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Low anterior colon resection temp ileostomy

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Posted 11/5/2016 12:44 PM (GMT 0)
Hi

I am 7 weeks post surgery and I must say life with a bag is emotional and I hate it but I understand I am in this until my reversal.
Has anyone had this surgery due to a full thickness rectal prolapse ( caused by my crohns and my bowel functions and obstructions) thankfully I had no IBD inflammation in my colon that was being removed.
I had a dye test at 5.5 weeks and it showed a tiny leak( now I have read that this is very early to be having a dye test and should not really have it before 6-8 weeks? I am next due my dye test 8th Dec and if I'm healed I will be in for my reversal surgery after that! I am so nervous.
If anyone knows anyone or has been through same or similar to me I would be so grateful!
I feel like I am looking at myself through a window..... I was so active and carefree ( even living with my IBD since2009) before this surgery but since having it feel like new worries about toilets etc.
Posted 11/5/2016 1:43 PM (GMT 0)
I would say that was pretty early to have dye test especially depending how much damage there was. When I had my resection with loop my surgeon wouldn't even consider the test before 8 weeks.
Posted 11/5/2016 4:27 PM (GMT 0)
Hi

Thank you for teh repley and I agree I think it was only because of how hard I have been finding things emotionally and in life adjusting to my ileostomy! I was devastated why there was a tiny leak and it was tiny they said! I think it made it hardered because all my surface wounds had healed ....even the scar where they removed the bowel ( like a Csection scar) and around Pebbles so I am looking at being 12 weeks when I have my next dye tests!
I see you are now a perm ileostomy? how do you get over the fear of being out and about?xx
Posted 11/5/2016 5:46 PM (GMT 0)
I'm sorry you are having a hard time adjusting. I never really had a fear of going out with my ostomy. In my case I was kind of the opposite. After my first surgery I felt so much better with my loop ostomy that it just didnt really affect me and I was ready to get back to living.

Do you have a good pouching system that you are comfortable with? Do you have a support system and people you are comfortable around that know about the ostomy?
Posted 11/5/2016 5:57 PM (GMT 0)
Everyone does react to an ileostomy differently. I think a lot of it has to do with how sick they are before surgery and their quality of life before surgery.

You said you were still very active and carefree with your Crohns. I was for several years until the last year before my surgery. I had to go on a leave from work, was on TPN for a month and couldn't eat, and having accidents. So for me it was so much easier leaving the house with my ostomy than my colon. I was able to return to things like exercise and work that I had been too sick to do. If you were still able to do things you wanted before surgery this is probably a harder adjustment.
Posted 11/5/2016 6:17 PM (GMT 0)
Hi

Yes I had major issues with my crohns and transit and being able to tolerate foods..... I am very slight as a result but I still got on with life as I knew it! I still went gym and yoga and I work for a very busy investment bank....... I never let it stop me!! yes I had accidents along the way but I always just took it for what it was...... accidents became more leading upto my surgery before the obstruction and massive rectal prolapse as a result of build up and obstruction!
Yes now I am back onto a convex which suits pebbles much better than a flat baseplate! Don't get me wrong I look after and change everything ( I change mine very regular because that's just me) plus I have very sensitive skin so I need to ensure all the adhesive is off etc..... so I cant use all the barriers and rings etc...... they were making things very time consuming and I should have never stopped using a convex but you learn as you go along!

I just think its a lot to get your head around and adjust!!! having something alien outside your body is a lot to take in! I wear vanilla blush support undies and they are great! I think its just very emotional for me I have had a real stinker of a year health wise ( I spent 3 months in hospital at the start of the year) so recovery etc.... then all this to happen its just overload!!

I only really have my hubby for support ( and ostomy family I have met in such a short space of time have been great!!) my boss is great as her cousin has a bag as a result of bowel cancer! she said people with temp bags tend to find it harder to attach than if you have perm ones because it has to be life!!!

I am grateful I have a great top surgeon and stoma nurses who are fab but sometimes you just need a hug!
Posted 11/5/2016 10:10 PM (GMT 0)
That makes a lot of sense the temp vs permanent. Even though I adjusted fairly well to the temp I was ready to be reversed and had hope of life being more normal again. My cousin also has Crohns, he had a resection over 10 years ago and is still in remission. I really wanted that to be my outcome too!

My permanent ileo was in a way an elective surgery. I had always managed well much like you and then after my reconnect I got more sick than I had been in the whole 18 years of this disease. It was the first time I got depressed and wouldn't leave the house. My GI had a medical plan and didn't think I needed more surgery but I couldn't accept how my life was. I went directly to my surgeon and asked for more surgery. He told me if he operated again it would be the big surgery and permanent. He ran a couple tests and agreed if I wanted the surgery he would do it. He talked to my GI and 2 weeks later it was done.

I totally understand how you feel after a long year and already being hospitalized and an additional recovery.
It sounds like overall you are doing pretty well and just ready to move on! I hope you are able to have your second surgery soon after that 12 weeks.
Posted 11/6/2016 9:21 AM (GMT 0)
Good Morning,

Yes I am hoping that also! My crohns has been around for years now and like I said even when I have felt like I have been run over by a bus its never stopped me being me because I just wouldn't allow it! Yes I have had awful times of losing control and being in a total 'poop' mess but I just sorted that out and moved on and my children and husband have been great all the way through!
My kids ( Oliver 9 and Lois 6 almost 7) just want mummy back....... they want me to go out on bike rides and long walks without worrying etc..... I think kids just look at things differently and given the year I have had they worry when it comes to me going into hospital because they don't think I will be coming home any time soon.

My crohns is behaving itself and I hope that it continues to do so!! like I said it wasn't in the part of the colon that was removed.... that was just the prolapsed piece.

May I ask you was the part of colon that was removed for you when you had your temp ileo was with crohns? did the join heal with no issues and in how many weeks? You read so many stories about people having their ileo reversed after 6 weeks when they have had cancer and tumours removed which I think is just amazing......

I was out of hospital in 5 days after my surgery and my incisions have all healed and getting more normalised daily........ my bikini one is nice and flat....no bumps or redness and all my drain sites are also closed and nice and flat.

I hope your crohns is not still causing you issues even with your ileo?

My crohns tends to attack me up stream..... so from the mouth down.......so had bad reflux and ulcers/sores and hernias up stream earler in the year and I tend to get multiple polyps in large bowel from it but so far its not attacked there.
x
Posted 11/6/2016 5:28 PM (GMT 0)
Good morning!

My Crohns since my final surgery has been in remission. I am so thankful! I'm about 9 months out and its been the best year once I recovered.

The portion of my colon removed was diseased with active Crohns. It was on my descending colon on the left side. The inflammation at that part had gotten so bad I had tiny holes, the colon had hardened and wasnt fully functioning. Which explained why I had such horrible lower left sided pain. After my resection the rest of my colon was clear except for an ulcer in my rectum.

I was out of the hospital in 4 days and externally healed in a few weeks. I did not have any tests until 8 weeks. At 8 weeks my tests showed no leaks but a small amount of colitis just below my anastomosis. Both my GI and surgeon said it was likely diversion colitis from no stool passing through the colon.

I had my takedown surgery 10 1/2 weeks after my first surgery. I had no issues where my resection was and my open wound where the ostomy was healed really well! But the Crohns came back just below my resection and very bad in my rectum. That area is where my disease had always been the most active, left side through my rectum.

It was ironic because my 1st surgery was originally going to be a colectomy but the team of doctors decided it was too risky based on how sick I was and how small I was. Little did they know I would get so sick again and ended up with a permanent ostomy anyways!
Posted 11/7/2016 8:21 AM (GMT 0)
Hi

You are one brave lady and I am glad you are now in a better place and feel like you are getting quality of life back!

You also healed really fast considering what you had done and also active IBD in the mix!

I have my dye test again 8th Dec and I am nervous because you never know what is happening inside and I wish I never had my first one at 5 weeks 5 days!

I am missing my prunes and dried fruits that I had daily on my porridge and in greek yogurt!! also missing mu nuts..... but I do have crunchie peanut/cashew/almond butters on whatever I can lol!!! I just make sure I chew it properly like I do with everything I eat anyway!!!

I am missing my hot drinks as they tend to go through quick so as I don't like to drink warm decafe coffee I have stopped drinking it ..... I have found a decafe barley and rye drink called caro that can be drunk cold so having that warm is ok! its actually really nice and I have flavour drops if I want to mix the flavour!!

I am used to a really high fibre diet missing all my brown and wild rice and buckwheat etc as I am veggie..... I have a high protein lowish fibre diet also to aid healing but my bidy is used to high protein due to training anyway......
Posted 2/2/2021 6:10 AM (GMT 0)
Actually I have mine due to rectal cancer diagonsis at age 43 second time being treated for it. The first time luckily was a polyp only and was out for a week only no pain hardly. This time around I feel like my whole abs are killing me and that the bag from my ileostomy until reversal is pulling my body apart down there especially with stitches. Luckily I have a great support system with my husband and friends and family plus my fur babies. This is insane though I felt less pain in the hospital than I do at home and I am not doing much different. I wonder if its because the stitches are healing and or what? This is only day 2 day home from hospital.
Carey
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