No drugs working - Ileum Resection?

Posted , 6 users are following.

Hi, I am wondering if anyone has had ileum resected, and how they were after? I can't take any biologics or immunosuppressant's due to the awful side effects, so next stage is a ileum resection, approx. 10cm? Does this help, and do you still have pain and diarrhoea after? I'd like to hear Personal experiences about this.

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  • Posted

    Hi Laura, sorry to hear you can’t tolerate any meds. I had my ileum resection 5 years ago, 7cm. I have been in remission ever since and took a maintenance dose of Thioprine for almost 2 years before It was deemed okay for me to take no meds at all. I had an abscess beforehand which necessitated the need for surgery. I am going to be honest with you and say that I should have had the best 5 years but unfortunately I have bile salts diarrhea as a result of the op. I wasn’t told this could happen and it was six months down the track before I found out, I thought I was still in a settling down period. This is something you should ask your GI as I don’t know if everyone ends up with it. There is very little to combat it, Questran is about the only thing I was offered and that gave me trapped wind pain and didn’t really help much. Diarrhea is far worse than I had in pre-op flare ups and I take Imodium in various doses to enable me to leave the house. I sincerely hope your op is successful but please do find out about any ongoing issues arising from it. Good luck 😊

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  • Posted

    You need to build a new intestinal flora. How long does it take? Approximately two years and the result is fantastic. How do I know? Fifteen operations, all medicines on the market, all illegal drugs on the market, and then the construction of the new intestinal flora and Chron is no longer present. Doctors could not believe how the fistulas closed themselves. Therefore, food food food is very important !!!
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  • Posted

    I had a resection in March after all drugs failed. I had a foot of small bowel at terminal ileum removed along with ileocaecal valve and first section of large bowel. It was open surgery so quite a major operation and recovery wasn’t easy but you just have to take it easy and let your body heal at its own pace. I no longer have the pain that the stricture and diseased bowel was causing but bowel movements are still just as bad if not worse. I’m seeing my consultant next month to discuss as now possibly bile salt malabsorption due to part of TI being removed. It is worth going through the operation to get rid of the diseased section(s) of bowel, but it is a major operation so shouldn’t be taken lightly. Talk everything through with your consultant and surgeon so you are prepared for what it entails. I do feel much better than before the operation and have managed to put on weight for the first time in years! If I can get the BMs sorted then that would be the icing on the cake. Good luck x
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    • Posted

      Hi Tracey I hope you don’t m(nd me jumping in here but I’m having what sounds like the exact same operation as you - all the same bots removed but I’m having a temporary stoma due to long term steroid use increasing healing time. I’m wondering how long the recovery is roughly. I’m havong my surgery in 3 weeks. I like in Manchester the UK and I have a cottage booked up in Scotland for a quiet break mid August... do you think I will make it or still be too unwell for the 5 hour journey? Sorry to ask just wanted an opinion from someone who’s been through it before I pay the balance! I have been and am very unwell so I’m not going for a crazy holiday just a scene change to convalesce if possible.

      I hope things improve for you very soon. Wishing you well 💟

       

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    • Posted

      Sorry for the typos in there I dont know how to correct them!

      *im having the same bits removed not bots!

      *i live in Manchester not like

      apolologies

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    • Posted

      Hi I was in hosp for a week, I didn’t have a stoma, if they offer you an epidural for post op pain control don’t take it! Epidural was great when I was in labour but it didn’t work for me once I’d woken up, ended up in bed longer because they couldn’t adjust it enough for me to feel my legs and took longer to switch to other pain relief as it had to wear off before I could start any. Apart from early discomfort I was up and showering etc and I found it no worse then recovering from a c-section, it did take quite a few days for my bowels to start working and I was still careful with food out of habit although there were no restrictions recommended. Once I was home I could potter about within reason, took a week or so to get over the post op fatigue and weakness and I took a couple of months, maybe 3 off work because my job involves bending and lifting. I hope your op goes well and that you manage to go away, if there are no complications I don’t see why you would not be recovered enough. Good luck!
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    • Posted

      You will be quite sore after the operation but I was out of bed the next day taking a walk (assisted by physio). The sooner you get up and about the better, but within reason of course. I took 8 weeks off work in total, but I was able to get out and about comfortably by week 3. I’m sure you’ll be fine for your holiday you just need to make sure you don’t over do it as that will hamper recovery. The fatigue really gets you at first so you need to build yourself up slowly. The main thing is to listen to your body as everyone is different. It’s a tough operation but I’m completely recovered now and back to normal. Good luck with the operation and enjoy your holiday. If you have any further questions I’m happy to help x
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    • Posted

      Tracey

      I can’t thank you enough for taking the time to answer, I really appreciate your help. Although of course I’m apprehensive about the operation your personal experiences have put my mind at ease a little. I know it’s nothing like as big as surgery goes but I had an abdominal hysterectomy several years ago and I was stood literally upright the next day (I noticed a lot of patients stooped forward walking from the discomfort) which helped recovery enormously so I fully understand what you’re saying about getting up and moving on so to speak. I’m no stranger to fatigue, I’ve been so very ill with this for way too long and I’d say the fatigue has been the thing that has made it most unbearable. I shall listen to my body as you suggest and thank you once again for your words of wisdom and your kind offer to answer any questions I have in the days ahead...I feel happier to pay the balance on my holiday now!

      I wish you all the very best and continuing good health

      Sara 💟

       

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    • Posted

      Hi Anna thank you so much for replying to me! I really appreciate the “real” experience of people who’ve been through it, Drs, nurses and all other care staff seem to give such conflicting opinions and as much as they see it all the time they don’t truly know what it feels like. I’m glad for the epidural advice, I’ve never had one so wouldn’t have thought twice about it! It must’ve been so frustrating for you! I’m glad your operation went well and you seem to have made a full recovery, it’s reasurring to hear some success stories. Thank you again for kindly taking the time to write. It really has helped and I’m feeling more confident about the possibility of 2 weeks in beautiful Scotland...

      wishing you continuing good health and all the very best

      Sara 💟

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  • Posted

    Hi Laura I had a resection done about 10 years ago now and I was fine afterwards. Don't worry about it, plus things must have moved on since then. Good Luck

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