Life after surgery

Posted , 6 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

Hello

I'm new to the forum. I wanted to share my story and get some feedback from fellow sufferers rather than speak to my care team. OK....

I had two attacks of acute diverticulitis, one in 2013 and one in 2014, the latter being more serious. I was treated both times with IV antibiotics but decided that two hospital admissions was enough. Not knowing when the next attack was going to be was an awful feeling.

So I decided there and then to have elective surgery to remove my sigmoid section  of colon once I had recovered from the diverticulitis and in Jan 2015 I went in for the op. It was keyhole initially to cut and rejoin the colon, woke up from the op, a little sore but no stoma. Then whilst I was still in hospital some 48 hours after the op I deteriorated. The complication was the rejoin had come apart and I was passing waste into my body which gave me faecal peritonitis. The pain was unbeleivable. I had to have emergency surgery after a CT scan confirmed what had happened. It was at this point I had a laparotomy and a colostomy formed (Hartmann's Procedure). I spent then 2 weeks in hospital. That was in January.

Then in August 2015 I went in again to get the colostomy reversed (Hartmann's Reversal) which was to rejoin my colon. I was given an ileostomy to allow the anastomosis (join) to heal. The ileostomy right now isn't easy - even after 7 months training with the colostomy.

I've had the ileostomy for 7 months now & (hopefully) within 2 months time I will get the ileostomy reversed (which I have been told is a simple procedure - maybe 2 days in hospital if no complications) and then I should be able to function normally. Obviously a little unsteady at first. The purpose of the colon is to reabsorb water from waste so less colon less absorbtion. This should settle after several months but I'm sure I will be taking Loperamide tablets for a little bit.

That's my story, I've not aired this to anyone other than friends, family and colleagues before. It is a nightmare but hopefully for me there is light at the end of the tunnel (if nothing else goes wrong) and I appreciate for many people going through serious illness there is no light at the end of the tunnel. Knowing this adds to my emotions, my heart goes out to all tnose suffering, both here and in hospitals nationwide.

So now I am looking at what is in store for me after I get the ileostomy closed. What can I expect? What was your experience. I don't want to be pessimistic but also don't want to be over optimistic. All I want is a good nights uninterrupted sleep and be able to enjoy my hobby of landscape photography and hill walking without sudden urges to go though I'm sure I'm going to have to "work with the condition" rather than return to comp,ete normality.

Thank you for lustening/reading my story.

Scott

0 likes, 27 replies

Report

27 Replies

Next
  • Posted

    Sad story Scott, but you will probably not be on your own. You just have to 

    keep a positive attitude, I have Divi, but it is kept under control with Acidophilus 

    capsules and I  feel good, now it is in there fighting bugs , I also work on the 

    principle that if I am vertical ,I am O.K You WILL be fine 

    Report
  • Posted

    Scott you have had more than your share of misery with this horrible disease. I am sorry.  I have constant pain in my back left side and am assuming at this point that my descending colon is in pretty bad shape.  I dread my next attack - that will in all likelyhood put me in a similar position to you. I am afraid how my life will be, just as you are now. 

    All of a sudden small pleasures that everyone else enjoys - like your walks to do photography seem to become an insurmountable mountain to climb. I understand. 

    I get out in the AM's at this point before I eat anything and have a short 20 minute walk along the harbour here in Canada. Then I will go home and eat - with the knowledge this could cause problems no matter how carefully I manage my diet and add fiber suppliments to ease digestion & elimination. 

    I hope you are able to get out for short walks to enjoy what is around you.  I am hoping the best for you in your upcoming surgery and would be happy to correspond if you need an ear to listen. 

    Best. Donna

    Report
  • Posted

    Thank you for your kind words. The difficulty right niw s the lack if sleep and the inability to go anywhere other than local short walks.

    I try to eat before 5pm because I know the stome will become active later on and up until 3am. I simply cannot get to sleep while it is active so that means I fall asleep about 4am. This in turn has a knock on effect in that I can't wake up at least until 11am (sometimes later). I then do the usual, shower get dressed etc. By the time that's all done it's 3 in the afternoon which leaves me 2 hours to walk somewhere local as I need to be back by 5 to have a small supper. 

    It has turned my life upside down, I've lost my job because of it, I've sold the car so I feel trapped more than anything, stuck in a miserable rut.

    I'd love to get up at 8am, get on the bus into town and at least walk around the harbour with the camera but I just can't do it. I have tried shifting my day pattern back by a few hours (eat at 10am & 2pm) and have earlier nights but it's so difficult.

    I am just hoping that some several months after the ileostomy gets closed I can get a decent nights sleep and that transit times will lengthen so that I can at keast get my life back on track & get back to work.

    I'd just like to hear from someone who has been through it and tell me what I will be like 12 months from now and how much more of an improvement it is over having an ileostomy. If I can eat something and go out for six hours without sudden and urgent urges to go to a toilet that might not be there and get a proper nights sleep I think I'd be a lot happier. 

    Report
  • Posted

    Hi Scott, This just sucks. I get that. Do you have any family support at all? Someone who could take you out now and again? You should call your doctor's office and get a referral to a nurse or other professional that might be able to sort out some of your issues. I am not much help, but do sympathize. Your quality of life is horrible right now, and you need to let your doctor know this. Best - Donna
    Report
  • Posted

    Thanks Donna. I think I will talk to my Dr about this, it's just too much inactivity for my liking. I'm sure he'll say that "my last op is soon and we'll see how it goes from that point". There are the stoma nurses but they're more tailored towards maintenence rather than practical social issues. I'm 46 years old and seeing friends (& everyone else) enjoying their lives does make it hard. I do realize that there are people worse off than I am so I try to bear that in mind. You're right though, it is difficult, there's no doubt about that.
    Report
    • Posted

      Don't know why you sold your car Scott ,time to buy another one. PRONTO   get your freedom back, nothing better for lifting your 

      mood than a drive in the country, even if you can't do the walks yet, 

      windows wide open ,and feel the wind on your face. I do it almost every day, unless the weather is foul.

      Report
    • Posted

      I think it is obvious there are financial concerns along with everything he has to put up with and needed to sell his car. Scott has had to quilt his job. This is an awfull lot on his plate to deal with. A friendly hand would be appreciated. Would be nice if a friend or family member stepped up to the plate.
      Report
  • Posted

    No harm in asking your Doctor.  And at 46 it is a real kick in the chops for sure. I am resentful of how I am and worried about getting to your stage and how to manage, so I totally understand you feeling left out. It is only natural, but I do think at the very least the doctor should direct you to some counselling.  It is hard coming to terms with all this on your own especially when it prevents you from working or owning a car for transportation. It really is cutting life to the bone I would say. Best. Donna
    Report
  • Posted

    Hi Scott

    I've had a ruptured diverticulum and had keyhole rear luckily no stools in abdomen. I may have elective surgery to take out diseased section of colon re keyhole advised without a stoma. Bit

    worried hearing your story

    Report
    • Posted

      hi. it seems that we belong to the unfortunates regarding D.D I had a burst abcess in a pouch,and missed surgery by a whisker, as the shed load of intravenous drugs I was given, stopped the infection spreading

      over a wider area. Have to say the surgeon watched me like a hawk,

      daily to make sure I was O.K as he said to me  " the bugs are Cooking " I was in the ward where most of the patients had bags,

      which will stay with me for the rest of my life, so , I take really good 

      care with what I eat, and the bowels are happy. I seem to be in control now,and will remain so, It's such a god awful disease, without

      added problems. Take care .

      Report
    • Posted

      Hi

      Thanks for your reply. I'm still three weeks on feeling washed out.

      When I eat if too big a portion I get uncomfortable in my abdomen

      I still after the op have the nagging right groin ache. Last night my pain got worse shivering,sweating buckets and felt awful. I'm a

      little sluggish today temp down. My other half keeps saying go to Dr but surely I can't go everytime I ache or get shivery?

      Are you finding certain foods upset you? Greasy food defo a no

      no for me. I've also avoided seeds,rice etc. I see my surgeon in 3

      weeks time

      Report
    • Posted

      Sorry you feel bad ,but I'm with you all the way 

      The best things to eat are sloppy stuff, that doesn't give your stomach 

      much work and small meals ,and chew well. No skins  peas .beans .fruit

      with skins ,but you can peel .Mango's, peaches take the skins off .Rice is O.K just cook it well . but no hot spices for now .Fish is good. baked in the oven ,no ,batter or breadcrumbs . Pasta is good,but not with mince, rice puds .ice cream .eggs scrambled or poached or al omelette

      Take the odd Paracetamol for the pain ,sleep on your back if you can

      Three weeks will soon pass .try not to stress, that's not good.

        

      Report
    • Posted

      Thanks Jacqueline, I eat small and no spicy. I tried fish in batter my error. I am barely able to walk 1/2 mile I used to do 5/6 a day.

      Have three days planned away in Dorset at a bb but really worrying ill not do much. Had one hr trip in car there and back had stop for toilet break and my abdomen. So hours in car three night 8n b&b and no energy is it wise? My other half does need a recharge.

      Hubby says I look washed out and awful. His started to rephrase

      it as I found it upsetting too your looking ok today.

      Report
    • Posted

      You should go, the break will really do you both good.,away from the 

      norm, fresh air ,no cooking,and hopefully you will be near the sea .I go to the coast as often as i can, I just take care what I eat  You could 

      ask the B&B cook, not to give you the "full English" I usually have scrambled eggs with mushrooms , Have a lovely time and DON'T

      worry, then you can tell me when you get back how much you 

      enjoyed it. x

      Report
    • Posted

      Thanks I'll go. It's an ex work college of my husband in Wimborne. We aim to visit Lulworth Cove maybe Lyme Regis and a friend offered us a wheelchair 😕I've said yes as my groin aches.

      I'm at my gp tomorrow to assess my pain maybe get a pick me up?

      Report
    • Posted

      Hi Girl, You are taking on waaaaaay too much for your partner's sake. You are not well enough yet to be doing this. 

      Regarding food, plain all cooked basic small tender meats no skin or fat, gravies, or sauces, steamed veg (non gas ones) and potatoes/sweet potato microwaved - no skin.  It will make things very much better.

      .5 mile is great at this stage. If you do that everyday you are really coming along.

      Best. Donna

      Report
    • Posted

      Good ,you have made the right decision, don't go mad, just enjoy the

      change of scenery .and lots of deep breathing , the break will be a good pick you up 

      Report
    • Posted

      Hi Donna I've managed .5 twice in ten days only. Walk round lidl I'm wiped out. My eldest son's wedding 23 April and no outfit yet!

      I have new potato no skin,mash. Avoided spices and found to eat

      chicken ok. Ready Brek I've got used to again. Omelette I do like a lot. I've avoided rice/seeds and nuts. I drink a lot of blackcurrant squash and Redbush tea.

      I know it's been hard on my hubby and he can take his cycle and enjoy a good ride. I can sit and read. I do love egg benediction when away wondering if be ok!

      Report
    • Posted

      Id love to say ive packed for Dorset. After another 24hrs temp,pain i went to my gp. She sent me to sau again. Admitted iv antibiotocs again blood tests abnormal and cat scan just done. Three weeks i never expected to be back to square one

      So fed up

      Report
    • Posted

      rotten luck, I,m in bed at the moment .on my second day of the 

      norovirus. Mother was taken into hospital, and i went to see her ,so of

      course i caught it .had two sleepless nights. no cure ,just has to run it's

      course.

      You will get better ,just not as fast as you want to.  xx 

      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up