Temporary Ileostomy vs Permanent Ileostomy surgery questions

Hello,

A little background...I am 22 years old and was diagnosed with Crohn's disease at the age of 10, I currently am on my second temporary ileostomy and have had it for three years now. I have a lot of fistulas around my rectum and have perianal disease (10+ surgeries for abscesses). I have tried Remicade/Humira/Cimzia/Tysabri/Entyvio to fix this area but unfortunately nothing seems to work so the permanent ileostomy (and remove the rectum) is my only option.

I was curious how this surgery stacks up against the temporary ileostomy surgery. My assumption is that it's a bit tougher but a lot of similarities as well. I stayed in the hospital 3 and 4 days respectively for my first two ostomy surgeries. My surgeon said 5 days is what to expect for this one. Similarly to the temporary ileostomy surgeries, he said I could go back to exercising after a month, but I always ease back into it in days 30-45.

When fully recovered did you notice a big difference in energy? My main symptoms are just fatigue and rectal pain.

Also how did your weight change, if at all? I tend to have a hard time gaining weight and was wondering if this will change after surgery.

Any insight on the differences in the recoveries of these procedures would be greatly appreciated!

Thank you!

I don't understand this "butt healing" stuff, not saying it's not true for some, but I didn't have that problem after rectum removal. Stoma wise, you should notice a MASSIVE difference, end ileo's are much easier to deal with than loops. As I understand it, not excreting from the rear, should resolve the Abscess problem. I had one myself a few years ago, and they are no fun at all. I definitely think you are getting the correct surgery done, and will notice a massive life improving difference. I wish you the best with it all.

Thank you NCOT.....the butt wound has been the bane of my recovery and others on here as well. My surgeon said with people who have a lot of rectal disease (me and by the sounds of it the OP) the area is very hard to heal completely.

Jack,I went from a temp ileo to a permanent one and I love it! It's much easier to manage the end ileo.

As I have indicated I have to go back for another surgery because my butt wound won't heal. Dr described it as "If you tape two of your fingers together for 50 years and then remove the tape, your fingers will not have grown together because our skin doesn't heal to each other and that's what the edges of my wound are now. So, back under to cut out some of the scar tissue and hope with no sitting or bending is time it will heal. It's truly only 7cms deep....so not huge by any means.

Silent Lucidity, I am happy to go further into details as I'm sure Blueglass would as well if you would like further info on why butt wounds don't heal.

Jack, I hope all goes well for you. If you are somewhat healthy going in, you should do just fine!

K

Thank you for the feedback and support! I have seen the same colorectal surgeon for all my procedures. I am having my anus removed as well and the area will be sewn up. He is having a plastic surgeon sit in on my surgery.

I am confused on how an end ileo would be easier to manage. My surgeon said my stoma will be the same and that he will be stapling off the rest of my intestine. He is taking out the remaining 6 inches or so of my sigmoid colon as well.

Post Edited (jack2011) : 6/1/2015 5:52:20 PM (GMT-6)

That's exactly me too! All my disease was in my large intestine, rectum and anus! Nothing, nadda in my small. I am not on any meds and truly feel great!

Once my butt heals I will be better than I have been in 21 years!

You will do great!

NCOT, I thought I was demonstrating that not everyone gets this problem. Not everyone has a good j-pouch outcome (like myself), but nobody gets shot down for saying they're fantastic. For some they are, for others they're not. Some have trouble healing in the butt, others don't. I didn't, and posted as such. I believe this gives the board balance and a degree of statistic. If you don't believe that's helpful, it's your opinion, I do. You have been shown quite a degree of sympathy and support on this forum, but do you honestly think your moans and groans help other people? I'm not saying you shouldn't use this board for that support, but if we're going to start breaking down posts according to their level of help for others, well I'm afraid you better start analysing your own. That being said, I'd rather we just post freely (non abusively, of course).

Well, just thought I'd check in since I was mentioned. Yes, I had trouble w/the butt wound healing, and that happens. Others heal fine.

It sounds like you don't have a whole lot of choice, as you've been through just about all the drugs and so much trouble w/abscesses etc.

But yes, yes much more energy -- and that was worth all the problems, which were often just annoying not debilitating ....

Also keep in mind that people write more when they have problems (including me specifically....). So people who are doing fine are less likely to be posting on the forum.

Exercising after a month seems optimistic, but I guess it depends on what kind of exercise, and you are a lot younger than me.

Hello everybody. Yesterday I had my surgery. Sigmoid, rectum and anus were removed. He kept the same stoma I had going into the procedure, as it was already just 6 inches of so from the end of my small intestine and had good shape and output.

Also, to sew/close the anal opening, the plastic surgeon in on the procedure took some muscle from my thigh so that he could close the wound perfectly with the correct amount of tension.

Pain has been controllable, though I suspect day two will be touhher. Just thought I would fill you all in!

Post Edited (jack2011) : 6/17/2015 11:19:59 PM (GMT-6)

yup, good thoughts your way! that plastic surgeon sounds like he knows what he's doing- I'll be interested to hear how that wound heals! Keep up with the pain meds- I seem to remember Days 2 & 3 being rough- mentally as much as physically. After that, smooth sailing! Keep us updated.

Hello everybody, just thought I'd give an update.

One month until working out was a bit ambitious looking back haha. Rhe rectal/anus removal is not why though. The trouble I'm having is with my leg! They took out my gracilis muscle to help the anal closure. I think this was a good call, as it seems a lot of people have trouble with their wounds. I have no doubt mine will be sealed and heal fine, as they took a decent chunk from my leg to make sure of it lol.

Right now I'm having trouble using my leg and my groin has been in pain so I have been taking plenty of pain medications. It's frustrating not being able to do simple things on my own such as put on my own shoes etc. I am keeping active and walk 1-2 miles everyday over two walks. Today I took it easy though and just did one short walk.

And when I referred to exercise I meant strictly weight lifting. So perhaps after a month I can do light weights. Its okay with my colorectal surgeon, I just need to discuss it with me plastic surgeon who did the gracilis transplant.