Sharing Recovery Stories After Major Colon Surgery

Hi



I am new to the forum, but would really like to ask how the recovery period was for others.  My husband had 90% of his colon removed and subsequent ileostomy after his first ever flare up of colitis.  His op was on the 8th June and he remains in hospital today sleeping the majority of the time, very weak and still in a lot of pain.  After not eating for 2 weeks before the op he became very weak very quickly and was then given TPN about a week post op, however after feeling much better after only a day the canular fell out & they decided to let him try to eat.  This led to more pains, but CT Scans do not reveal any obstruction.  It appears his small intestine just needs to rest - his stoma appears to be operating as expected.  Last week he had a Chest X Ray which revealed fluid on his lung, so a drain was inserted & following its removal he felt much better, however now he has pus on his lung and has another drain inserted together with a new antibiotic to fight the infection, and looks really rough again. Has anyone else had such a rough recovery? I would love to hear other peoples recovery stories so I am able to put this whole nightmare into perspective.



Many Thanks.

Hi and welcome to the forum.....



Unfortunately - my recovery was very straightforward as I had no bowel problem at all when I had my ileo, was done just to divert things away from a healing fistula (or not as things turned out 6 years ago ....!) so have no experience of what you are going through, but just wanted to say hi and I am sure someone on here will be able to help .... hope things improve for you both soon,

Rach xxx

I was in hospital for 2 weeks post ileo surgery and had that many drains, catheters and lines installed I could barely move to feed myself let alone sit up and start moving around.

I was also severely underweight and anaemic prior to surgery so was told to expect a slow recovery.



I was home 6 weeks after my hospital stay before I could go back to work.  It basically took that long to sit and stand up straight, my pain was centred around the actual scar so becoming mobile was a bit of a nightmare but the first time I could get out and go for a drive was wonderful!  And I didn't realise how much I would enjoy going back to work either!



Unfortunately the longer a patient stays in hospital the more chance there is of getting an infection, there are so many "super" bugs in hospitals now, this can really slow the recovery particularly with someone who has had such a major operation.



"Time heals all wounds" is not much help but recovering from surgery is basically a waiting game for many people.

I sincerely wish the best for you and your husband.



Jo x

Hello Lisah,

   sorry your husband is having such a bad time post-op, but it's less than three weeks after really dreadful surgery, he must be pretty tough to be coping with his situation as well as he is. It's very early days and it sounds as if your medical people are on top of things. My own recovery from surgery (removal of descending colon, rectum, anus, forming of permanent stoma etc.,) wasn't a lot of fun but was without major complication. That was ten years ago, I'm 75 and still going very strong. I'm sure in a very short time you'll look back on this awful period and be proud of the strength you're both showing.

   I wish you all good things.

      Blackbeard

Thank you both for the replies, the stoma nurse assures me they see this slow recovery all the time, just at his age (43) they didnt expect him to go this route.   Still, little steps at a time, I am assured he will get there in the end!



Seeing him get himself from the chair into bed today was a major hurdle for me! I didnt think he even had the strength to stand, but it came from somewhere, bless him!  



Hopefully he will stay on the TPN (2nd lot) for a few days longer to regain more strength, then, one day at a time.



Thanks again for your replies.

My Ostomy Journey: Kimberly | Hollister

Hi Lisa...sorry to hear about your husbands trials...I am in my third week after Colon Op., so I definitely have the same symtoms. I am a lot weaker than I realized, altough I try and get some excercise. I'm just getting used to the Illistomy Bags(first order coming today? But with practice is getting easier. My lungs are STILL occluded, but is getting easier to cough, as my stiches don't hurt as much. My main problem now is that I still don't have an appetite. I know that if I don't eat properly, I won't gain the strength that's needed for the final OP in a couple of months, so I force myself to eat. I'm truly sorry that he is having a rough time, and hope that it will improve soon...God Bless you today!...Joe...

Issah, I totally know what you are talking about, It also happened to me, I got Sepsis and it sound like he might have also, Thats why we had the puss that has to drain out and be on all of the antibotics they can think of.  He will be fine making it this long.  But it is hard on people who care and love the perosn thisn is happening too.  I am so deeply sorry you all are going through this, but it is common.  This is no easy Surgery we go through and I am Praying The Reversal Is much easier.  I have kids and a husband that love me so much they are also Praying hard for Mama to be OK.  Some of what happenens I thinks it happenes in Gods time and not ours, so we have to accept a lot we think we cant handle, but like the Bible say's that the Lord will put nothing On our backs we cannot handle, I trust in that and I hope and Pray all goes good for you all, Love always, Jenny

Hi

lisah

I've had my ileostomy for 5 years now (due to UC) and I think of it as a way of life. I also had post operation problems. My surgery was done on an emergency basis because of excessive rectal bleeding. I was in ICU 96 days because I had a blood clot and developed Pneumonia. Constantly suctioning my lungs to get rid of the fluids helped improve my lung situation. I like your husband had a lot tubes in my lungs gal bladder had a breathing tube. I also was on TPN for 3 to 4 weeks. My weight dropped to 130 lbs. Normally I weigh 172. I was so weak that after getting out of ICU I had to go to rehab for 2 months. There I learned to walk again and regain my muscle strength. You lose a lot being in bed for 3 months. Rehab really put me thru the ringer, I wasn't even able to walk 20 feet without stopping to catch my breath. Nutrition and exercise was very important in my recovery. Once I got out of rehab I started a high protein drink daily to gain my weight back. Now maintaining my Ileostomy is just a matter of routine. I hope I've given you some hope and information. Recovery is very possible however it is a slow process. I want to welcome you to this forum. After all these years I've decided that it just was not my time to leave this good earth. You will find a lot of support here on this site and great advise as you go forward. I'm sorry for all the problems remain positive have hope because it will get better.

Thank you both so much for your replies. It's hard to watch so many people come into hospital for the operation and leave whilst my husband remains, its comforting to realise that the doctors are right and he just needs some time.



Each day at a time, little steps.....TPN been in for over a week now and he has started to eat a little, seems to get some pain before the stoma begins to be active, but assume this is the muscles working.  Has been getting out of bed and moving around.



As the hospital said: 'It can be a slow recovery, but everyone gets there eventually!'

H iwelcome to the forum.  I had my first surgery in 2009 and they found cancer/  i had a rough time as i have copd so breathing was a big problem for me. I was advised not to have surgery again unless it was an emergency.  Well that emergency came 5 months ago from an obstruction froma hernia wrapped around my intestines.  I feel for you and your husband, but know things will improve as I had mrsa and also dehisence, which is when the stitches open and your intestine falls out. I was rushed back to surgery and I am finally healed but still not back to normal.  Your husband is young so he will do better than me. just hang in.  Prayers go to you and him as I know what ain is  Best to you both   Joyce