Hi all, 7 days ago I had a small bowel resection, which couldn't be performed via keyhole, so they went in below my belly button. After the surgery I felt as though I was getting nowhere, I found it so hard to even stand up and my body just wasn't my own. However, after I'd tackled that first hurdle, things became much easier. Gradually, I felt more comfortable doing things and was able to do a little more each day. A week on and I'm home from hospital, can climb the stairs and have even managed to have a shower & wash my hair without help! I'm pleased with my recovery so far, and although I'm trying to do as much as I can, I'm not overdoing it. But, I'm just wondering how much activity is actually a good idea? Obviously no heavy lifting, etc. But is it ok to climb the stairs as much as I want? And to cook my own meals? Although I want to, I don't want to do too much and cause problems later on. So any advice would be great.

Also, as my muscle was cut, my stomach sort of feels like it's not my own and is sticking out. Is this normal? And how long will it last? I've actually found it really hard to straighten up and I'm wondering if this is more to do with the muscles than the bowel.

If anyone who's been through a similar experience has any input, I'd really appreciate it!

Thanks,

Nicole x

Hi Nicole.
A few years since I had the op but still remember it prety well.
You're basically doing right by staying active, just do what you feel is right. I don't think you can really break anything unless you really overdo it.
Try and straighten your body as much as possible to stop the muscles contracting. It hurts but will help in the long run and will help flatten that stomach a bit. The swelling does take a while to go so don't be too alarmed.
The pains will ease week by week but it may take 4 or 5 weeks to feel 'normalish again.
If you feel pricking pains along scar line it may just be the internal stitches jabbing. I think they are dissolvable ones and may take a month or two to dissolve.
Cut line should close and scab within 2 or 3 weeks.

Things to avoid- as you probably already know.
Laughing
Coughing
Definatey sneezing
Going to the loo- just relax and take your time
Eating too much
Avoid beans ect.wind hurts a bit as it passes through the old pipework.
Surgery isn't a miracle cure so it may be while before your bowels settle down. Mine never went back to normal but at least the pains you had before surgery should ease somewhat and you should be able to eat yourself healthy again.

If something really doesn't seem right, get hold of your gastro doc or GP. You shouldn't have any major suprises unless something is wrong.

Hope some of that helps and I'm sure others will pass on some more advice.

Dave.

Hi Dave,

Thanks for your reply, that was really helpful.

I seem to be recovering well, have had my staples removed and the swelling has gone down quite a lot....my stomach's starting to look normal again at last. I can now straighten up much easier and walk with ease, apart from feeling quite faint. But I figure that will ware off, especially when I can start to eat more. My main problem at the moment is that is still hurts a bit to go to the toilet and I keep getting cramps. But nothing I'm experiencing seems alarming and I'm sure it's all part of a natural recovery.

Nicole

Hi Nicole.
Glad you're feeling  a bit better.  Just think back 2 weeks and to how you are now. Another 2 weeks and you might be able to get straight out of a chair without having to roll out sideways.
Cramps and pains are normal as everything settles down again. It's catch 22 when you have to go to the loo. If you don't push, you don't go. If you push, those stomach muscles hurt and also push on the resection area. Time will sort that out.

I don't know exactly which part of the bowel you had removed and whether you would really want to watch it but if you type RIGHT HEMICOLECTOMY SURGERY into You Tube you will find a few videos. Check out the one by cyberwapx. Lot's of useful stuff on there.

It might make you sick but at least you'll know what they were doing while you were asleep and why it now hurts so much.
Grab a bucket, gather all your family round the computer and see who throws up first.
Good luck and remember, you never heard it from me.

Dave.

Hi, please can you help me? I am 30 years old female, have been diagnosed with crohns now for approx 3 years, have been taking pentasa and 3mg steroid tablet for about 2 years, have been to see my surgeon today after hacing mri scan etc to see where my intestine was up to, the planned operation to remove the infected part of the small intesttine cannot go ahead now because it is mostly stuck together, the surgeon saif it is mostly the whole of my small intestine...which isnt good.  

He has referred me bqack to my consultant to try me on some other meds to get the inflammation down, and then hopefully an op can be planned.  
Does anyone have an info or advice they can give me please? I am really worried and fed up with the whole crappy situation.  PS sorry to have responded to this post, but I didnt kn ow how to add my own post, if you know how to do that too please tell me!
Lindsay (-: X

Dave, believe it or not I can actually get myself up quite easily, have been able to for about a week now. So no rolling for me! lol. I am definitely going to watch my surgery on youtube....keep meaning to have a look, glad you reminded me! I'm not squeamish and am the kind of person who has to know literally everything about what I'm going through. I actually diagnosed myself with Crohn's in the first place a year and a half ago, and since then have just continued to build my knowledge. I feel much more reassured for doing so, and I have peace of mind becuase I always know what the doctors are talking about and where I stand with medication, etc. Can't imagine it being any other way!

Hi Lindsay, glad you've posted, we're all here to help! If your small intestine is 'stuck together' due to inflammation and not scar tissue, then I think a course of steroids, starting off on a high dose (maybe 60mg) would probably be the best option. Inflammation usually responds really well to steroids, but it isn't really a long term option, more of a quick fix. Which is what you sound like you need, so you can go ahead with the surgery. Have you seen your consultant yet...what have they suggested? You could also try infliximab, but I think if you're planning to have the surgery, steroids are probably best. Then after surgery, a maintenance drug, such as azathioprine....which I'll be starting next week, to keep you in remission.

It's not a great situation to be in...every Crohn's patient is different and there's no real great treatment option; either surgery and then long term medication, or medication alone with lots of side effects. But you will figure something out, you just need to be patient and see what works for you! I can't wait to actually start getting on with my life, I hope I get a decent amount of time out of this op.

Keep posting if you have any more questions....it's good to talk!

Nicole x

Hi, I had resection 4 weeks ago, 30cm of bowel removed through a 25cm cut.  I was doing really well, had staples out after a couple of weeks and was upright, moving well and bowel movements were getting better then pain set in on right side and I was admitted back into hospital.  I had a pelvic infection and spent another week in hospital and had a drain put in which I came home with (wonderful fashion accessory !) Had drain removed yesterday (ouch) and feel much better without it and being able to have a shower at last, but boy am I tired.  I am trying to do things around the house but just showering left me shattered this morning and I need to sleep for at least an hour every afternoon just to be able to stay up to 9pm in the evening.  Hopefully things wil start to improve now the infection has gone and the antibiotics get out of my system, I just wish someone could give me an injection of energy, I expect I am hoping for too much too soon.  I too hope I get something out of this op (surgeon says he got all the strictures and all the Crohns).
Good luck everyone

Hi Linney, sounds like you've had a tough time...it's been two weeks and four days since my op and I definitely feel like I'm on the mend, so I can only imagine how you felt having to go back into hospital. Glad you're back on track. I know exactly what you mean about having no energy, I'm still anaemic and feel awful as a result. Really wish they hadn't sent me home with my iron so low. I had a blood transfusion before the op, which helped a little bit, but now I'm back to square one. I'm seeing my doc about it on Friday, so hopefully she'll be able to help. I can't take iron tablets or the syrup because they upset my stomach, so I've been trying to get either iron or B12 injections for a while, but then I ended up in hospital. I'd love to be able to get my iron levels into the normal range for the first time in years and actually feel healthy for a change!! Maybe you have low iron too?

Nicole x

Thanks for reply Nicole, I hadn't thought about low iron.  I have spent so much time over the last 4 weeks on nil by mouth or low residue and multiple antibiotics that I was really putting the lack of energy down to that.  I have to see my GP for another cert for work next week so I will ask him for a blood test.  How are you bowel movements ?  I ask because after the op I went through the normal very loose, watery bm and a lot of wind, then just before I went back in hospital things were getting more solid and only once a day.  Of course the whole thing was messed up being back in and not eating but started to improve as I came out.  Changing from IV drugs to oral gave me an upset stomach but I had a barium CT on Monday this week (which should have made bm's more solid) and things are still the same.  I am having to run to the loo several times in the day and night and without wishing to be too graphic the result is very windy, smelly and bit like a baby nappy consistency.  I have been told by my surgeon to eat normally, but I have been taking things carefully.  Is this normal for this stage of the game I wonder ?

Yeah me too, I'm still on antibiotics but know that my low iron is why I'm feeling tired and rubbishy. I also found out I have low blood pressure, which has similar fainting effects to anameia, so there's nothing down for me.... lol.

Bowel movements.....well! When I first came out of hospital I had diarrhoea, which really panicked me as I was literally running to the toilet and I was still scared to go at that point. That gradually improved over the weeks, but the last couple of days have been the worst. I've been unable to go at all and have had constipation like never before. My body was trying to go, but nothing would come out, it seemed to be stuck in the rectal area, verrry painful! I couldn't stop my body from trying, even though that was probably causing more damage, and I couldn't urinate either because my body would just think I was trying to push other things out and I'd be in worse pain. Nightmare! So, I'd much rather have the diarrhoea that I had before. I took some stool softeners which didn't really help, and some senekot last night which seems to have worked, but it's still painful.

At this stage, I think our bodies are still settling down, so anything I'm experiencing isn't really alarming me...although I would have called for advice today if I still couldn't go. I think diarrhoea is totally normal and much more easy to deal with. Still not great, but I expect it to be a while yet before things start to be consistent or 'normal'. I can't let that happen again though so I think I'll be stocking up on the prunes!

Nicole x

wow Nicole you poor thing I am still spending most of my day in the loo but I admit it is better than not being able to go at all.  I guess you are right our bodies have got to get used to things.  Just to add to the mix I have been back in hospital 3 days after having the drain removed I was taken back in with chest pains.  At first ,once heart attack was ruled out, they thought it was a blood clot on my lung but lots of tests and heart scan showed I had inflamation of the lining of the heart.  Not life threatening but will take about 4 weeks to get back to normal.  No reason for it just bad luck.  So here I am back to square one, more tired than I thought possible and today for some reason very tearful.   Five weeks of battling with one thing after another feels like too much and I do feel guilty for feeling sorry for myself cos I know there are a lot of people out there with far more to complain about than me, but its a bad day !
Anyway lets hope we can both start to get back on track and enjoy normallity (whatever that is!).  enjoy the prunes.
Take care x

How are you feeling now Linney? Hopefully back on track! I'm not surprised you've been tearful, I've found the various setbacks along the way can make you feel as though you're getting nowhere, when all you want to be doing is recovering so you can get on with your life and have a bit of normality back. We're all entitled to our bad days and to feel sorry for ourselves once in a while, so relax, have a bit of a moan, and wake up the next day with it behind you.

I find myself really paranoid about every little pain I get. I keep thinking, is it the crohn's or could it be a complication from surgery...scar tissue, etc. It's hard when you don't know what's going on inside your body. I've had a few pains where I used to get them, last part of the small bowel. I'm wondering whether it's a problem or just things settling down from surgery, as that's the part they removed. Will mention it at my follow up appointment in a few weeks if i'm stilll having problems. Just really don't want another op any time soon!!!!!!! I'm done for now thank you very much.

x

Hi Nicole, haven't been up to signing on for the last week, the chest pains got worse again and I have been very breathless.  Another evening spent in A & E but I was sent home with a "rest more" and "keep taking the painkillers". Its bloody scary when you can't breath !  Anyway just to make life really interesting I picked up a stomach bug my husband had and was vomiting for 3 days, really needed that, you can imagine the pain in my chest with the constant heaving.  I ended up having to get my GP to prescribe anti sickness tablets (why do they give you tablets when you are chucking !) Good news is I haven't been sick since Tuesday, have started eating again and am beginning to have a little energy today.
I know what you mean about the paranoid about pain thing.   No one tells you what to expect, what you should worry about and what not to be too concerned about.  I have my follow up next Wednesday but to be honest this chest thing has taken over and my stomach has just been getting on with it, whichever bit hurts most wins at the moment !  As for surgery NEVER AGAIN.
Hope all goes well with the follow up, let me know its good to keep up with someone at the same stage.
x  

Hi Linney, how you doing, have you been taking it easy? I hope you're over the worst and can start getting back to normal very soon.

It's now been 6 weeks since my op and I'm feeling pretty normal, so hopefully that will continue. Have my follow up appointment in two weeks. Scar is ok, but the area around it is still a bit numb and a tiny bit swollen...can't wait for this to go back to normal but it's not bothering me and is much better than the huge bloated stomach I had permanently before the op! How is your stomach? I'm currently having iron infusions that are given via a cannula in my arm. I have another two treatments left.

I am trying my very best to live for the 'here and now' and enjoy feeling well again, but I am SO worried about the crohn's attacking again and eventually leading to a stoma. I know it may never happen, and hopefully won't, but it is something that is worrying me so much. Which is bad news, as I need to keep my worrying to a minimum and my stress levels down, as do all of us crohn's sufferers. My head keeps telling me this, but the worry is still there nagging away. Stress is what caused my major flare up in the first place, so I am very aware that if I keep worrying, it could affect my health. I might look into some kind of stress management....it could be a very useful way to keep the crohn's at bay!

xx

Hi Nicole, good to hear from you.  I have been rsting, have never felt so low in energy like this before. But over the last couple of days I have definately had a bit more go in me.  At least I don't have to have the iron infusions like you do , that must be such a bind but if it helps I suppose its worth it.  As for my scar its doing fine.  It would porbably look awful to someone else but to me its doing great compared with when I first saw it with all those staples in and so so swollen.  I have been trying to eat things that I wouldn't have eaten pre surgery, had a stir fry the other day, and the effects havent been too awful.  I still think my bowel it getting used to itself so BM's are unpredictable but not as frequent.  I too am concerned about the Crohns coming back but that may not happen and whats the point in wasting all that energy worrying about something that is out of our control, I am more worried about gettng Christmas organised (all the family coming to me - still !).  Seriously try to enjoy feeling good and be positive, I am sure disease feeds on negative vibes we produce.  Seeing surgeon on Wednesday will let you know how I get on.
Take care x

Saw surgeon last night and from his point of view all has gone well (apart from the infection etc) and he said he didn't need to see me again.  Believe me in the nicest possible way I hope I never see him again !  I am still having loose bm's but not as often so hopefully that will settle, although my GP gave me antibiotics this morning for a persistant cough and they always have a dramatic effect on my stomach so getting my bowels into some routine may take time !  The surgeon also said I should contact my GI to talk about maintaince meds before the Crohns has a chance to take hold again.  Sobering thought. Still not back at work GP signed me off for another 4 weeks, all this time off, wish I felt well enough to enjoy it !

I had a right hemicolectomy on June 13th 2001, shortly after diagnosis. I went into hospital not really knowing what to expect, thinking I would wake up, with a plaster on my tummy to cover an appendectomy sized scar, and I'd be home in a day or two. How wrong I was. I woke up the day after my op, hooked up to monitors and drips etc. with a 10 inch scar from above my belly button, down to my pubic bone! I was so shocked, I would have been sick if they hadn't emptied me out so thoroughly before the op! Never had I felt pain like it in my life, I had a drip of morphine going in to me, which didn't really numb the pain, rather it just made me unable to care about it if that makes sense? That drip was there for 9 days, 9 days I really can't remember much about!!! I couldn't even get out of my bed, and was laid on my back for 18 days after the op, I went down to just under 6 1/2 stone in weight, my lungs filled with phlegm and I needed physio to get me breathing properly again. I couldn't eat or drink anything for 3 1/2 weeks after the op, and I felt real exhaustion. About 6 weeks after the op, they let me home, in a wheelchair, but that night, was rushed back in, and I spent another 4 weeks there. After the initial pain and problems caused by the op however, and when I'd regained some energy and strength, I had a period of probably 2-3 years virtually symptom free, no pain, my energy levels had gone up and my inflammation levels down, the diarrhoea had reduced significantly, and I felt 'normal' like my friends. The surgeon told me that although they had removed about 4 foot of bowel, they couldn't remove all the infected parts, and so I should still expect to have some symptoms, but it might not ever affect me like it did. But when I had recovered, I was more than happy with the result, yes, it could have gone better, but, I was/am so grateful for the period of wellness they gave me. I suppose the point I'm trying to make is, even though it may take a while to recover, and I won't lie, its a truly harrowing experience full of disgusting, agonising twists and turns, it does get better, and easier, and hopefully you will find this too. Just hang in there, keep your chin up, and hard as it may be, DON'T LET IT BEAT YOU DOWN. Remember: You have Crohn's, you have no choice in that. But you do have a choice over whether Crohn's has you.

That's good news Linney...sounds like you have just been unlucky with the other problems you have had ( hopefully, they'll all soon be a thing of the past! I see the surgeon on Thursday so will let you know how I get on. I've been taking azathioprine for a few weeks now, with no problems.

Jboi, sounds like you had a verrrry tough time! I am so thankful for how well my surgery and recovery have gone. Although after the op the pain wasn't pleasant, I was always aware it could have been a lot worse! And I agree with you about the morphine, I couldn't wait to get rid of it and have 'normal' painkillers, which were much more effective. 7 weeks on, I am amazed at how well and normal I feel - not something I'm used to, which I'm sure you can all relate to. So, I'm just enjoying it at the moment and looking forward to the future. I'll continue to build my knowledge, and if the crohn's does attack again, I'll cross that bridge when/if I come to it. The fact is, it may never come back. But I always like to prepare myself for the worst like I did with the surgery...so when it actually came to having it, it didn't feel like a big deal, and I was pretty calm and patient throughout.

Nic x

Hi folks, I haven't posted for a while cos guess what - I'v been back in hospital.  this time my heart rate was through the roof and I had pneumonia, another week in hospital being pumped full of antibiotics which my body wanted to get rid of from both ends - great.  Anyway after my second round of antibiotics at home (the bombardment in hospital didn't clear it) I am beginning to feel human again.  My energy levels are just above zero (I had a unit of blood in hosp as my iron levels were very low) and am going to ask for another blood test when I see my GP tomorrow.  Got to have 24 hr ECG in a couple of weeks to check that the heart prob was being caused by the infection (fingers crosssed).  Can't believe I have had so many probs since the surgery just waiting to see if it did any good cos just looking at an antibiotic sending me running to the loo and my poor bowels have had no chance to get into any routine.  Lets hope this is the end of it all and we can all enjoy our Christmas.
xx

Aww Linney, you have had such a tough time! I hope you managed to enjoy your Christmas and haven't had any more problems.

Not much to update from my side...I still have diarrhoea, mainly after I eat, which is proving to be a problem when I am not at home. And the area of my stomach around my scar is still slightly swollen and numb....I wonder how long this lasts?! I had my op almost 14 weeks ago. I'm beginning to think that maybe it's scar tissue, in which case, I would seriously consider lipo. As long as I keep my weight right down, it doesn't look too bad, but as soon as I put on even as much as 1lb, I start to become really aware of how out of shape it looks. Don't get me wrong, I am still on cloud 9 and so grateful for where I am in life at the moment.

xx

Hope all is well Linney xx