ILEOSTOMY Reversal problems

I can't offer any advice, sorry, but there are others on here who can, I'm sure. I have my reversal coming up in 10 days, and hoping I don't have similar problems - I'm told it will be straight forward, but I remain wary.

Hi Wendy, and I thought I had it bad!

my first reversal went wrong and I had my second April 2014. I had all the issues you mention after, I was crying with pain and trying to wipe my bottom was like sitting on a piece of broken glass. I saw my GP who gave me trimovate cream, and also I used normal anusol. It wasn't till I started using loperamide that I got firmer stools, but even then some still very loose. Diet for me was and is mega important. Porridge or oatybix in the morning for me, rice cakes or oat cakes before I eat lunch or dinner. Avoid fruit and veg that grows above ground, but root veg is good, sweet potato, parsnip, turnip etc.

I now take 1 loperamide 30 mins before breakfast and 1 before evening meal. I'm by no means perfect but have improved in last 2 months thanks to help and advise from hospital. Castor and zinc oil is now my choice of cream, and I use those toilet wet wipes. It will get better, but you can't say how long. 

Tim

Try the Anderson bowel program which uses psyllium and loperamide. You can get loperamide from your gp for free

https://www4.mdanderson.org/pe/index.cfm?pageName=opendoc&docid=34

psyllium work wonders for me that and porridge, marshmallows and chicken and rice. 

Good luck with it all

Hi Wendy,

my situation not as bad as yours , but we are in 2015 i would be knocking on my surgeons door skip your gp go back to the source, on the plus side 12months on i'am in top form  but i say to myself what if i had not gone back to my surgeon, get back you dont need to be in pain. best wishes

Ancient

thank you so much for replying -Good lick with your reversal I truly hope all goes well for you. I must ask are you in anyway connected to Triicky Dicky;s in Redruth? Good luck again and I will keep my fingers crossed for you --xx

Thank you for taking the time to reply to me Tim.Yes your early problems mirror mine exactly.  I have taken on board all your good advice and hope it will help me too. My GP told me not to use annusol? Strange that they do not all sing from the same hymn book ! It

I had a Bad, bad day and night yesterday  but hanging on to the thought that it can only get better.Your reply has given me hope thank you Much love x

Nope, no connection to Tricky Dickys in Redruth, I have been asked that before. Just a common form of "Richard" and a nickname I used to have at work.

one thing I am going to do this week is make sure who my support should be after I'm discharged. I'm not going to be left not knowing who I should be talking to if I have problems. i'm guessing it could be the stoma nurses.

just had my reversal and not having a great time. constant diarrhoea controlled only by Imodium. having to go to the toilet some 10_15 times a day. as you can imagine very sore and tired as it seems to happen mostly at night. I am assured it will get better, that I can only hope for.

I would advise anyone thinking of a reversal to gather all the facts before going ahead. With hindsight I would not have done it. I had an active free life with the bag. I am now a prisoner in my own home, as I need to be close to a toilet.

First off consider how your bowels worked before you had the bag. Did you have trouble passing stools or have pains. This is unlikely to change after the reversal if it was not connected to the cancer. 

one thing I was not told prior to surgery was this type of surgery can cause something called Bile acid,salt malabsorption. The acids and salt produced by your liver, released into you gut help digest food and form stools. when these acids and salts don't 're_absorb properly it will cause diarrhoea. They are sending me for a scan to see if this is the case.

full explanation 

https://en.m.wikipedia.org/wiki/Bile_acid_malabsorption

I live in hope, but if nothing changes within six months then I am opting for the bag again. I can't live life as a slave to the toilet.

Ask more questions before going ahead.

Nohn - my reversal is 7 weeks old now and I recognise many of the symptoms that you cite, but it's pretty much what I expected, so I'm not too worried. Yes, I am using loperamide (imodium), but I knew I would be. I can only say stick with it, I hated my bag so am really pleased it's gone. I was told that bowel movements will recover to some extent over time, probably months, but some people don't return to where they were before (my brother is a surgeon and at the weekend he was saying that some people do return to "normal").

my bowels were never great to begin with so I expect to remain on lopramide.

anyway, early days for you, a bit of patience I think.

I had a reversal in October 2014 and it is only in the last couple of Months that I have been able to leave the House without wearing Incontinence Pads.

So I would say stick with it and things will settle down.

Mick the Wolf.