab
08-06-2013, 02:36 PM   #3
Marx
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Yes haha, finally! Thanks so much, means a lot and I'll definetly keep you posted. How are you doing? Hope all is well?
08-06-2013, 03:40 PM   #4
valleysangel92
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Good luck with everything, hope it all goes well
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coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
08-06-2013, 04:58 PM   #5
Marx
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Thanks Nicola! I hope so too lol
08-07-2013, 02:13 PM   #6
Trish22
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Good luck Marxx

Trish
08-07-2013, 04:29 PM   #7
xSophiexx
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Yeh doing really well actually went on holiday 5 weeks post surgery and was fine!! Hope yours goes really well too!!
08-07-2013, 06:04 PM   #8
Jane_MM
 
Join Date: May 2013
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Hi Marx,
Hope the surgery went well and that you have a super quick recovery! Let us know how you're doing when you're able to get back on here,
Jane
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Crohn's since 2000
Currently taking Pentasa (2g twice a day), Azathioprine (100mg), Calcium/D3 tablets, Fortijuce energy/nutrition drinks.
Resection of terminal ileum booked for 26th Sept 2013 - 40cm to be removed including 3 strictures.
08-08-2013, 02:44 PM   #9
Marx
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Thanks everyone! It means a lot. The surgery went well but woke up with a bag , and I'm sill all drugged up so can really type well. I'll write more once I can
08-08-2013, 02:52 PM   #10
valleysangel92
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Glad it went well, keep positive and keep us informed when you can. We're all here for you.
08-09-2013, 04:07 AM   #11
Trish22
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Yeh doing really well actually went on holiday 5 weeks post surgery and was fine!! Hope yours goes really well too!!
Hi Sophie,could you tell me please,I am coming into my 5th week and still having a lot of gut pain when I walk,although it is getting a little easier to lie in bed,did you have the same,and how is your eating now,are you still on bland food or are you eating bits of everything,I have managed to eat some breakfast this morning,although things are still not tasting right at the moment for me.
Thanks

Trish x
08-09-2013, 04:18 AM   #12
valleysangel92
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Hi Sophie,could you tell me please,I am coming into my 5th week and still having a lot of gut pain when I walk,although it is getting a little easier to lie in bed,did you have the same,and how is your eating now,are you still on bland food or are you eating bits of everything,I have managed to eat some breakfast this morning,although things are still not tasting right at the moment for me.
Thanks

Trish x
Hi Trish, I'm on week 6 post surgery and I still get pain when I'm walking around too, I think some people just heal faster than others do. When do you have your follow up appointment? As for diet I'm eating most things but being careful with fruit and veg, just keeping it to small amounts and not drinking fizzy drinks.
08-09-2013, 04:46 AM   #13
Christos Zavos
 
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I wish you a speedy recovery!!
08-09-2013, 09:45 AM   #14
Trish22
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Hi Trish, I'm on week 6 post surgery and I still get pain when I'm walking around too, I think some people just heal faster than others do. When do you have your follow up appointment? As for diet I'm eating most things but being careful with fruit and veg, just keeping it to small amounts and not drinking fizzy drinks.
Thanks valleys angel,I have managed to go the shops with my husband today,got home and feel liked I have climbed Everest,and he has driven to shops,all I did was walk round.!,I have seen my IBD Nurse,when I got really upset the other day,has I was so down,cannot understand it,coming over me in waves,like a deep depression,she said it was normal,I have had my appt to see surgeon follow up on August 30th,so still a couple of weeks away,I hope by this time,I feel a lot better.The pains I get when I am walking about feel unreal,it feels where they have probably stitched me up inside,also I am always full of wind,and sometimes it's so hard to pass, I think this is where most of my discomfort is coming from,I neither have fizzy drinks,and watching every morsel I eat,am still finding bread very hard to digest,and most times can only manage three or four mouthfuls mashed up,started back up to 100mg of azathioprine last night,made me feel very nauseous.
08-09-2013, 12:23 PM   #15
valleysangel92
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It is quite normal for you too feel tireder after surgery but that should be starting to ease by now if you've been building up your activity. Its quite normal to feel low after operations, its a massive thing to go through both physically and mentally, hopefully as you recover and you start to feel healthier your mood will improve too.

I had a GP appointment today and she said that its quite common to get pain as the nerves and muscles that are cut during surgery start to reconnect and heal. However if the pain is as severe as when you first had surgery, or if you start vomiting or develop a fever, you need to go and get checked out as a precaution.

Build up what your eating slowly, if you have gas/bloating then try peppermint oil capsules, you can get them from any good pharmacy and they can really help pass wind.
08-09-2013, 02:07 PM   #16
Trish22
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Thanks Valley,I have just drank some peppermint tea,I had some peppermint capsules last week,but they made me feel a bit rough during the night,so I left them off,but they are what I would normally use,I now only have 1.4metre of small bowel left,and am finding food going through me very quick,although I still have my large bowel,that as no crohns,just my small bowel.i am trying to do a fair bit of walking about during the day,but the wind gets really bad when I have to sit down.People who don't suffer this disease,would never believe the pain and misery we go through would they?
08-09-2013, 02:35 PM   #17
valleysangel92
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I hope that helps you somewhat, its unbelievable how painful a simple bit of gas can be isnt it *hugs*. Hopefully your bowels will settle down soon and you'll be a little less frequent. Make sure you're drinking lots . It is difficult to keep mobile with this pain, when I was in hospital the physios were driving me crazy, seemed to think it was as easy as pie, got me lying on my scars to get up the day after surgery! I got her back by almost throwing up on her....
So i'd say no they dont realize what its like at all...
08-10-2013, 01:21 AM   #18
Marx
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Thank you everyone for your support, it truly means a lot. It's 4 in hospital now and I'm still feeling very down. Weirdly enough my best two days have been op day and a day after. Saw my surgeon yesterday and he explained they did a lot more than planned as it was a total mess. So I head an illececectomy, right hemocolectomy and a sigmoid resection as well. All in all about 100cm gone and I now have a double barrelled bag albeit temporary. Woke this morning with quite a bit more pain and but at least I started eating last night. Hoping it'll get better and better, meant to go for a walk today.
08-10-2013, 06:54 AM   #19
Marx
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And now just came back from my first walk, it was difficult but needed it and feel much better mentally afterwards
08-10-2013, 08:32 AM   #20
Marx
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I've been taken off all iv and all my meds are not orally. Taking paracetamol tramadol anti sickness and pred. Also I've come of the morphine and now feel absolouty sick and a bit of a temperature. Weekend doctor has gone so nobody can make decisions. This place is a joke!
08-10-2013, 08:33 AM   #21
Marx
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Meant to say *are orally
08-10-2013, 05:40 PM   #22
Trish22
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I had the same problem Max they took my IV fluid down too early,felt really sick,got dehydrated,through sickness,then had to go back on fluids,the hospital I was in ,I am sure staff did not converse with each other,and also I was having to wait to long for top up drugs,having my fluids changed etc,I was actually on fluids,till the day before I came out.But congratulations on achieving your walk and to eating,I did not feel that hungry,first few days cos I felt so sick,but am sure you will be out before you know it.
08-10-2013, 05:45 PM   #23
Marx
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Trish I'm so sorry you had to go through that. Especially after an op you just feel so helpless and need help with everyhing. I can't totally relate. The staff here are a complete joke and are raising my stress levels very high. I can't wait to go home I'm hoping by Monday, latest Tuesday!
08-10-2013, 06:18 PM   #24
jimcon24
 
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Hi Marx, I hope things go well for you. Like you I recently had a sigmoid colectomy and a right hemicolectomy. I did not need to have a temporary bag though. Its been 6 weeks and I would say I have recovered although it has literally taken all 6 of those weeks! Its early days for you. My advice is don't over do it and listen to your body, it does take time. Can I ask what an illececectomy is?? I have never even heard of it.
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April 2010 Diagnosed with Crohn's Disease
June 2013 Right Hemicolectomy
June 2013 Sigmoid Colectomy

Meds: Azathioprine 150mg, (September 2013 -)
08-10-2013, 09:48 PM   #25
Jane_MM
 
Join Date: May 2013
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Hi Marx, I'm sorry they had to take out more than you were expecting. Hope the walking and eating continue to improve things. Hopefully your body will adjust to the medication change and you'll feel better today too. I'm worried about lack of doctors at the weekend after my op too. Anyway, fingers crossed you'll be home very soon.
08-11-2013, 12:49 AM   #26
Marx
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Jimcon, thanks for your support. Yes, my body is doing well I'd say but I still need loads more time of recovery but at home because staying in this hospital is just frustrating me so much my crohns will probably come back. Lol. I intend to recover fully though as I don't start uni until the end of September which should be enough time. An ileocecectomy is when they also remove part of your terminal ileum, some colon and your ileocecal valve. My appendix is gone too.
08-11-2013, 12:55 AM   #27
Marx
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Hey Jane, thank you! I know even the surgeons were surprised but they said how I really needed this op which is a good thing I guess as my strictures were getting worse. Now when I eat, I have no pain, I just feel sick at worst. Tbh I hate having a bag but thank God it's only temporary. Even though I love my surgeon he's amazing but I never wanna stay at this hospital again! The guy next to me gets seen 20 times before I get seen once by the nurses and the remaining doctors are useless especially on weekends. One thing I've learnt in hospital: the more bullish and rude you are, the better the staff treat you. If you're nice to them like me, they'll treat you like shit. I have no sympathy for nurses anymore. I'm going to try and push to go home today but the only problem is I don't know how to change my bag yet and the stoma nurse comes back tomorrow.
08-11-2013, 01:23 AM   #28
Marx
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It's day 5 in hospital now after my ileocecectomy, righ heliocectomy and sigmoid resection. I feel much better this morning, there's pain but less of it and of course feeling sick is never great but I'm sure that'll pass as long as I don't tthrow up which is my main worry. I've been off all IV meds for a day now and it's takes a bit to adjust body wise but I got there in the end. My advice to anyone is just take it easy and never force anything but at the same time try and push yourself to do little things like getting out of bed a couple of times a day and going for a walk. It really helps, both physically and mentally!

I hope to be out by tomorrow latest, might even push for today, we'll see when I see the doctor. I'll keep you guys posted
08-11-2013, 01:25 AM   #29
Marx
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Couple of corrections: *right hemicolectomy and *sigmoid colectomy... Sorry I'm just rubbish with this kind of terminology.
08-11-2013, 02:47 AM   #30
Trish22
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Let us know if you get out Marx,you will feel so much better when your home in your own bed.x
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