Help! Surgery in 3 days, but no symptoms at the moment!

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Hi, I will try to keep this as brief as possible!

I have been diagnosed with crohns for 17 yrs, but had it for approx 22! I suffered the usual to start with, toilet visits sickness, skin rashes, and very sore mouth. I had an appendix op which turned out to be crohns and symptoms worsened at 27.After the birth of my first child at 29 I had pain every day,fatigue and could hardly walk at some points. I fell pregnant again a year and a half later and pregnancy was great no symptoms! After was a different story, I was in a flare for 6 years + this carried on over the years with terrible pain most days, some days were better than others however I don't think I had one day completely feeling well! I take 100 mg of azathioprine and have B12 injections every three months, I also had a course of vitamin d and folic acid.I avoided an MRI as was quite scared, I began to feel a little better in 2015 but I am regimental with my diet this helps me a lot! I avoid all the usual, fizzy drinks no skins, pips, vegetables! I mainly live on rubbish! This I think causes me fatigue but keeps pain at bay! Jan 2016 I succumbed to having an MRI as I was so fed up with my diet! The result they found was 3 Fibrostenotic strictures all in close proximity to each other in the small bowel.After the MRI I was in a lot of pain! Since I have had the scan my inflammation markers are good within normal range. But it was suggested I have the resection now as at some point I will probably need it and best to have it while I have it under control? Also better to have it electively rather than emergency. My surgery is 3 days away now and I am going through all the positives and negatives (Like we all do) your experiences would be greatly appreciated as I am feeling rather nervous, thankyou.

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25 Replies

  • Posted

    Hi Kerry,

    I had surgery in Feb, a terminal ileum and sigmoid bowel resection. Before surgery I got to the point where I could only have nutritional drinks. I was told a year earlier based on MRI that my Crohns had progressed, I was taken off Humira, told I would need surgery at some point but to try a trial drug. At the time my symptoms weren't that bad and I was like you living on a small range of foods lacking nutritional value. 6 months later without a drug that worked I was in absolute agony. Ended up on drinks got a date for surgery. Now 10 weeks after surgery, I am driving, eating fruit and veg I haven't had in 10 years like apples and cabbage. I am so glad I had the surgery. Recovery takes time, but be positive about it, get yourself out of bed and set yourself small goals to build up. I was lucky as I had support from my family to take care of chores and my 3year old. I can't tell you how good it is not to fear pain when you eat something. I know I'm not cured, but with this disease you have to really enjoy and make the best of the good times.

    Good luck with surgery.

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    • Posted

      Thank you so much for your reply! We have obviously been in a similar situation which you don't find to often as everyone is different with crohns.

      I think at the moment because I am having very limited symptoms (due to control of diet) I am having difficulty thinking about walking in to have this op. I have actually considered having a fizzy drink to make sure I have still got this disease, silly I know but then I could justify the op.My bowel nurses have convinced me this is the right path.I believe patients with Fibrostenotic crohns are at more risk of perforation? Did u have the fibrosis?

      Anyway I am so pleased you have had a positive outcome and long may it continue. I hope I am able to say the same in the future, thankyou again.

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  • Posted

    Good luck for your surgery.

    I had ileocacel resection in oct.

    The worst bit is the trapped wind shoulder pain the next day.

    The scar is now quite small, bowel movements are interesting. But it is so so so nice to eat without the stricture pain.

    I dont know if youve had children, but the feeling was quite similar, they jelly belly feeling.

    Youll probably have a drain and a catheter for a few days, and various lines for fluids pain killers etc.

    I was able to drink 5 days post op then soup jelly icecream. There were randon.stabby pains and very liquid poop when the bowels woke up.

    Good luck and i wish you a speedy recovery.

    A cushion if you need to cough or sneeze, loose pants for your stitches.

    Oh i had open surgery, lap is meant to heal quicker.

    Assomeone else said, it takes time. I was 37kg im now 7.2 and have so much more energy.

    I cannot eat all stuff, but i can eat so much more.good luck x

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    • Posted

      Sorry, zinc and caster cream or such like may also help. Im not sure if thats everyone, but they took 22cm ilieum up to and including ascending colon.

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    • Posted

      Hi Alfielefoo,

      Thankyou for your reply.

      It's good to know what may help after the surgery, and what to expect, I have had two children so I know what you mean by the jelly belly!

      I am having laparoscopic surgery so hopefully will heal quicker than open. Thank you.

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  • Posted

    Hi Kerry, Having had crohns now for 53 yrs I know what you are going through.

    ​I tell people thatb I dont have good days, I have reasonable day and unreasonable.   days I have had two bowel resection during this time, II have also had my appendix removed and my gallbladder. and masny other operations. The last one was for the removal of my left kidney, as they found a tumor on it which at the time was told that it was 85% certain that it was cancer so with those odds I agreed to have it removed.  I waited 6 weeks for the biopsy result to come.

    ​Fortunately it turned out to be benign but this also meant that there was no need to remove the kidney.   I love my food but after a bit my stomach becomes that upset that I go on a diet of buttered toast until it starts feeling better.  You have not said if this is your first surgery. I hope that everything goes well.for which I am sure that it will..keep us updated.

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    • Posted

      Hi decndor,

      Thankyou for your reply.

      I am sorry to hear that you have been through so much and at one point uneccesssarily.

      This will be my first op although I was booked in 14 years ago 2 years after my second child was born 3 times but I couldn't go through with it as my children were so small I couldn't bear to leave them. This was at a time when my crohns was at its worse.

      Now as I have good management of the disease I think I am finding it difficult to walk in and have the op, it is due to a chance of perforation that I am going ahead with it. Also hopefully getting a better diet! Thanks again and I will keep you informed.

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  • Posted

    Hi Kerry, glad that you are symptom free at the moment! I was very much like you - was trying to manage it all myself with diet as I wanted to avoid meds & surgery.(I had been offered both). I thought I was doing ok. Suddenly one day though I had an obstruction due to one of my strictures & I had small perforation in my bowel. By the time they found this out I had an abscess around my whole bowel & surgery without being drastic wasn't an option. I had six weeks of liquid diet & antibiotics before surgery to remove 70cm small bowel & ileocecal valve. Can't say the recovery was quick or easy but I never realised how much pain I had lived with for so many years until I didn't have it anymore. Now I can eat so much more & feel healthier as a result. Having the surgery while you are healthy will give you a much quicker recovery time I'm sure. Hope it all goes well.

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    • Posted

      Hi HellyE,

      Thankyou so much! My team at the hospital have all said better to do it while I am fit and well.

      In the early days when my crohns was at it's worse after having children I didn't know how to get through each day! Waves of pain which had me unable to move! I was sick constantly and up to 30 toilet visits a day also with back pain and various other symptoms. I didn't know how i was going to manage to function... But I did, I ran a home and I had to get on with it. I saw my consultant who was very helpful we tried a few different drugs, eventually settling for azathioprine, inbetween I had to go to the doctors who I don't think had a clue! So I avoided them in the future, I started to learn to control my diet, like you trying to manage it myself to get the best of a bad situation,this took a number of years but these last two years I have felt better even more so the last 5 months which I am finding really strange, even to the point I find myself thinking have I actually got anything wrong with me?? But it's only because I remember those bad bad days too well.(sorry to go on) but before you had the perforation was you feeling well yourself too due to your diet? And did you have the fibrosis around the strictures? Thank you for your reply, and I am glad you are having a much better time with it all now. It's so nice to know it does work out well.

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    • Posted

      Yes Kerry I was doing great. I'd been trying to lose weight (as I had it to lose) & worked hard on combining healthy plate ideas with low residue diet & found things I could tolerate etc that were bit healthier. I was cycling loads & feeling fab. I would get bouts of pain if I ate something which caused a partial obstruction where strictures were but this wasn't too often as I was being so careful. Usually only if I was tempted by something on the rare occasion I went out or just being polite if a friend cooked! Always had the buscopan to hand - haven't taken any in the 16months since op. I don't remember about fibrosis I'm afraid, I know I had 3 strictures & very narrow - this is caused by scar tissue from repeated damage so I guess it could be otherwise termed fibrosis. I've played around with food more recently as biggest issue since op excessive wind. They're not sure on cause & not been very helpful. Could be due to the weeks & weeks of multiple antibiotics I was on (8weeks x3) or the bit they took away (ileocecal valve) as no separation between small & large bowel. Loosely following low-fodmap diet / reduced gluten & lactose intake & it has helped tho some days are not so good but no pain in my gut - my joints are another matter though! Best wishes for next week

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    • Posted

      Thank you so much HellyE for the reply, it gives me a bigger picture as to what it may be like for me, you and I have been very similar In how crohns has displayed itself!

      I wish you well and I am grateful for you taking the time to reply.

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  • Posted

    I am so pleased you posted this as I am in similar position.  I had a blockage in Feb and faced having emergency ileostomy.  At the same time I was given steroids and Humira in an attempt to avert the surgery.  The meds worked and 10 days later I was sent home and given instructions to eat a low residue diet.  I am now feeling so well but I have an appointment in May to discuss when/if to do the surgery (removal of whole colon). Like you, I cannot imagine voluntarily submitting myself to this when I feel so well!  However, I understand the argument for having it done whilst the situation is under control rather than waiting for another emergency!  It's a tough one. I wish you all the best and hope you keep us posted as to how you get on.  Most comments from people who have had surgery seem very positive, which is encouraging. 

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    • Posted

      If it helps either of you, and i dont want anyone to think less of me,

      I have had housebound agorophobia and panic attacks for some years now.

      So as you can imagine even getting to the hospital was an utter nightmare. Leaving the house is like sitting your driving test or sky diving. So the days before admission i was an utter mess.

      I was put on the main ward to start, i resisted having the picc line in, steroids made me more loopy, couldnt stop crying and did not know how id make the 8 days lead up to surgery.

      After the first night they found me a side room, the nurses and the registrar surgeon were amazing. I never felt like the loopy lady in the side room.

      I eventually consented to the picc line after i had tissue block from.the tpn and vitamins.

      Somehow i survived the 8 days and surgery mroning i was trying to get the registrar to take my lines out, pass me my clothes and was trying to escape.ive never sweated so much.

      My surgeon came and bqsicalky had the staff waiting to kidnap me.

      So i was a petulant child for the anesthetist, refused the epidural, refused morphine, so he said hed give me something else.

      He gave me a shot in my arm.and i asked what it was, he said just a pain killer and mild sedative.

      Next thing i was waking up i. The recovery bay.

      I let fear stop me having treatment. After the surgery they said id have died without it.

      I didnt realise i was so ill.

      If i can do it. You can both do it.

      Xxxxxxx

      Id like to addi wasnt always like this. I had a good career etc.

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    • Posted

      Hi esther77657,

      I have been looking on this sight for a while myself to see if anyone is in a similar position.

      The thought of surgery when you have a lack of symptoms just doesn't feel right, In my case I feel that it is more mechanical as inflammation is under control through diet and medication, how I am justifying the surgery now after listening to other people's experiences is better to get it done now while I have no other health problems and in a good position to recover quicker and hopefully (fingers crossed) have a healthier diet after surgery. It will also take away the risk of perforation, thank you for your comment and I will definitely let you know how everything goes, speaking to people that are in a similar position has really helped me today and like you say there are lots of positive outcomes which make it all the more reason to go ahead with it.

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    • Posted

      Alfielefoo I definitely wouldn't think any the less of you as I have been in a similar situation.

      After both my children were at school I found that I had time to think about things more (I worked part time weekends) I had already removed myself from social situations and developed fears of going to the dentist as I thought that anything that went in my mouth was going to affect me one way or another.(Which was not like me before the crohns took hold) this in turn caused me to have anxiety issues which led to panic attacks...also like you I developed a fear of letting anyone treat me for pain! I also analyse everything that is said to me,

      I am so pleased you got through it and had your treatment!

      I am starting to panic now which is why I posted today....

      I hope you are better now? Talking about these things often helps.

      Just to let you know I am refusing the epidural too, it's a little too much! X

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    • Posted

      Thank you kerry. I really appreciate that! I too have the dental thing going on which is bizare as it was my job for 20 years.

      I managed ok pain wise with fentyl drip and paracetamol iv.

      I sort of think the fear of treatment helps us deal with the pain maybe. Who knows.

      Panic attacks are evil! I had a second ct scan in agust which because i wouldnt have the contrast, was of no.clinical use and showed nothing at all. So i decided i didnt hqve crohns

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    • Posted

      Thank you kerry i can identify totally with what youve said!

      I managed ok with paracetamol iv and fentyl (think thats the spelling)

      Dental wise, ive snapped a few teeth and have put it off through fear too. Ironic as it was my job!

      I guess we need to remember theres nothing to fear except fear itself.

      I do feel so much better and i hope you will too.

      X

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    • Posted

      I think you may be right about the fear of treatment helping to deal with the pain! You know you have to get through it and you do.

      Why would you not have the contrast? I only ask this as after my last MRI I was in pain and really nauseous, which I didn't get the first time around.

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    • Posted

      I dont know why. I wouldnt if im honest. Fear of a reaction to it ..id been waiting to be admitted from clinic for hours, the waiting room for scan was heaving, and i guess it was control freak kicking in.

      My dad said his made him feel flushed and a bit sick. So i decided it wasnt for me.

      I didnt realise my post had posted i thought it had deleted!

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    • Posted

      I really appreciate your comments and your openness.  This must make things so much more difficult for you. You probably don't want sympathy but I really feel for you.  Thank you for sharing. 

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    • Posted

      Thank you.

      I feel for you and kerry! Good luck.for your appt, hope you remain blockage free and your guts behave.

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