Just had temp ilestomy surgery

[logansmom827]

Calling all of my crohnie's who have had surgery! I had a resection this past June of approx. 12" of my sigmoid colon. After six months my pain came back with a vengance! I was diagnosed six years ago and my body has not responded to meds more than a few months at a time. So, having said all that... I got really bad and very sick again just a few weeks back. I ended up in the ER and ended up having emergency surgery a week ago. My GI and surgeon agreed on a temporary ilestomy in hopes to give my rectum and remaining colon a rest. I feel so much better now and am already eating solids to my surprise. (Low residue diet of course). Now just getting used to the idea of this BAG but hoping that it will help to get a LIFE back.

Just wondering for those of you that had the surgery if you can offer any advise on maintaining diet in order to keep things running smooth. Since I have "the loop" everything is still in tact so they say it's normal to get some stool back there from time to time which seems really weird.

Also wondering if anyone out there suffered for so long where meds did not work and then after you did the reversal surgery did your body respond ok and for how long? I think since I am finally feeling better I am going to be very nervous about reversing it all back. I guess I'm in no hurry and we haven't even put a timeframe on it yet since it's been such a long battle. Would love to hear your stories. This is all so new and scary but hopeful )

 

[happypanda]

I've had my stoma for around two months now. I must say life feels close to what it was like pre crohn's and the few months that remicade was working for me.
They gave me the option to make it a temp, but I went with a full colectomy. I had heard too many stories from the nurses of people regretting getting a reversal. I made the right choice, some of my colon was dead when they took it out and I could have been days away from a burst colon.
I think I would have been crushed to wake up expecting to have my colon still there only to find out that it was gone. I know my roomie in the hospital was shocked to have a stoma when he woke up after his emergency surgery, so I can only imagine what I would have been like.
As for food, I've noticed that I have to avoid sugar. I get to eat pretty much anything, but I keep a very detailed food diary. That way if something goes wrong I can pinpoint it .
I hope that you heal up well and are getting your life back!

 

[logansmom827]

Yes, it was hard to decide whether to take the whole thing or not. If I had UC and not crohns I'm sure I would have opted for the whole thing. The surgeon at Mayo was the one who thought we should do temporary. Tough to call. I'm just hoping like you said for some relief, I already feel 100% better and hoping it lasts

 

[Terriernut]

Welcome Logansmom! Fresh from surgery, the advice is low residue. But you can eat alot of things with an ileo, within reason. You will want to thicken the output more than likely. Bananas, potato chips and rice tend to thicken things up for us. I would NOT suggest popcorn! (oh...I would KILL for popcorn!) Dont get dehydrated, and you will be surprised how quickly you can get dehydrated.

Fresh from surgery, I was like you, I didnt want to go through that again..and how! I'm one year and three months out from surgery. Mine was supposed to be temporary. It is now time to get them to do 'something'.

You may still experience flares from time to time as you have crohns, that's the bad bit. But I have to say, having 'Stan' was a lifesafer for me, and has certainly improved the quality of my life 90%. I can only hope that like me, you have a much better quality of life, and stay well! If you have a chance, read through our little corner of the forum, it can help you prepare for problems, and help you to cope when you are feeling a bit confused. (and oh do we ever get that way sometimes with all the products, etc out there!)
:yfaint:

 

[logansmom827]

Thanks for your reply. It's all so new but I'm looking forward to getting stronger and getting my life and my families life back! Since I've had such a long struggle (almost 6 straight yrs) I've learned not to get to excited. I have started to learn "Wilma's" patterns and knowing how to thicken the stools etc. helps. I am almost thinking its starting to be too thick but maybe that's not possible. I am not sure how long I should keep doing low residue although I think they said at least 3 weeks? I'll call my doctor today

I think the most stressful part is showering and worrying about getting everything wet since I've only changed it twice with help. I've ordered some "osteomy" panties and gonna get a swim wrap. Any good ideas on concealing the bag? It seems so huge on me!!! Oh well.. Thx again for your input it helps!!

 

[dragonfly]

i had UC and they removed my entire colon replaced it with a j-pouch and reconnected me after 3 months. that was in 93-94...later in 94 they decided it was crohns all along. i was only turning 15 at that time but i remember the relief that came with it, getting used to the bag was the worst part!! i had many accidents with it! i remember shopping with my sisters & mom and the things actually fell off!! i also remember the stoma actually fell in twice and had to be fixed, i had alot of problems with it to be honest. just a few days home from the hospital after the surgery i developed an infection in the incision and was back to the hospital the very next day. all in all i think out of that 3 months i was actually at home for 4 of them weeks, the rest was spent in the hospital with some sort of problem. i was actually med free for almost 10 yrs..then after 2 pregnancies my disease must have needed attention so it showed up again....now i am on remicade. its a tough decision to make but you'll know whats right for you. i wish you the best of luck!!

 

[logansmom827]

Wow dragonfly,

Sounds like you have been through a lot with your disease as I have! I made the decision with my surgeon as well as my GI docs to do the temporary based on the fact that I don't have to rush into anything. I know that if I decide to reverse it it will not be an easy decision. I'm just hoping for some long-term relief at this point. More than a few months would be nice. I'm already getting used to this "new friend" although still trying to figure out my summer attire living here in AZ! I guess flowy sun dresses will be my friend for a while thanks so much for all the advise.. I know it will help!

P.s. how long before changing (ripping my skin) the bag doesn't hurt like hell!? Do you guys use the barrier ring with that puddly like seal? It seems that is a mother to get off at least for now???

 

[Terriernut]

Do you have a stoma nurse? Alot of us use barrier rings, it helps alot! Also alot use stoma powder to help with the sore skin. And of course cavillon spray.

Showering or having a bath with the bag off and letting the warm water around the stoma does help with skin healing as well.

 

[glum chump]

Hi logansmom

Have you tried products like "Remove"? I'm not sure where you're located, but there are different products that help get the 'stickies' out when you're taking off the appliance. I use "Remove", but I know that Coloplast has a product as well. They look like little 'wet naps' and I apply it to the 'glue' and my appliance comes off like a dream without hurting my skin. After surgery, for whatever reason, my skin became really sensitive.

I use the barrier rings--Adapt from Hollister. I usually cut it in half and then extend it to fit around my stoma.

As Misty says, it is quite wonderful to shower with the bag off. I also shower with the bag on and use a hairdryer on a low setting to dry my bag off. I change my appliance twice a week.

Things will get easier...!

All the best,

Kismet

 

[Terriernut]

Yeah, Kismet brings up a point, are you using adhesive remover?

Life is MUCH better with adhesive remover!

 

[logansmom827]

Yes the puddy ring so far is not my friend when I change it tmro we'll see if I decide to use again. I guess if the bag stays in place for at least the 3 days I don't need?! I just think once I start showering (not a bath where I baby that area) it won't stay w/o it. Since I just had surgery a week ago is it too soon to shower in the "buff." I thought maybe it was too soon? they say to change bag every 3 days. Is that the general rule? Mine is so active at night that I have to get up at least once sometimes twice to dump even when I try to eat dinner a little early. Oh and I am going to be flying in 2 months which I am a little stressed about. Has anyone experienced issues with cabin pressure? I hear it's not a problem as long as you watch what you eat the day before/of etc. any problems with TSA scanning you etc? Taking supplies in your purse? I assume the scissors can't go lol!

 

[Terriernut]

Yes, it's too soon to shower in the buff, especially not until after your stitches are out.

Its normal to have higher output right after surgery. It can take a couple of months to slow down. You mentioned earlier you were using the old stoma paste stuff? That is a bit old fashioned. There are barrier rings that work MUCH better nowadays. The Salts ones are what I use. They arent there to help the bag stay on so much as to help protect your skin around your stoma. Also, they help with leaks. As for changing your appliance every three days, before I say normal, I have to ask what you are using.

Many members here travel and have no issues. Also, if you get a card from CCFA, it explains your medical condition. You show it check in, security, etc. Yes, you CAN take scissors. You are excempt. As long as you have your card from the CCFA. (unless they've changed something recently)

 

[logansmom827]

Terrienut,

Ok I thought it was too soon to shower buff its not the stoma paste (sorry) its the Hollister barrier rings that you mold to the ring. I use the Hollister 2 pc bag system. Does that make sense? I don't have any pastes. So far I haven't gotten irritated. The card I have from CCFA is the member card that says I can't wait for bathroom.. Is there another card? Oh and I just realized its expired haha

 

[Terriernut]

There is a card for travelling with your kit. I got mine from the stoma nurse with a travel kit. (bless those stoma nurses!) It will keep the security personnel from giving you a grab 'there' for one thing. (always a good thing) The card came with the kit, and explains you have a medical condition and appliance. It allows you to travel with scissors for instance, and mirrors, etc. The CCFA put it together, so certainly it is available. Give them a ring, they should be able to help you out!

As for the rings, I have heard people say Hollister (and this goes for all their stuff) isnt the best. Convatec two piece seem to win hands down. Salts barrier rings are the best I've tried. The point with a barrier ring is to PREVENT you having skin problems in the first place. You dont want that,believe me.

Have a nose around the subforum and see what all say about 'kit'. Lotsa wit and wisdom. And belly laughs. Watch out for that! :ycool:

 

[logansmom827]

Thanks so much. I'll definitely check into those products and ask about that card!

 

[Susan2]

I have travelled a lot by air since I have had my ileostomy (and being an Australian, the flights have been long) and have had no problems with cabin pressure or with "being patted down" even in countries where security is high, such as Jordan. Just make sure that you go to the toilet to empty BEFORE you really need to and before most people finish a meal (the queues can be very long). If you can't get a card, you could prepare some equipment in advance and pack your scissors in your checked-in luggage. (I use pre-cut bags, so don't have that problem.)