# My surgery



## Marx (Aug 6, 2013)

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.


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## xSophiexx (Aug 6, 2013)

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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## Marx (Aug 6, 2013)

Yes haha, finally! Thanks so much, means a lot and I'll definetly keep you posted. How are you doing? Hope all is well?


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## valleysangel92 (Aug 6, 2013)

Good luck with everything, hope it all goes well


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## Marx (Aug 6, 2013)

Thanks Nicola!  I hope so too lol


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## Trish22 (Aug 7, 2013)

Good luck Marxx 

Trish


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## xSophiexx (Aug 7, 2013)

Yeh doing really well actually went on holiday 5 weeks post surgery and was fine!! Hope yours goes really well too!!


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## Jane_MM (Aug 7, 2013)

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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## Marx (Aug 8, 2013)

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


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## valleysangel92 (Aug 8, 2013)

Glad it went well, keep positive and keep us informed when you can. We're all here for you.


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## Trish22 (Aug 9, 2013)

*Pain still after 5 weeks*



xSophiexx said:


> 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


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## valleysangel92 (Aug 9, 2013)

Trish22 said:


> 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.


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## Christos Zavos (Aug 9, 2013)

I wish you a speedy recovery!!


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## Trish22 (Aug 9, 2013)

valleysangel92 said:


> 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.


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## valleysangel92 (Aug 9, 2013)

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.


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## Trish22 (Aug 9, 2013)

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?


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## valleysangel92 (Aug 9, 2013)

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....:voodoo: 
So i'd say no they dont realize what its like at all...


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## Marx (Aug 10, 2013)

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.


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## Marx (Aug 10, 2013)

And now just came back from my first walk, it was difficult but needed it and feel much better mentally afterwards


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## Marx (Aug 10, 2013)

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!


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## Marx (Aug 10, 2013)

Meant to say *are orally


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## Trish22 (Aug 10, 2013)

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.


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## Marx (Aug 10, 2013)

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!


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## jimcon24 (Aug 10, 2013)

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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## Jane_MM (Aug 10, 2013)

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.


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## Marx (Aug 11, 2013)

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.


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## Marx (Aug 11, 2013)

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.


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## Marx (Aug 11, 2013)

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


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## Marx (Aug 11, 2013)

Couple of corrections: *right hemicolectomy and *sigmoid colectomy... Sorry I'm just rubbish with this kind of terminology.


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## Trish22 (Aug 11, 2013)

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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## Marx (Aug 11, 2013)

Just had my catheter and drain taken out and I feel like a million bucks! I wanna jump for joy, think I'm going home tomorrow too!


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## Trish22 (Aug 11, 2013)

Wow,yeah when you start getting everything out Marx,you have one foot out the door,this happened to me. Once home start concentrating on getter better.feet up,lots of book,iPod,iPad,TV, plenty of lovely fruity drinks.x


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## Marx (Aug 11, 2013)

Thanks Trish, yup that's the plan! I just hope I can cope with this bag at home without the nurses. Even though, they don't do anything and I end up doing everything myself. They're absolutely useless!


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## jimcon24 (Aug 11, 2013)

To be honest Marx I think they will want to keep you in. I had similar surgety to you but without the bag and I was in for 8 days after the op. It took me 4 or 5 days just to fart or poo.  When the bowels been fiddled around with it goes dormant, possibly the reason you've had no bag change.  I think your doctors will want to see your appetite back and the stool flowing into the bag unhindered.  Bear in mind also that you are vulnerable to infections with your surgery and at least in hospital you are under observation and can be treated much more quickly than if you were at home.  I share your frustration with being in hospital, I myself did get quite grouchy on occasion, its annoying how simple tasks become so hard.  And consider this - how ever bad you think the hospital has been, they have carried out a surgery that hopefully benefits you greatly in the future and it has not cost you a penny.  Some of our North American friends have to suffer this awful illness and have the added worry of finacing their medical costs.  You are very lucky in that respect although you may not see it that way now.  How long until you get reversal surgery with the bag?


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## Marx (Aug 11, 2013)

Yes Jimcon, I think you may be right! I have a suspicion they'll keep me for a couple more days and also about being vulnerable to infections. My frustration levels are at peak level, I absolutely hate being dependant on people. Now I'm just doing everything myself even if it hurts until my family come over and help out. It's true I do complain a lot and should bear in mind this is all free but they do annoy me soooo much with their lack of care and understanding. I'd much rather be at home relaxed with family helping me out. My reversal is due for 6 months to a year but I absolutely hate my bag and it's got me so depressed that I'm hoping to have it reversed in around 3 months. Going to mention this when I see my surgeon at my next consultation. He's off on holiday now, he always is! But he's an amazing surgeon!


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## valleysangel92 (Aug 11, 2013)

Im sorry you dont feel like your nurses arent doing enough for you... We arent all bad though! (im a student nurse) hopefully this surgery is the start of a good period in your health. I know its frustrating being in hospital and having so little control over things but its the best place at the moment. Keep positive but dont get set on going home yet, id be really surprised if they let you home before your bowels are functioning and you can change the bags. The worst part is over though and youll soon be firmly on the road to recovery.


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## valleysangel92 (Aug 11, 2013)

Also the nausea may be partly withdrawel from the morphine, it takes a long time for it to work out of your system, i still felt sick for 3 days after they stopped it.


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## Marx (Aug 11, 2013)

Hi Nicola, no they're not all bad, previous experiences have been better for me, it's just this particular hospital. I like the student nurses, they're so friendly! Lol I have had bowel movement but yeah they won't let me go until I can change the bag myself. It's true about not getting my heart set on going home because it will just depress me when I don't. The nausea is better today than yesterday, probably just was the morphine being stopped.


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## jimcon24 (Aug 11, 2013)

Marx are you young? I just ask because you say you are off to uni.  I never got a bag and I'm glad because it should result in me missing less work. A reversal op would have been catastrophic workwise . I made a point of speaking to other bowel patients in the ward and one guy had been on a temporary bag and had gotten used to it enough that he said he could hardly be bothered with the reversal because the hassle of surgery and hospital.  He did do the reversal but I only mention it to demonstrate that he got quite used to the bag.  The great thing for you is that its temporary. Use it to your advantage at uni by getting an en-suite room etc!


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## valleysangel92 (Aug 11, 2013)

The nurses I had in hospital were lovely . Well we try our best! I never got to go out on placement last year because of crohns so im starting again this year, but generally students have a bit more time to stay and chat and less running around, especially in the first year.  Hopefully next time youll get RNs that are just as nice . I find in my hospital theres a massive difference between wards as well. 
Hopefully youll be shown what to do soon and be able to practice. You may also get support from district nurses when you first go home too. Im glad the nausea is settling


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## Marx (Aug 11, 2013)

I'm 23 Jimcon, and have missed two years worth of studies because of crohns. Yes I'm glad it's only temporary and tbh most ppl who have the bag quite like in the end but i just feel depressed at the moment and even though the hassle of another surgery and hospital stay, I think I'll get it done asap! I told my surgeon just before we went in to join me up unless it very crucial and hed said after that I was a right mess when he opened me up and had to cut so much out in different places that a bag was unavoidable. Thanks for the support and advice though, I appreciate it sooo much!


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## Marx (Aug 11, 2013)

Yes Nicola that's true, it depends on the ward and just like any profession you get good ones and bad ones. Was just my turn to get the bad ones this time I guess. I'm so sorry to hear about your placement but hopefully now you'll have a full recovery and be get on with your studies and placement. I really admire you and thanks for your support.


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## xSophiexx (Aug 11, 2013)

Marx glad to hear surgery went well sorry it didn't go to plan ie the bag but glad your on the mend. try and walk as much as possible it will really help!

Trish ill be honest i don't have any pain whatsoeverr other than when i eat food i know i shouldnt! Im eating pretty normally too i don't eat fruit and Veg as it upsets my stomach anyway but other than that back to normal. was your surgery open? you will get there trish will just take time stay in touch with your doc!

Wishing you both well and Marx i TOTALLY agree about the nurses.. i appreciate they work longoing hours and have a hard job but manners and a caring attitude don't hurt!!! some were fantastic though


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## xSophiexx (Aug 11, 2013)

Marx im 23 too. what part of England are u in


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## Marx (Aug 11, 2013)

Hiya Soph! I'm happy that you're feeling good, and yes I can't really complain Ppl have it much worse and I am on the mend. It just needs patience.  I'm in west london Soph so not extremely far from where you are


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## Marx (Aug 12, 2013)

SO! Great news, just seen the doc and he said I could go home today as long as the stoma nurse comes round and shows me how to change the bag. Can't. Friggin. Wait!


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## Trish22 (Aug 12, 2013)

Yeeeeaaaahhhhh well done Marxx, Now just rest, rest, rest,
I am feeling lots better today, apart from getting loads of bloated wind pains when I eat, other than that, think am doing ok,back on my 100mg of azathioprine as well.

Trish x


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## valleysangel92 (Aug 12, 2013)

Yay!! SO glad you're finally escaping 

Make sure you get lots of rest at home, make the most of having the time off and let people make a fuss of you! You'll feel sooooo much better and more yourself back in your own place with your own things. Here's hoping for a speedy and uneventful recovery!


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## xSophiexx (Aug 12, 2013)

Ha are you! Small world eh! Quite a lot if people from London, Essex, Kent way here!!

So glad your allowed home now!! Enjoy sleeping in your own bed! And Marx i gotta ask are you a girl or a guy?! take it easy let people look after you!


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## jimcon24 (Aug 12, 2013)

Marx, congratulations on getting home - that was fast! I'm 36 and my recovery was 5 or 6 weeks, with you being younger I bet you will be fighting fit in no time.  They probably mentioned don't lift anything heavy  for 6 weeks or so?  I was very careful with this as a guy in my ward managed to give himself a massive hernia by lifting to soon.  I hope you get to grips with the bag, I bet you won't be hating it quite as much in a few weeks!


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## Marx (Aug 13, 2013)

Yes I got home late last night and being home never felt better! I automatically feel twice as a better mentally and physically. It wasn't without some controversy though, ended up discharging my self  st Mary's hospital is the biggest joke on earth. When I had my catheter and drain in only 2 days post op I kept having to beg to help move about or bring things. Then when my catheter got messed up and wasn't working properly they kept saying dont worry it'll fix itself and I literally couldn't pee even though I was desperate. My dressings were never changed unless I complained to the doctor. It's always the junior doctors taking the blood and when they dig around your veins they apologise, make a sly joke about how you're difficult and dig at your veins again before their colleuge ur does the same thing. It takes about 4 or 5 attempts to draw blood and this happened EVERYDAY! When I asked if they could send a phlobotomist they reply with 'this is our job' until I complain to the main doctors and they send someone senior around. And with canula's? Forget about it! My arms are dead and bruised everywhere. The whole of Saturday and Sunday they didnt record my stoma output so when the nurse came yesterday she couldn't determine how I was doing. Also, my bloods from Sunday wasn't recorded so after Mondays set, they found my potassium to be low and wanted to give me saline and potassium through IV which would mean staying at least another day. This was after they said I could go, disconnected everything and ordered my medication. I was so sick and tired of the place by then that I refused and said I'd risk it and get seen by my GI consultant and GP soon anyway. They then refused to discharge me and I had to argue with countless people about going home. To cut a long story relatively short, I agreed to stay as long as the service picked up. Someone came and nearly burst my vein putting a canula in. After 3 attempts she says she'll get a 'senior member' to do it but could take hours. I was at breaking point and said I'm going home now! They got my family involved and tried to convince me but I was getting more sick just being there. I'd had lost appetite, feeling sick and mentally feeling extremely down and I'm normally a happy go lucky type guy. 

Imagine having to clash with ppl for the simplest things everyday after major surgery. I couldn't take it anymore and insisted on leaving. So they made me discharge myself without and medication or help (at least I got my stoma kit) 

Just had the best nights sleep ever and feeling great (as good as one can be in my situation). Going to contact my GP and GI today to try and get earlier appointments and take it from there. I'm so relieved to be home and I can't stress enough how much all of your support has helped me. I couldn't have done it without you guys!!!


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## Marx (Aug 13, 2013)

Lol so much for keeping it short; sorry guys


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## Marx (Aug 13, 2013)

Trish, I'm so glad you're feeling better and even though I should take this advice my self, it just needs time. You'll be back to your normal self soon, I'm sure of it! Don't covert you've been through a LOT so let your body do it's thing.


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## Marx (Aug 13, 2013)

Nicola! Thank you! Haha trust me I'll milk it as much as possible, I'm the youngest in the family and no doubt will make the most of it. I wish you a speedy recovery also! Onwards and upwards from here on in!!!


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## Marx (Aug 13, 2013)

Thanks Soph! It is a small world indeed! Lmao I'm a guy, I hope I don't come across as a girl hahah. Thanks for all your support Soph, and wishing you a speedy and lasting  revi every also!


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## Marx (Aug 13, 2013)

Yes Jimcon! I appreciate it man! Thanks. I'm no way near recovered, I'm still struggling loads but just felt good enough to want to be at home cos I'd get more help at home and feel 100x better and more relaxed. As long as I wasn't in any danger operation wise. Yeah they did say not lift anything heavy but I didn't quite listen and was lifting and moving all sorts straight away until I overheard ppl in my bay talking about this woman who over did things, her stitches came out too soon, was in intensive care for a while and ended up dying. Haven't lifted a finger since! Lmao


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## Trish22 (Aug 13, 2013)

Marx, your story, a carbon copy of exactly what happened to me,I was fed up with them collapsing my veins,because they could not take looks properly and insert cannula a, my arms are only just starting to recover after 5 weeks,my replacement fluids never came when they should of , I was crying because my pain. Relief had run out i hours before and was replenished till meds trolley came round it was a joke,I was also told I had bought all this on my self by one nurse, I could not believe the cheek of her,It just shows how bad the system has deteriorated.You must put a report in too PALS,especially now has they are asking people about there experiences,so lessons can be learnt.Good luck Marx


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## jimcon24 (Aug 13, 2013)

Marx said:


> Yeah they did say not lift anything heavy but I didn't quite listen and was lifting and moving all sorts straight away until I overheard ppl in my bay talking about this woman who over did things, her stitches came out too soon, was in intensive care for a while and ended up dying. Haven't lifted a finger since! Lmao


Seriously though, that lifting thing is important, your stitching is not even a week old.  They told me lift nothing heavier than a kettle for 6 weeks. I got a tiny bit ambitious with a half full watering can and pus started coming from the wound, so I totally calmed that down.  The guy in my ward had a terrible hernia and waited months to get it sorted, he showed me the photo of it on his phone and it was bad.

As for your hospital, I would say as you have the time, write to your MP and cc the hospital as well explaining what happened whilst it is fresh in your memory.  A decent MP will look into it.  You can probably email your MP so it should not be difficult for you  to raise the issues.


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## Marx (Aug 14, 2013)

Yes Trish, I definitely will be complaining. It's a complete joke! We're not asking for a 5 star service, just not to be treated like rubbish. The NHS just isn't what it used to be. I hope you recover quickly and have lasting remission


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## Marx (Aug 14, 2013)

Thanks Jimcon, yes in all seriousness you're right and I will be taking it easy. It seems all too easy to ruin the stitching. Also, I defo will be complaining! Even though I feel better and less angry now


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## Trish22 (Aug 14, 2013)

Yes you must Marx,that way things will get better, I have been told today I have a serious Pottasium and also an urgent Magnesium problem,I wondered why I was constantly thirsty all the time,even tho I am drinking,My GP will not prescribe Mangnesium as she said it is not licences so therefore would not prescribe,she also said my potassium had been 2.8 since leaving the hospital,and was surprised they had not given me Sanda K tablets to dissolve in water,I explained they had put it through drip day before I came out and I was told it was ok,but apparantley not.Have contacted IBD nurse back to ask whether they can supply magnesium,as I am now noticing my muscles are seizing up and I am getting pins and needles constantly,I am positive this seems the start of SBS,since I have so little small bowel left,I am quite worried about the situation,anyone else being in the Same situ.I think my problems are only just starting!!!!!!!! Trish x


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## Marx (Aug 15, 2013)

Trish how annoying! They really do seem useless. Hopefully it's just dehydration and lack of potassium on your part because you get those symptoms also. My potassium was 4.1 and they refused to let me go until they topped me up through iv and they gave me loads of saline to avoid dehydration. It's so much easier to get it through your veins. Tell your IBD nurse how worried you are.


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## Trish22 (Aug 15, 2013)

Hi Marx, had a phone call this morning,am awaiting a bed this morning, my Magnesium is dangerously low,it's depleting my Pottasiums,so have to go back in and have via IV. my Pottasium is 2.8. I have been awake all night with electric shocks through my calves and have continuous pins and needles in my hands and feet,They said lack of Magnesium can cause serious muscle spasms and problems,even epilepsy, heart attacks, so that's why hey are having me in overnight to top everything up,It's the persistent Diarrhoa that has caused it they have told me,H Ope this does not keep happening,as I now have only very little small bowel left. on Sanda-K at the moment to try and put salts back in orally.  Trish x


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## Marx (Aug 15, 2013)

that's terrible Trish I'm so sorry! It's good you're getting magnesium and potassium and I'm sure they'll hydrate you with a few bags of saline also. Try and drink sport drinks like lucozade sport it helps with the salts and energy. Also try taking Imodium to slow your bowels down cos the diarrhoea really drains you. Wishing you a swift recovery! I know it's hard but be calm and patient, once they get your levels back up you'll feel amazing!


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## jimcon24 (Aug 15, 2013)

Marx said:


> Thanks Jimcon, yes in all seriousness you're right and I will be taking it easy. It seems all too easy to ruin the stitching. Also, I defo will be complaining! Even though I feel better and less angry now


Hi Marx,

Good luck with everything.  We've had very similar surgeries a couple of months apart albeit you will be on the bag temporarily.  After your reversal I'd be very interested to know how you get on.  The shorter bowel has undoubtedly changed my movements, it would be good to compate notes in the future! My movements are so changeable from one day to the next and thats been 7 weeks.  I'd like to add you as a friend so I could contact you in a few months.


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## Marx (Aug 16, 2013)

Thanks Jimcon, I wish you all the best also. I'm sure we'll both be alright.  definitely mate, we'll keep in contact and compare and contrast. Yeah add me, and if I have any questions or anything I'll hit you up.


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## Trish22 (Aug 16, 2013)

Marx , am outof hospita this lunchtime, from 2pm yesterday aftnoon till 1.15 this morning early hours,I had to sit inthe most uncomfy chair with an IV of Magnesium, because no beds available!!! No kidding, at at 11pm last nigh I asked nurse for a pillow to sit on as my backside was so uncomfortable from constant Diarrhoa and losing quite a bit of weight from surgery,have no sort of meat at the rear end aT present,well there reply was " sorry no spare pillows"can't help you, did not believe this for one minute, I was fuming.Anyhow got me a bed at 1.30 am this morning.Looks like they think I may not be able to retain these salts/minerals,and that's may have to keep going in and having it done by IV. I HOpe to God not, that's all I can say.they said supplements will be no use as they make you have D even more.So going to give me Loperamide to try till he can try and secure funds for a new drug that's on the market that halts going  to the toilet too much, he said it brilliant but expensive, and thinks that it would be perfect for me.cant think of name but will let you know.


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## jimcon24 (Aug 16, 2013)

I friend requested you but my friend list is empty, perhaps I did it wrong. I shall try again.


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## valleysangel92 (Aug 16, 2013)

Marx how are you feeling now? Sorry you had such a bad experience with the hospital! Self discharging can be very stressful but is sometimes the only option that will keep us sane.. Its such a pity you had to experience that.. I really hope your next experience is a lot more positive.. Out of interest, which hospital were you in?


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## Marx (Aug 17, 2013)

Trish that's awful! I can't believe how bad they've become. I was told the same thing when I asked for an extra pillow haha. But the main thing is you were topped up, hopefully that should make you feel better. I'm also on loperamide. I thought having surgery would mean taking less medication but I seem to be taking a lot more post op lol albeit short/medium term hopefully! How are you feeling now?


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## Marx (Aug 17, 2013)

Jim, I just saw it now and accepted! Thanks for that.


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## Marx (Aug 17, 2013)

Nicola, tbh I can't complain at all. Obviously I've got the odd problem here and there and still recovering but I'm happy. How are you? Yeah you're soo right about discharging being stressful but I literally had to for my own sanity like you say. I felt much better for it. I was st Mary's hospital. My surgeon was AMAZING! But the staff there are beyond a joke.


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## valleysangel92 (Aug 23, 2013)

Marx said:


> Nicola, tbh I can't complain at all. Obviously I've got the odd problem here and there and still recovering but I'm happy. How are you? Yeah you're soo right about discharging being stressful but I literally had to for my own sanity like you say. I felt much better for it. I was st Mary's hospital. My surgeon was AMAZING! But the staff there are beyond a joke.


I'm glad you're getting there  and that you're pleased with your surgeon. Sorry for the delay in replying, I've had a bit of a stressful week. I wasn't doing too bad but have had awful joint pain the past couple of weeks, much worse than normal. How are you doing with things like bathing, eating and mobility now? All good i hope?


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## Marx (Aug 23, 2013)

No it's okay  that's too bad, why the joint pains? Are you on infliximab? How are you feeling now? I'm doing good thanks! I shower ok, my eating is improving day by day, just need to hydrate more and then hopefully start putting some weight on. I went out today to the park, walked around then hit then did some window shopping haha it felt good!


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## valleysangel92 (Aug 23, 2013)

I dont know why I'm getting joint pain, I saw a GP and they basically said it was "normal aches and pains" .. I can barely walk sometimes! My GI wants me to wait and see my endocrinologist in a few months. I'm not on any crohns meds at the moment, the inflammation in the section of bowel I had removed was not typical for crohns so my surgeon and GI have asked for a second opinion from a doctor in cheltenham to see how big the chance of recurrence is and what meds I might need, in the mean time I'm not allowed back to uni for at least another year.:stinks:Been feeling a bit rough the last few days too 

Hydration is really important in crohns especially after an operation, so yes make sure you are getting enough  when you start having a better appetite your weight will improve steadily. At the hospital on Monday I weighed at 8st 6 less than a year ago i was barely 7st! :dusty:I'm glad you've managed to get around a bit  it can make you feel so much more human and is a big mental boost too .


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## Mimzim (Aug 23, 2013)

Marx, I hope you are better soon.  I wish I could speak from experience regarding Crohn's, but I am just now looking at having my first surgery after 8 years of IBD.  It's so nice to know this forum is here!


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## Marx (Aug 24, 2013)

Nicola that's awful, I'm so sorry. I don't know about you but I find GP's are useless better to see your GI or go A&E (I know it's a hassle). Why aren't you allowed back to uni this year? 

Yeah I need to get my hydration game up, and that's encouraging about the weight. I can't to pile on the pounds and then hit gym again. Yeah I swear it felt sooooo good being out and about, both mentally and physically. It improves confidence and also takes your mind of off every ting.


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## Marx (Aug 24, 2013)

Thanks Mimzim. Better days ahead for both us hopefully! 8 years without surgery is amazing tbh, well done! I know surgery sounds soooo daunting but it really isn't worth dreading that much. It's just the recovery which is a bit difficult at times but you just got to keep thinking about the bigger picture. 

I agree, this forum is amazing. It's helped me so much with information and advice. I hope it goes well for you and keep in touch, let me know how you're going.


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## valleysangel92 (Aug 24, 2013)

Some of my GPs are actually pretty good, but you dont always get to choose who you're going to see, so i can end up with someone who doesnt know me and my history and so they sort of just guess. I saw my GI monday and he wants me to wait for the endocrinologists. 
I cant go back to uni because my condition isnt yet controlled. They arent sure what to do next and it might take six months to find out, so its a waiting game and occupational health dont like that. They also dont like the joint issues or rapid heartbeat. Plus, immunosuppressants would interfere with my placements.. I would only be allowed into some departments and there would be some patients i wouldnt be allowed to go near. That would really affect my experience and could even cause problems qualifying. So I might have to look into a different career. 

I was so suprised id put on so much already . Youll be back to excercising before you know it. Im so glad you're feeling so much better  .


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## Marx (Aug 24, 2013)

So sorry to hear that Nicola. I missed this year of uni as well and hoping to restart next month. I know it's easy to say but patience is Key word. Time changes everything and we always have to remind ourselves that health is more important than anything else. What good is money, education, or friends when u can't enjoy them without health. Hope things get sorted for you sharpish. Yeah with each passing day, I feel better and better. Although it does help that I've been treating myself as well and buying stuff I want and using the excuse I've just had an operation haha.


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## valleysangel92 (Aug 24, 2013)

Ive missed three years in a row now.. I should be starting my final year but ive only done a few weeks of my first then left.. My university can no longer hold my place for me so id have to reapply which id need to do by christmas but I might not know by then about my medication.. Pateince is key i know but after three years and working so hard in school and college its not so easy to be patient now. 


An operation is a brilliant excuse to treat yourself, i just did the exact same thing .


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## Marx (Aug 24, 2013)

WOW! I totally understand, thats tough. It seems like you're handling it so well though and I admire you for that. I don't know what to say except i'll be praying for you and if you ever wanna talk or anything, just hit me up. I've always been a closed person but recently I've found talking things over helps loads, especially with people who understand what you're going through. It will get better though! It definitely will, I know its hard to see but everything happens for a reason.

Haha it's great and i'm not done buying stuff although Im soon going to dread checking my bank balance  I've just been spending and not checking how much thus far lol


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## valleysangel92 (Aug 24, 2013)

Thankyou! I am doing my best. Talking definitly does help, especially here where everyone understands and you can just have a good moan. I am contemplating doing something else, even just for a few years.. I have student debts from last year because i had to pay a full terms rent so need to get that paid off. I might even go back to college and do childcare so i have a fall back.. Ive wanted to be a childrens nurse for as long as i can remember but if its not possible then theres no point putting myself through all this every year. If i can do it though, i will. 

Haha my bank account looks so sorry for itself. But im using the excuse that its ok because ill be getting my flat deposit back from uni .


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## Mimzim (Aug 24, 2013)

Nicola, I know you're bummed about your career.  I hadn't thought about immunosuppressants and a health career.  I hope you're not too discouraged.  Are you thinking of other pathways?

Regarding your joint problems, my GI said mine is normal with Crohn's.  I used to think it was running and I was getting older, but he said Crohn's is systemic and causes multiple problems in my body, joint problems and psoriasis common.  I don't have psoriasis, but do have Rosacea and now hypothyroid.  He hasn't confirmed my thyroid is part of that, but that caused me to have heart palpitations that I no longer have, since my thyroid levels are now normal.  It's all interesting and I like trying to figure out connections, but I wish it weren't for me.  !  Hope that helps!

Donna


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## Mimzim (Aug 24, 2013)

Marx, completely agree with the shopping!  My husband said what do you want to do for your birthday (in September).  I said guess I'm having surgery.  Lets go somewhere for the 3 day weekend next week!  Next, I need a shopping trip!  I just hope I have the energy and my belly cooperates!  I hope you're doing better today!

Donna


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## valleysangel92 (Aug 25, 2013)

Hi Donna, to be honest we didn't really realize for a long time, I kept saying to my consultants that I was doing nursing at uni and they kept saying go for it. I did have one or two doubts but them not saying anything and uni being willing to let me carry on this year if i was well enough reassured me. It was after I went to occupational health and phoned my lecturer that she said they would interfere with placements. 
I have thought about maybe going back to college and doing childcare (currently have qualifications in health studies) so that I can work in schools or nurseries, there are courses you can do from home that are free for my age group as long as you have employment or volunteer work in a school. 


I originally got told it was maybe the crohns, but they then said I would only get the joint pain when flaring not all the time. There are plenty of people here that get it when not flaring. I get a rapid heart beat that scares everyone except me, I've had lots of ECGs and bloods and its always normal, so the only theories they have is that either the calcium is causing it or its normal. Being interesting in the medical world isnt always so fun is it, all my doctors tell me how fascinating I am...


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## Mimzim (Aug 25, 2013)

Nicola, I find it all interesting too!  Come to think of it I have had joint pain for a couple of years now, but related it to excercise.  I wasn't noticeably flaring, but obviously was since I have a surprise stricture that didn't happen overnight. The rapid heartbeat would be scary to me too!  When my palipitations began, I quit running and have not started again. I'm thinking of practicing more yoga for meditative reasons.  Maybe that will help?


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## valleysangel92 (Aug 25, 2013)

I've had joint pains since I was 12 (im 20 now), that was the whole reason I went to the doctors in the start, and then got diagnosed with coeliac and everything spiraled from there really. I had pain in my stomach for a few years before being diagnosed, but no where near as long as I've had joint issues. My heart doesn't really worry me too much, but it always scares the nurses taking it, its been as high as 150, the nurses couldnt believe what they were seeing! I'd walked into A&E with a bad leg and then got wheeled to Majors with possible early stage sepsis, my heart didnt even feel fast to me though. 

Yoga may help you, its meant to be really good for stress, which can have huge affects on crohns, so sounds like a good idea .


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## Mimzim (Aug 25, 2013)

That heart rate would scare me too!  I am sure it's frustrating for you not knowing what you have!  Has it helped being a part of this community?  Are you able to take things and ask this or that of your doctors and has it helped?  What diet are you on?  I'm doing the low-residue diet, because of the stricture.  I have no terrible pain, which is good.


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## valleysangel92 (Aug 25, 2013)

The problem is that I'm so used to it now that its almost normal to me, so if it gets that high again I'm not even sure I'd realize. This community has been amazing! Everyone is very friendly, full of knowledge and very sympathetic. Its good to have somewhere that you can just let everything out, you can have a good grumble and everyone understands. My family and my boyfriend are very supportive and understanding but it can be hard to talk to them about some things, they all have a lot of other stuff to deal with (other family members are ill too and mum and dad work) so its good to have another source of support. It does depend what doctor I see, but generally my doctors are pretty good at taking suggestions, especially one of my GPs who has really taken care of me, she nags my consultants no end haha.

I havent really changed my diet that much since being diagnosed, I was careful with anything that was high in fibre, but most things were already out of my diet since I was already gluten free.


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## Marx (Aug 26, 2013)

Nicola, I totally agree, I think you should do it if you can cos it will take your mind off things and also stop you from being bored. When I was off this year, I was ripping my hair out with boredom but at the same time wasn't fit enough to do anything that needs commitment. I'm sorry things aren't great atm but I'm sure they'll pick up.


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## Marx (Aug 26, 2013)

Haha Mimzim! Trust me, it feels good and you don't even feel guilty afterwards. Now I truly understand the term retail therapy! Hopefully you'll be we'll enough to enjoy it. Have fun!


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## valleysangel92 (Aug 26, 2013)

Yeah I've spent the past two years being very bored. But this past year I was too ill to even think about working. I will give it more thought in a week or two since I know I need to recover more first, working with kids is always hard work haha. I think it will be at least two years before id be able to go back to uni if at all. How are you doing now?


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## valleysangel92 (Sep 10, 2013)

Hey Marx,  just wondering how you're getting on now?


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