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Awaiting stricture operation advice about recovery requested

Posted , 6 users are following.

sharon09529
sharon09529

I was diagnosed about 16 months ago following appendix removal and bowel adhesions op. Had three courses steroids, tried aza, mercaptopurine and most recently methatrxate, but all had bad side effects and the mercaptapurine affected liver.

My lovely gastroenterologist (who really listens) has written to surgeon to have the stricture 20 cm at last scan removed and bowel rejoined. The stricture is at the terminal illeum.

I am hoping that readers can advice/share their experiences of similar, I have read NHS info but would like to hear from real people. I don't scare easy just want the full picture as Forewarned is forearmed.

Particular questions are:

How long in hospital

How long recovering at home and what able to do

How soon back to work and what able to do

What able to eat before and after

What happened after op

Remission?

Meds after?

Many thanks

0 likes, 12 replies

12 Replies

  • stephaney28634
    stephaney28634 sharon09529

    Posted

    Hi Sharon, it's good your bowel will be rejoined up again. I can't tell you what you want to know. Hope other people on forum will.
  • nannylin
    nannylin sharon09529

    Posted

    Wow this could be a long post ! I had surgery to remove strictures 5 years ago. Surgery went well I spent that night in height dependancy and moved to the ward the next day. Pain relief was good and I didn't feel too bad. Had my cathater out the next day and was allowed out of bed. I was only allowed fluids until then. When you first get moving make sure you stand upright and don't curl to protect your wound it pays dividends in the following weeks. I was allowed soft solids by day4 but no fruit veg or salad. Be prepared for your bowel to come back to life suddenly (I didn't make it out of bed to the loo in time as I couldn't move fast enough - so embarrassing !) spent a week in hospital walking around the ward as much as I felt I could. I was only home 10 days and had terrible pain and ended back at A&E with an infection which needed draining and so another week in hospital. At home do not lift anything, do not stand for long periods and listen to your body. I was off work for 3 months as I also developed pneumonia (another week in hospital) As for diet I ate as if I was having a flare white bread, rice, chicken no fruit veg or salad for quite a few weeks and tried to introduce other foods gradually. This wasn't too successful and I was as bad with constant loo trips as before surgery but at my post op gastro appointment at 3 months I was put on a drug called Questran. It's a (revolting) powder I take every day which replaces bile salts (I think) and it gave me my life back. I still get the odd bad day but on the whole I feel great and can eat even veg and salad in moderation. Fats still are a no no. So be kind to yourself, listen to your body and take gentle walks but also rest. Expect your bowel to take time to recover and expect to feel weepy and low, it's major surgery. i wish you luck and hope you feel much better post op please feel free to contact me if I can help further.
  • amy40095
    amy40095 sharon09529

    Posted

    Hi Sharon,

    I have had this operation in April this year this was the second time they have removed a section from my bowel first time it was 20cm such as your self more recently only 7cm.

    In total I was in hospital 2 weeks one week before the operation and one week after.

    Before your operation I was on a polymeric diet (liquids only) due to the struicture gave me differculties to eat.

    The operation went fine I spent 2 nights in high dependansy. Was moved up to a ward where they in courage you to get out of bed and move early on to help the recovery process my catheter was taken out 4 days after op. It took a while for my

    Bowels to work but once your eating and opening your bowels you can go home.

    I agree with the comment below listen to your body. Do not push yourself. Do not stand for long and take it slowly otherwise you have the risk of infection.

    I was told from the surgeon to rest and take up to 6 weeks to heal before you consider going back to work. I tried earlier as I am stubborn and my wound got slightly infected and had to take more time off. If you need more than 6 weeks take it. I'm still having problems due to rushing back into everything.

    Food wise everyone is different in what they can and cannot eat as things upset patients differently. I recommend a plain diet small and often and build yourself up slowly.

    I would advise when home and off to not do anything heavy duty no cleaning or lifting. Just take it easy.

    As I mentioned my wound got infected ( both times) this is common if they operate from belly button they advise cleaning it and if it looks even slightly icky or feels worse go to your gp it's better to catch it soon as my first operation I was rushed back into hospital for a week as was very ill.

    I needed some pain killers as I was allergic to morphine and a few others I was given something simalar to take for a week out of hospital, plus I suffer with neusea so was given Cyclazine.

    I hope this has answered your questions and don't worry it isn't that bad tbh take a book and keep rested. I hope it goes well for you you'll be back to normal in to time trust me I was after my first op and that was the same as yours. Message me if you have any further questions. Xx

    • sharon09529
      sharon09529 amy40095

      Posted

      dear Amy

      Thank you so much for taking the time to reply, you were very brave what with infections, and sounds like you were quite poorly right before the operation.

      I have taken on board what you say about resting and being patient I too ( up till recently) would just keep pushing myself .

      Am saving up to afford a cleaner/ironing help for six weeks while I recover as bless his heart hubby will try but I will be frustrated when he (inevitably) doesn't do it right!

      Will stock up on library books and start recording lots of films and enjoy the rest and not rush back to work which I did after appendix/adhesions op. Do you think that its a crohns thing that we just want to "get over it and get on!"?

  • sharon09529
    sharon09529

    Posted

    Hi again

    Having started this post four months ago, today I am still on tenterhooks

    dreading a second (NHS) "operation postponed" phone call. I was due to go in on October 27th but the day before was told that an urgent cancer case had " bumped" me. Fair play and prayers for that patient obviously but still messes with your head and organising work etc. Shouldn't grumble I know but I just want it over with.

    In the last fortnight symptoms have been pretty awful and have missed a further three and half days of work😱 and used two days holiday. Only taking paracetamol at the moment. Doing all hospital has advised and re-read the previous answers to my original questions, thanks for your advice.

    Bring it on ......please......will keep you posted

    • HellyE
      HellyE sharon09529

      Posted

      Hi Sharon, hope you've had your surgery & are recovering well. I am due to have similar op (I think, from what you said) two weeks today! 20cm in distal ileum due to strictures /perforation & abcess. As I previously have had flares in terminal ileum my surgeon said she may have to remove alot more, taking the ileo-cecal valve & cecum. Did you have to have this taken too? Hope you're doing ok, don't forget to take it steady, I think you're right us crohnies just don't want to be defeated & always try to get on as quick as we can. I too am just learning that sometimes I have to stop or say no. Take care.
  • tracey36633
    tracey36633 sharon09529

    Posted

    Hi, can I ask at which point does a stricture need surgery? Recent MRI has shown I have a 15cm stricture at terminal ileum but I have no idea what this actually means going forward (still waiting for my follow up with gastro). Can strictures heal or is surgery inevitable??
    • nannylin
      nannylin tracey36633

      Posted

      Hi I had surgery 5 years ago as my strictures were causing obstructions. I asked to be referred for surgery as my gastro and I agree surgery would have to happen as some point in the future (strictures cannot get better only worse) and I preferred the idea of surgery in as a planned procedure while I was felt fairly well rather than an emergency. The operation went well and i have been doing well since. My last colonoscopy showed only slight inflammation at the slight of the join. I feel the surgery was well worth it although I do know some people only get a few months relief.
  • sharon09529
    sharon09529

    Posted

    Hi Tracy 36633

    My stricture is also in terminal illeum and as far as I have been able to find out they don't heal themselves, and can become problematic as they can tighten and interfere with your processing your food which can lead to blockage and sort of bags forming before the blockage.

    Mine has blocked a few times now and very painful, but I didn't need to go hospital but I know some people get worse and have to go in for treatment.

    Removal/resection is ( from what I have read) not inevitable but likely at some point.

    As I type all is still on for tomorrow will keep u posted xxx

  • sharon09529
    sharon09529

    Posted

    Hi Tracey 36633

    Well, I had the op! Hurray, went in at 7:30 on the 10th in anaesthetic room at 9:15, came around in recovery at 2:15 onto ward at 4:30, I had patient controlled analgesia overnight which I believe was morphine based . I might have overdone this as was sick a few times, but am used to that so no biggie and the nurses gave me a nausea tablet,. Catheter out by 8am following morning, up to wash self at ten with iv attached for fluids. Tablets paracetamol and coedine during this day.

    Made myself walk around and stretch, pain full but did help. I'm a very large lady and had several inserts for terminal ilieum resection and gall bladder removal.

    32 staples removed from nine different little holes ( didnt feel a thing) at 6pm the day after surgery, and discharged 2pm today. Just have five cm glued hole under a dressing to change tomorrow and dry out day or so after.

    Big thanks to treliske hospital Truro

    Very soft diet not had bm yet will keep you posted. Overall although painful now truly no worse that a bad stricture episode or bad flare up.

    Thanks for support xx

    • tracey36633
      tracey36633 sharon09529

      Posted

      So glad to hear your op went well. Hope your recovery goes well. All the best x
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