My husband (Earl) had a colectomy in August, had some abscesses and blood clots but is doing okay now. Still feels tired but that may be due to getting up during the night to empty the bag. He has a hard time getting back to sleep. He is ready for the J-Pouch to be constructed. Surgery is scheduled for February 1 in Spokane. 5 hours from home. Dr says he will be in the hospital 3-5 days. Back to work 4-6 weeks. Does this sound right? I contacted his GI (only one in town) to make sure they are aware of what is going on and that they know things about the jpouch. Was told that if he has any problems go to his primary care physician. I think my biggest fear is that nobody in town knows anything about this type of surgery and where do we go if there are problems! What is normal what is not? Besides all the way back to Spokane. Any comments, suggestions, things to watch for, things to expect, etc would really be appreciated! This is the only place I have found answers! Thanks to all!

Kimmer

Hi Kimmer -

I had the three step j-pouch creation (had takedown about six months ago) and the second step was by far the hardest for me. Not from a pain standpoint (because that was about the same as the first surgery), but the second surgery just took so much energy from me. I became dehydrated almost immediately from my loop illeo and stayed that way for the three months until I had takedown.

So, I would definitely watch for dehydration, as that was a huge problem for me.

Regarding the timeline for the hospital, I stayed 3 nights and was back to work in 6 weeks, but I realy pushed myself. I think the 3 to 5 days is optimistic - a lot of people stay five or more nights, but I didn't, and hopefully your husband won't have to either.

As far as who will do the follow up care, it would make me nervous to have anyone but my surgeon, but it sounds like you are in a predictament with the travel to Spokane.

The only other thing to make sure your husband knows is that he probably (everyone is different, that's why I say probably) will begin passing mucous on a more regular basis now. For me, it was two to three times a day and it was hard to "hold in" because it was really slippery. I also had some phantom urgency - meaning, I felt like I really had to go to the bathroom, I would get there, and then nothing would come out. It was not fun. But, all that subsided within two weeks of the surgery.

Best of luck to your husband!
Lisa

I just had step 2 of 3 about 3 weeks ago. I did so much better this go round. I had a PE with the first surgery, and ended up in the hospital for 7 days. This time I was out in 4. I will say this I am in less pain this time, but the loop bites. I am ready to get rid of this thing ASAP. I am attributing the surgery going better largely to being healthier going in. Before the first surgery, I was in very poor shape having gained a ton of weight from the steroids. Being off the drugs and reductions in my body fat really helped me out. If I could get a wafer to stick well I feel like I could go back to work now, but as things are I need to get that worked out, or I will be trapped at home until the next surgery. Good luck on the surgery.

I just had step 2 of 3 done on November 9th and for me, it was much easier than the first surgery. For the first one I was in the hospital for a month and a half (two weeks before surgery and a month after) and took a long time to recover. This was because I was 78 pounds going in and was obviously very sick. This time around it went much better, although I had an abscess and had to be opened up in three different places along my incision. I have those wounds cleaned and packed every other day. Even so, I feel like I didnt even have the surgery...thats how good I feel. I was really worried it would take me a long time to recover but I'm already back to doing my usual 21 year old routine (which involves alot of late nights!). My only real problem has been dehydration as well. Make sure your husband drinks toooons of water/gatoraide (best when mixed together) and keeps with it. My output is almost constant with my loop ileo and his will probably be too. Also, go out and buy some Immodium and get him to take it 1-2 hours before bed. This will slow his output down and reduce/if not eliminate his bathroom trips throughout the night. It is also important he gets some convex wafers. They make a huge difference in stopping leaks and keeping his skin healthy while he has the loop. Goodluck!

Hi Kimmer,
I echo previous posts..hospital stay for me was 9 days .I became severely dehydated almost streight away but didnt know it,,was thinking I was just tired after surgery. Drinking rehydrating drinks would give me an energy boost within 15 minutes sometimes. So bear this in mind.
Also loop ileo was difficult to care for..mine was very flush to skin. Convex wafers are a must. Assura flexible ones worked for me and not forgeting eakin seals!..stock up now.

Best try to keep food low in quantity and more often , simple and bland,,the stoma will adjust within 2-3 weeks.
Mucous discharge was both worrying( unneccesserily so ) and a niusance. In first weeks i d pass lots and sometimes flood the sanitary pads i d have to wear at all times. Some blood was mixed in at times which was normal.It worried me i d be incontinent after takedown but there was no correlation at all.

I d watch out for low grade fever post op as this sometimes can be an indication of infection.
I wouldnt try to get back to work too soon,,this is a major surgery.I ve been off 3 and half months in all now,,back tomorrow.
Good luck!!
xx

This may sound really stupid but is a temp ileo or loop ileo different than what he has now? I think he must have an end ileo?? His stoma sticks out about an inch now. Will they put it in the same place. I should be writing these questions down to ask the surgeon!! But we don't meet with him until the day before the surgery. Thats a month away. Anyway, thanks for all the help. Sounds like it won't be any worse than what he has gone thru already! And since he isn't so sick and hasn't been on the prednisone or remicade, he should be better off.

Hi Kimmer, I am sorry we weren't able to make a time work for visiting when I came through town. When we got home there was a message to call my surgeon regarding my own second step surgery. There are more complications and I may not be able to proceed with a j-pouch. I can't tell you how upset I am! If you have concerns that you think I can help with don't hesitate to email or call. Hope everything goes well for Earl and yourself in February.

I am sorry to hear that! I can totally understand your disappointment. Sounds like you need our support but instead you are offering us yours. You are a wonderful person!! Let me know if there is anything I can do for you!

Kimmer loop ileo is not the same as end ileo.It is made without actually cutting the intestine but sort of lifting it out of the body and it stays in a loop hence name. They put a plastic stick under it for the first few days so it doesnt retract back inside the body whilst the stiches aroound it are healing. Then they pull the stick out.There must be a name for it but i dont know what its called!.the bit that sticks out has two small holes in it . From one hole he ll get the stoma output from food , from other hole mucous will come out sometimes. So with loop ileo you dont het the spout hence its difficult to care for at first.
They usually do it in same place but it depends on the surgeon and the anatomy of the patient.
x

Just a little more info regarding the loop ileo to add to what martiangirl told you. Right now the end of Earl's small intestine is what is attached to his stomach wall forming the stoma. During the second surgery that will be removed and the small intestine will be attached to the rectal cuff. The j pouch will be located between the rectal area and the loop ileo. Because the loop ileo will be located much further up in the small intestine it causes transit time from the stomach to output to become much shorter. It usually is also a very liquid output, especially right after surgery. Salting food and drinking adequate amounts of liquids is essential during this time to prevent dehydration. Because the loop ileo is a small incision in a "kink" in the intestine it can sometimes retract very close to the stomach, and quite often after the initial swelling goes down the "hole" is pointing downwards. This makes it more difficult to get a good fitting appliance. Earl may have to switch to a convex style barrier, which will help lift the stoma up off the skin.

That all makes sense! Thanks. I guess we should make sure to order some more supplies before we go. Thanks for the help!

Hi Kimmer -

I actually would NOT order more supplies before you go. They will give you another "starter" set in the hospital, but until your husband wakes up, you won't know what you're dealing with in terms of his stoma (how flush, etc).

I was unable to use anything from my first step - needed a whole new system for second stoma. And I think that's more of the norm than the exception, but I could be wrong.

In any case, I would wait just so you don't end up paying for things you don't use.

Good luck!
Lisa

I would disagree with Lisa ..its good to have some eakin seals whatever the stoma looks like,,they are a godsent with whatever appliance you use. And having some convex wafers from the word go could make a difference between sore skin and manageable stoma, no matter if flush or not.I wish i had them when i got home from hospital as the trial and error period ended up more error!..

Kimmer,

I totally agree with Martian girl. I spent three painful, discouraging weeks trying to find an appliace that didn't leak. I also tried paste, glue, you name it. Once I started using a convex wafer (Hollister worked the best for me) and Eakins seals it became a non-issue. I wish I had known that from the time I left the hospital. Also, fiber cookies help firm up the stool, I think as much as is possible with a loop ostomy.

Good luck with all of this. It will all work out.

Vic