Hi All,

I'm new to the forum, and forum's in general so you might have to bear with me a bit!

I have also just had a right hemicolectomy (aged 25) and it all came as a bit of a shock to me. I was diagnosed with Ulcertaive Colitis about 6 years ago and had since had only 2 major flare ups since then. However last November I started to get really painful cramps on the lower right handside of my body which gradually increased in severity and was followed with extreme vomiting and stomach gurgling.

When I first went to see my GP (in Jan) he was convinced that it was excess stomach acid, then on the second visit was convinced that it was my colitis flaring up despite my protests that none of the symptoms were the same as any previous flare ups, for example my normal toilet habits of 5 - 7 times a day had been cut down to once at best and almost everything that I was eating I was vomiting up within an hour.

For a long time I believed that all the symptoms were in my head and that the worry and the stress was causing the vomiting rather than an actually problem. Eventually I went to the colitis clinic at my local hospital who arranged for a CT Scan. After a week or so I was called back and informed that I didn't have colitis but crohns disease and that part of my small and large bowel were damaged beyond repair and that the only option was surgery to remove to diseased area, not only was the area badly diseased but part of the bowel had fused to my bladder and falopian tubes causing further pain and complications.

3 and a half weeks ago I had the surgery, which unfortunately couldn't be performed via keyhole surgery and had to be done via a large cut across my lower abdomen. Thankfully the surgeons were able to re attach the bowel so I haven't needed a stoma but now I'm unsure how long I should rest and let myself heal before going back to everyday life and work.

The whole ordeal has taken me a bit by surprise and has knocked me a little for six as I never really thought I'd have such major surgery so early in my life. Its been a total of three and a half weeks since my surgery. My appetite is good and I don't feel too tired most of the time. The scar is healing well but is still very uncomfortable when I walk or move around too much and when I do try to do something 'normal' such as a small amount of groccery shopping I'm exhausted after. I'm still staying at my parents house as I live alone and although I'm itching to get back to my normal life I'm scared of making anything worse or pushing myself too hard.

For people who have had this surgery before how long did you rest for and how was it first going back to work, my concern is that its takes alot out of me to get up and get dressed in my own time on a day never mind having to get up at 6am and get dressed and into work for 8am when I've not done it for so long and still fairly delicate!

If anyone is able to give me some guidence it would be much appreciated,

Thanks everyone

Bex x x x

Hi Bex

This is my first post on the website so I’m new to all this, but old hat at Crohn's! about 18 years now. My 1st op was a right hemicolectomy but luckily it hadn’t attached itself to anything else, unlike yours, since then I have had another 2 small bowel resections, the latest one at the end of Feb this year Due to the previous op's they had to go in through my old 6 inch scar down my middle so i know the discomfort you are in, and getting out of bed can be really difficult! i went back to work after 5 weeks, it was really the boredom that made up my mind, the 1st week back i did 9 till 2 or 3 depending on how i felt, and believe me i couldn’t believe how tired i was the 1st few days, but everybody is different i have been lucky and got over the op very quickly, if your body is tired, sore you need to listen to it and take it easy, don’t rush things, i'm now at 8 weeks and stooping down and stretching up still smarts a bit! One bit of hope is that after my 2nd op i was about your age and i spent 10 years practically symptom free - i really hope this will be the same for you. Unfortunately i am not so lucky this time and still have a lot of symptoms and have been put on the Modulen liquid diet so no food for 8 weeks - but its making me feel better.


I'm really glad that i found this site and there is some really helpfull advice and everyone seems really friendly, so i think this may be my first post of many!

I hope your recovery goes well and once again listen to what your body tells you! and dont be impatient

Take care Vicky

Hi Vicky,

I'll no doubt end up asking you loads of questions about Crohns's as your a self confessed 'old hat'. Sorry to hear that you've had to have more than one surgery, but 5 weeks seems like a failry quick recovery time. I know what you mean about the tiredness, I suffer from quite bad anemia so am fairly used to being tired but nothing compared to when I first came round from the surgery, fortunatley (or unfortunatley depending on how you look at) I had to have a blood tranfusion before I left which perked me right up!

I also got stuck in bed one night when I first got out of hospital as I'd forgotten how much I relied on the electric bed adjuster so got straight into bed and couldn't get out, had to do alot of rolling around etc!

I think I forgot how recent the surgery was as all the days roll into one and it seems like it was much longer ago than it actually was.

I'm off for my follow up appointment tomorrow so we'll see how that goes and take it from there.

I hope your recovery goes well and that everything settles down for you soon, I'll try not to be so impatient and rest up!

Take care

Bex x

Hi Bex

Feel free to ask anything even if you think its daft, because most of us will have asked the same questions at some time!! Anyway you were lucky an electic bed! i had to make do with the nurses hauling me out of bed and had a very bad experience with one of them who literally yanked me out of bed and i screamed the ward down - at least it made the nice nurses come running and help me, i can safely say after that she steered well clear of me!!

Take it easy

Vicky

It was 8 weeks before I was fit for work after 2 resections and 4 strictoplastys, I work in an office, and went back part time for the first week.  But even then it was a few months before I could say that I'd gotten over the op.  Don't expect too much too soon, and take all the help your parents are offering.  I too remember finding myself stuck at times, it was ok to roll off the bed, but I kept getting stuck in the recliner chair!!!!

I can only echo what the others have said. Don't forget you have to re-build the strength you've lost through all those weeks of being ill before the surgery too! I'm a nurse and we advice 6 weeks as the average time before resuming 'normal' activities after abdo surgery..but it is different for everyone and the best thing you can do is listen to your body. My 1st surgery was a right hemi-colectomy too, I was 15, and it took me weeks to recover properly. I'm now waiting for a small bowel resection and hoping my recovery time will be much quicker...I've been off work for months and am desperate to get back!

I hope you start to feel stronger soon, but please do take it slowly!

Hi all,
Just a quick question for you all, has anyone been prescribed Selenase ? As I understand it the reason for it is for the body to hold on to the "goodness" of any food I eat for longer. Because of the nature of the disease the frquent toilet visits takes away the "goodness" before the body has a chance to absorb it.
Let me know if any of you have had experience of it.
Hope you are all well,
Delilah

Rebecca, welcome to the forum (I don't think I've said hi yet). It seems that late Crohn's diagnoses are the norm with it being a fairly rare condition but it sounds like you've had a real nasty time with things recently. I'll echo what everyone else has said: take it slow, accept help, give yourself a chance to recover properly before you push yourself too much. I know it's frustrating but it's the best and fastest way to recover fully.

Delilah, sorry I haven't come across Selenase

Nigel

Hi Everyone,

Thanks for all your lovely responses, I think everyone is right I just need to give it time, did a little bit more yesterday prepping for my mums birthday dinner and it knackered me out and made me feel a bit sicky again. Defo need to just relax and give it time, especially as you said Cassie to rebuild the energy I lost being sick before the operation, I seem to have put all that illness part to the back of my mind for now!

Had my first check up with the doctors yesterday and everything seems to have gone alright with the surgery, the bowel either sides of the join are apparently healthy and have now been prescribed azaithioprine for long term use. They do however think that I have developed endometriosis but thats something totally different for me to worry about!

I'm mainly happy now because I can eat and not be sick so I'll just have to take each day as it comes.

Hope everyone else is doing well and coping well with their Crohns,

Take Care

Bex x

Hello welcome !!

Hi Everyone,

New question =

Before my surgery I lost around 3 stone in weight, I was a little over weight beforehand so have seen it as the silver lining to my cloud. Now that I'm back eating I have as you would imagine started to put on a little weight, however (and this make me sound very vain) I dont want to put weight on if I can help it because of all the pain I went through when I lost it, it will seem like a waste. I know that putting on weight is a good sign, and that it shows my body is absorbing things but because of the surgery I'm still spending a lot of time in the house recovering and not exercising.

Does anyone have any good ideas for gentle exercise so that I can start to work off some of the calories I am eating and any good recommendations for filling food that isn't too unhealthy?

Any help would be much appreciated,

Thanks

Bex x x x

Hi i had the same op bex last week, im 22 it got stuck to my bladder and other places i have been so scared being in hospital and that i have to go for a scan tomorrow to see if my bladder has healed then i can have catheter out, did you hve that too? im scared its not healed and i gotta have it in longer lol, i think its gone ok for me i feel really good and im moving im just going to take it easy but then again my op was key hole!! they have put me on steroids and azarprine did they you? its nice speaking to someone whos had the similer op thanks hope your ok.

Hi Bex
I fully understand what you are saying about weight gain. I was really happy to have lost weight - and thought at least there is a silver lining! However, when I was well I put it on again, and now I have two sets of clothes for when i'm ill and when i'm well.  After a few bouts of weight yo-yos I gave up worrying about diet and now I just eat whatever makes me feel OK. I do find that Pilates is great for strengthening and toning my body (I hate exercise in general!).  Hope you find whatever works for you.  Be happy!

Hey Bex,

Just like you i've had to have surgery at a young age, im 22 and still i cant really believe ive had it. I had never heard of crohn's disease or a stoma, i felt so ignorant. I lost roughly about half my body weight in the space of two months. I had 2 surgeries in the space of a week about 3 months ago. The first surgery was a right hemicolectomy leaving me with a stoma. The second operation was an evacuation of haematoma as I had a blood clot from the first surgery, and the stitches in my lieum had come loose and was leaking fluid into my pelvic cavity, leaving me with a second stoma post op. I didnt even know it was Crohn's disease I was suffereing from until I was in a hospital. I always labelled it as IBS and always thought the pain would go away in a few days. I was just too stubburn for my own good and suffered with crohn's for 5 years due to mis-diagnosis.

Im now left with two stomas ((ileostomies) which are reversible) and I feel ultimately better. Ive been out of hospital now for 2 months after spending 10 weeks in there. Im recovering so fast, I couldnt walk when I was discharged and now im able to go for jogs etc. Ive managed to get back to my fighting weight almost and im doing relatively everything I used to do as a university student. I had to drop out of university due to spending so much time in hospital, and now im taking a gap year to just concentrate on my health as that really is the most important thing. Thankfully I haven't had so much as a stomach ache since the op, which is generally really weird because im not used to it, but its fantastic.

Im not letting what I have stop me from doing anything, I've been to gym, I've been on holiday and ive been to parties. I'll even admit ive had to disappear during a party to change a stoma bag because it came loose. I just wrote a new CV this morning to get full time work and im going back to my part time job at B and Q next month. I dont even let the stomas hold me back, although it was the strangest thing ever at first, you just learn to deal with it, i just have to be wary that they have a mind of their own and need quite frequently emptying when im drinking lots of fluid. Plus they will soon be reversed, I will of had my resection and i'll get on with my life and finally finish uni. I was contemplating going back to uni this sept, I just thought it would of been a bit too much in my current health situation and with possibly another two ops on the books, I could of ended up just dropping out again.

One thing that I always did think about whilst in hospital was image though. I wont lie. I was worried about the hefty 12 inch scar, the stomas on either side of the scar and body image in general and how this would effect relationships and stuff. I can remember getting really upset (I blamed the steriods at the time haha) about being discharged and how things wont be the same or how they used to be, but after a long chat with nurses and my friends and family I realised its not all that bad. I even started losing my hair, it was crazy to me. Now im just working my way back to what I used to be, doing weights and cardio and getting my body fighting fit for whatever else life wants to throw at me, it is abit hard at times though i just have to keep telling myself im not going to let it win.

Life is 10% what you're dealt and 90% how you deal with it. Always wise words.

Anyway I hope you're well.
Take care,
Johnny