Anxious abou Reversal

Hi Guys

so its coming up to a year since i had my sub total colectomy and ilesostomy and after being very ill for quite some time life has been great. i am the healthiest i have ever been and much hapier. I have changed my life around from always being busy, driven, non social and making a great living and sick to being relaxed, happy, healthy and active. Its taken quite a bit it time to get use to the change in lifestyle and consciously refusing work and money in order to be happy and healthy.

I have only 15cm of my rectum left which was left in place for a potential reversal. originally i was told some people have the take down after 6 months however my surgeon recommended 1 year, so i listened. The surgeon is very happy with my progress. i had a scope on Friday and the GI specialist said everything looks great and thinks now is the time if ever to attempt the reversal. A few months ago he was really concerned about my liver functions tests and specifically my billurbin rising and talk of a potential transplant due to my PSC (i think he was being cautious because i feel amazing but the blood markers hit the 100 threshold when they start looking deeper into the disease). he now thinks the rising billirubin may have been caused due to the inflximab i tried before surgery.

I never in my head thought the reversal would come so quickly. when i was sick i didn't mind the procedures and medications because it was a hope that i could get better. now that i am healthy i am a little worried about the outcome but want to at least give it a go. I know docs always try and give worst case scenarios and first do no harm. After telling me there is no time better than now he then said if i were you i would keep it because their is a risk of a flare up and the disease spreading and could lead to emergency surgery like he said happened to another patient of his. talk about mixed signals. i told him that my surgeon wanted to do the take down in 2 stages to reduce the risk of sepsis and he then he agreed this would prevent the risk of a leak. I know they are there to keep me healthy

the way i see it i want to give it a go while we have no kids and i am the healthiest i have every been to help with recovery. i have dealt fine with having a stoma and if things get bad i could go back to having a permanent stoma. its annoying i am getting so fit again and playing soccer 3 - 4 times a week and will be out of action for another 2- 4 months till i recover from the 2 surgeries.

I need some advice and support about whether what im considering is reasonable or not, or should i just stay as i am and possibly try get of all the meds and live life with a stoma?

with only 15cm of large bowel left will i be running to the toilet often?

i meet my surgeon in 2 weeks, surgery tentatively booked in for 5th December.

sorry for the rant but as you may gather im 80 % sure i want to get this done but the other 20% of me is really worried and anxious.

Thanks in Advance! :sign0085:

Hi Kela!

Glad to hear things are moving forward so well. I've been down that road, didn't have much choice though. Yes, you will be going to the bathroom more often after your takedown (or reversal, as you call it). But you won't be running, at least not like before when you were really sick. You can always take imodium or something like that to help. Eating more fiber helps too, but it's really easy to gain too much weight that way. you'll find the right balance. You may have to do some exercises to strengthen your muscles down below- they are not very big and you haven't used them in a while. But those muscles will get used to the new you and get stronger. There is always a risk of IBD returning. I have not heard of anyone needing "emergency surgery" once they've already had their colon removed. I would think the emergency comes when there is a rupture somewhere, but I haven't heard of that happening with your kind of surgery. I'm not a doctor though, but to me it seems highly unlikely.

Since you don't have much rectum left, I assume you have some kind of internal pouch made with small intestine- perhaps a j-pouch or s-pouch, whatever they do now. I had lots of problems with my j-pouch, but nothing was life threatening by any means. The problems I had needed more surgery to fix and ultimately we gave up and went with a permanent ileostomy. Having a stoma for over 25 years has been no problem and certainly better than having problems all the time. I wouldn't worry so much. You're doing this at the right time in your life and you don't want regrets afterwards! Oh, as for recovery it's really not that bad. You sound like you are in good shape now, so I bet the recovery goes quicker than you think. The only thing you want to stay away from is lifting anything heavy for a while- ask you doctor how much is "heavy". Once you start eating, your strength comes back pretty quick. Keep us posted!

I can understand your anxieties about anything having to do with surgery. Any of us would feel the same!

Ultimately it is your personal choice to go through with a reversal. I too must assume they are doing a J pouch on you?

Whatever your decision is, best of luck!

no one has mentioned a j pouch. i think they cannot do the j pouch because i have crohns. ill ask the surgeon in a couple of weeks when i meet with him, thanks for the reply and well wishes

I've also been down your road. I was told the illeostomy would be on for 6 months and I had it a year. I was feeling better and the doctors suggested reversal. I also do not have much sigmoid left. I went for the reversal, I was 30 at the time. I actually find I go to the washroom less as I did during a flare up. I have felt great since the reversal, although there was a bit of an adjustment phase with food. So far, so good, I have been fine and it's 10 years later now. I am sure if I ever flare up again in that region, I will be left with a permanent one, but fingers crossed that it won't happen. In your case, sounds like the best case scenario is that you have the reversal and you go back to life pre-illeostomy ( but hopefully crohn's free and in remission
Worst case is that you go back to having another premanent illeostomy if you flare up again and surgery is required. Anyways, I wish you the best in whatever you decide.

Dasha, its great to here your doing well and gives me a boost and some confidence to know it has been positive for you. thanks for taking the time to respond. i will keep you updated

10 days till surgery, getting nervous hoping i do not have problems with the loop ileo instead of the end ileo - spoke to surgeon, as my rectum is still intact i wont need a j pouch

thanks for the well wishes!

I am sure it will go very well! Please keep us updated on your progress. Good luck and be positive.
:thumleft:

Hoping it all goes as planned, I'm sure it will and you will be feeling 'jolly' by Christmas.

Keep us updated, it is always great to hear how you are going.

I had the two stage operation myself when I had my bags. The second bags was like you said to give my gut time to heal. I was not disappointed. it work great.

Good luck to you.

Good luck.I am going to have a reversal also and I can't wait!Nothing is worse than a leaky stoma that can't be controlled and has a mind of its own.I have Crohn's also.I hope your surgery goes well and you get well again fast!

Yeah tho I walk thru the valley of leaky shit, I shall fear no valley of reversal!

:biggrin:

Kela i'm in a similar situation and as thing's stand because of some other problems and the risks of having a reversal, it seems to me anyway, that it isn't worth it when I feel relatively fine and am starting to get back on my feet.

Speaking to my gastro last week he was saying that a lot of people end up not opting for the reversal as sometimes it might not be worth it. or that people just end up being happy as they are.. and if it aint broke... why fix it?..

Of course having a stoma isn't exactly ideal and has it's own problems... but having a reversal could either go great and put me back to normal... or I could be running to the Loo constantly, Crohns could return and I would be back to square one.

for me, and i'm assuming it's similar for you.. that after nearly 18 months since my surgery I'm at a point where I'm wanting to get on with life and the timing just isn't right. I want to go back to work, and having another operation will put all that back again.

If you go for the operation I hope it all goes well for you. Ultimately, if you think you would be happier having everything reversed (or atleast giving it a go and not wondering what if) and that the time is right, then go for it.

Good Luck
x

Thanks guys. 1 week away now, excited but bumed I won't be able to be active for a while till I recover from stage 2 surgery.

Hi guys. Quick update. Had my ileorectal anastomosis on wed 5th dec. things seemed to go fine but I felt sore. by Saturday morning I was back in because my haemoglobin had dropped and my inr was high - I was bleeding in the adbodomen and it took a while to show up. Lost 4L of blood. They opened me up sat, packed me with bandages, taped me up, kept me in ICu, went back in late Sunday took out packing bandages and bleeding had stopped and stitched me up again. I don't remember much from the 2nd surgery as I was sedated for a few days. Now 1 week post op I am bruised all over the tummy, very sore, distended. Because of my liver problems the tpn has caused a bit of havoc there too.


Results are now on the improve, I'm tubeless and no drains. Walking 4-6 laps of ward each day hunched over. Should be home in 2-3 days. Loop ileo is working. I was the fittest I have been in many many years and was not expecting this difficult a recovery. I'm over the worse I guess. Recover for 2-3 months then the final reversal but at this point I'm in no rush and don't want to think about that

Oh no! No one expects nasty complications like that. I am glad you are starting to mend. Bet you can't wait to get home. :ghug:

Kela80 said:

no one has mentioned a j pouch. i think they cannot do the j pouch because i have crohns. ill ask the surgeon in a couple of weeks when i meet with him, thanks for the reply and well wishes

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That's correct. If you have Crohns you aren't a candidate because the disease could flare up in the part of intestine used for your j-pouch. However, I do know of one person that was dx with UC and had a j-pouch and one year later she learned she really had Crohns, but the j-pouch still looks good. At some point though, that may not be the case and the j-pouch will have to be removed.

Sure cant wait to get home. When I was I'll I didn't mind having procedures etc done as much knowing it could help the way I was living and feeling. This time I was healthy and hopefully stay that way. Good time to be going home for Xmas my wife has prepared the house with Xmas decorations. Can't wait to relax be home and feel better again.

Kela80, how are you doing now a couple years later? Better?

Hi Dasha. I'm doing very well. I take codeine 2-3 times a day to thicken stools and have 3-6 BMs per day. I just had a 7 week holiday overseas with no problems. It's been 4 months since my reversal and I'm doing much better than I would have imagined. I'm very grateful

That's wonderful news! Glad to hear you are doing well and was able to travel ))

Kela80, I am able to have this surgery next year I just have my rectum left also. After all you been through would you recommend doing this. I am so nervous about doing it you read so many bad stories, but you seem to have a positive experience! Do you have to take any medicine for the Crohns?

Thomas i was the same. im so grateful that it has worked out fine and i am feeling great. i take 5mg Prednisilone and some Codeine to thicken the stools and lessen the amount of bow motions. feel free to email me. my Surgeon helped instill confidence that it will all be fine and my GI team has been great

Welcome home Kela!!
Sounds like you continue to heal well.

I go back and forth on having it done.. I want rid of the bag so bad. but I hear the reoperation rate is high I hope my new GI doctor can help me with it... I would like to think this would be my last surgery. Is the reversal better vs the bag? Wish there was a easy answer to this!

if i were to chose bag v no bag i would chose no bag. having said that i woud have no issues going back to the bag should the crohns re-occur. the bag didnt stop me form doing anything, i swam, i played sport. the only real problem was my sleep patterns. it was kinda really weird to get my head around using my bum again. i was meant to have a reversal after 6 months however eneded going ahead after 18 months. i didnt want to rush it, i wanted to make sure my body was ready and healed.

I dream of being bag less.. The bag is more of a pain as far as sleeping for me.. My friend had the reversal and the Crohn's came back in the small bowel. I have the mindset that this would be my last surgery.. The hard part for me would be going back to a bag.. As far as the BM they are not painful? Do you take and supplements to help with the Crohns sorry for all the questions!

at the moment im taking things for crohns and PSC (liver condition). I take VSL#3 (pro bitotic), Thermal liver detox, N Acetyle Cystein, Vit D3 Forte Drops, Vit ABDEK, Black seed oil, Tumeric powder. put it all together and smash it down in the morning. at night i take the Vit ABDEK (its a fat soulble multi vitamin), VSL. no probs keep asking questions. What is it about the bag you dont like? how long you had it! how old are you?

I have had it for a month. I had emergency surgery didn't even know I had Crohn's disease till it was to late. I am 34 years old. I just hate sleeping with it and bathing with it is the biggest. If I do the reverse I was going to change diet and supplements. I have the mindset this would be my last surgery, but with Crohn's you never know unfortunately. I think quality of life would be better with out the bag. But the risk of having to go back is scaring me from doing it. Then you hear that the BM's are many and hurt.. I wish it was a easy decision!

its still new, give it time. i had time to prepare as mine was planned. i was 32 when i got mine ( 5 years earlier when i was warned i might end up with a bag i told the doc i would rather die than have a bag, in the end life got so bad i chose the bag and was pleading for something to help me get better). like i said i tried to carry on with life as much as i could normally. try not to let it stop you. whats the problem with bathing with it. i changed mine every time i showered as i didnt like to have a wet wafer and i found this would cause more leaks. i used micro pore tape to get extra adhesion to stop leaks. i experimented with different bags and in the end found one that suited me but like i said wasn't the best when it got wet. to play sport and do activities i had a waste band and stoma guard. i think once you accept it and move on and get on with life things fall into place. try and be strong and ask penty of questions on the forum, to your medical team and stoma nurse. there is no benefit in being down and upset about it.

I notice a lot of people with Crohn's go for a permanent stoma.. That is what scares me.. It is like if you get 10 years your lucky.. I hate this disease!!!

I think I am giving up on reversal.. I talked to so many people that is hasn't worked out I am not sure if you use the new drugs and change diet that it would work not sure? Once the colon is gone I think it is to late to try to do things different..

Thomas I am also new to the ostomy bag. I hate it too, sleeping, bathing, the leaks, the fears. It's miserable! You are only one month out so you really can't say whether a reversal is possible or not. I think in a few months time your doctor can discuss that with you and see if its a viable option.

I lost all my colon except my rectum.. I have read that is not a good idea to do the reversal.. besides the Crohn's coming back, I would be in the bathroom 20xs a day. I hear you I hate the bag too. I am going to do everything in my power to reverse it. I have an abscess on my bottom that is going to hold things up. It hasn't fully healed this disease can be very depressing.

Thomas, i too had only my rectum left and i am only going to toilet about 3 - 6 times a day. just take your time, do not rush. as i said i could have had my reversal after 6 months but waited an extra 12 months as i know it was better for the long term. stay strong and concentrate on getting better.

I have a lot of healing yet to do.. 3-6 times a day sounds manageable.. I hope I can have it done I think it will make things a little better. They gave me 6 months but recommended 12 months. I think with diet and medicine it should last a long time. My new GI says it should last forever, but I think he is just being overconfident! My biggest thing is I never was on Medicine so I don't know what failed or not. It just hit me all at once and my colon got abscessed and was to bad to save Thanks for all your help Kela80!!

no problem. one thing i have learnt is that doctors / specialists are always conservative and provide the worst scenario. i always tried to keep positive mindset and understood where the doctors are coming from. Thier job is to keep you well. for them there are risks associated with the reversal so they do not recommend it. the only person who knows whether its a risk worth taking is you. you know your body the best. I know its hard to be patient when your in the situation but try to think about the long term.

My GI team is actually for it which shocked me.. I had to look up the risks myself.. That's why I have been reluctant to commit to it yet.. My friend had the reversal and Crohn's went into his small intestine. It is so hit or miss with Crohn's, but I am glad your surgery was a success gives me hope!!

Hi, I'm new to this site but i have 30+ years with crohns/colitis experiences.
I have been through a lot, all possible meds., and of course a bag among an abundance of testing, trials etc...
in 1998, i had a partial colon recession, removed a portion and reconnected. 3 days into healing, the connection failed i ended up with emergency surgery and woke up to a bag!
After 6 months of healing and 10cm of rectum left, I got reconnected and i have not had any problems since(knock on wood).
I would recommend anyone to try the reversal, you have nothing to lose. Besides, you are always going to have loose bowels, regardless. now i have to deal with 6-8 sometimes more.
Best of luck,
P.S. if you gain 1 year or it could go indefinitely, wouldn't you be better off than giving up without trying!?

I am just scared they say with Crohn's the connection don't last very long. I would like to get rid of the bag myself I would feel more normal.. I just fear going to the bathroom all the time.. or the risk of surgery.. I heard there is risk of erectile dis function for us guys.. There is just a ton of things I worry about with this. I am glad your doing good, it gives me hope!

LeSir do you take and supplements or medicine for crohn's. And are you able to live a normal life with this connection as far as going to work, eating etc. Thanks for your help!!

Hi, the "worry" part had a ton of effects on my controlling the crohns, give it a chance, you never know.
I did, now i'm on maintenance meds; Humira and since that i don't even get fistulas anymore. i have been on all approved meds for crohns/colitis; this one works the best. i get mild upper respiratory infections i.e. sore throat.
Hang in there, there will be a cure soon! don't cut it out yet.
p.s. you'll still get constant bathroom needs no matter what!
my re-connection goes back to 1999;

I am just scared of becoming a stinky old man Did it get you back to normal? I miss my colon every day I never got a chance to use the new medicine.