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Take down scheduled, so nervous and don't want to give my bag back!

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Posted Today 3:30 PM (GMT 0)
So I met with my surgeon last week and my takedown for my temp ileostomy is schedule for 12/18. I am so nervous and dreading this surgery. In just 10 weeks I have become so used to my stoma and the bag I can't imagine giving it back. When I think about surgery it makes me sad!

Now I kind of wish they had done the emergency surgery when they were going to take my whole colon and make this permanent. I have 2/3 healthy colon so I know they say my best option was the resection and I can't keep the ostomy but I really fear needing to go to the bathroom again.

Anyone on here have an ostomy for just a resection and not a pouch? Were things normal like before you were sick? My GI doc says that all that is left right now is healthy colon so I should go to the bathroom normal when this is all done, but I just don't believe her!
Posted Today 5:02 PM (GMT 0)
I wonder why they said you cannot keep it.

My first ileo was emergency after an issue with a resection and reversed after 3 months of healing. I loved life with it and was able to be a "normal" person with it (even went skiing!).

After the reversal my problems came back. I asked for my second temporary loop and my doc's both chuckled...they knew I would want another...it just had to be my decision.

I have since had a proctocolectomy and have a permanent ileo (lived with the temp one for close to 8 years). But was still on meds, yearly colonoscopies, etc..

Those decisions were the best for me. It sounds like you are totally ok with keeping your ileo...it's really up to you...but even with the reversal you know how life will be if things don't work out the way the doc's hope. The mystery is gone...don't stress too much about what might/might not happen. If all goes well, great. If not, you're able to make informed decisions about what the next step for YOU is.

Good luck on 12/18...I'll be sending good vibes your way!
Posted Today 5:11 PM (GMT 0)
back in 2013 I had 15 inches of the left side of my colon removed due to NUMEROUS giant pseudopolyps. At the time it was decided it was best to remove just that section. The rest of my colon was normal. After surgery I had a temp colostomy due to having a leak where they did the join and it needed time to heal. After takedown surgery, my colon had to re-learn to work as it was dormant for 4 months. I really couldn't hold my bowel movements in for a while. I literally had a trash can at the end of the couch because that's as far as I could make it initially. It eventually settled until my UC decided to attack what was remaining of my colon. Since then I had constant bathroom accidents and felt sick all the time. No meds worked for me which brought me to my decision of getting the J Pouch
Posted Today 5:33 PM (GMT 0)
My understanding was since I still have most of my colon Once the resection is healed it needs to resume function and cannot stay dormant. I was told since this is Crohns and not UC I should keep as much intestines as I can for as long as I can. Although if the disease comes back I will not hesitate to ask for a proctocolectomy.

My cousin had a resection and has been disease free for almost 10 years however he was never as sick as me.

Urgency is a concern. The surgeon said I coul go back to work after 2 weeks but some days I can barely hold the mucus in that I still have which freaks me out. My Dr said there isn't any disease in my rectum but my muscle tone is compromised from past inflammation.
Posted Today 5:35 PM (GMT 0)
As long as your Crohn's stays away, you should be okay. I have lost far more of your colon than you have and I honestly think I would have been fine if my Crohn's/colitis (not entirely sure what it is now) had just stayed away: I wasn't having extreme urgency or accidents even in the first week after surgery. But of course the Crohn's just had to return almost immediately - that's so utterly typical of my life, I don't even know why I bothered wasting time having the reversal surgery and hoping for anything different.

But you're not me and so you may have a far better outcome - the Crohn's may not come back for years. I've known a few people get 20-year-long remissions out of surgery on the Crohn's board. It really is so random.
Posted Today 8:13 PM (GMT 0)
I think NCOT is right, it's up in the air. I hope you're one of the lucky ones who get a very long remission from removing the bad part. I would imagine it is common or they wouldn't do it... I think that with your situation, you would be very likely to have normal BMs again after you heal. Hopefully you get there quickly. My takedown was technically a "resection" so I would imagine you will be in and out just as quickly. I would think you would be back to normal a lot faster though since you've still got a lot of your original parts :) I know with my end ileo, I felt that way, like it was easy and no big deal. Once I got the loop, I was dying to get rid of it. It's nice that you've had a good experience with the loop.
Posted 12/5/2015 9:53 PM (GMT 0)
Hi there,

Wanted to share my experience with you, letting you know your feelings are completely normal.

I had diverticulosis of the entire colon, and after my colectomy, I developed a leak of my small to my rectum and wasn't observed properly and lead to multiple events.

That was 5 years ago. In the beginning, I didn't want to be touched again because of the trauma. I thought to myself that if an emergency happened, I would go ahead and be reversed. 3 years later, my gallbladder needed to be removed. I thought this is what I've been preparing for, lets go ahead with the reversal. I discussed options with my surgeon, one being i would have 2 surgeries instead of 1 to rejoin the tissue again. So, he first scoped me because 3 years of dormancy is quite a long time. I had alot of mucus, but otherwise, I had a lot of rectum left and after the surgeries, it would take time. The morning of the surgery, i canceled that part of the surgery, only having my gallbladder removed.

I'm afraid of all the what if's. I understand medical terminology and understand of what I need to do that is in the best interest of my health and well being.

I'm glad that you are reaching out here, knowing how to better prepare for your life ahead. My cousin that has Crohn's just had a sigmoid resection, and is doing great. Many people here have shared stories. Being 10 weeks out from the colostomy is not long and your rectum should regain functionality sooner than being years out.

Talk to your doctor, even try contacting stoma nurses. Your local ostomy association will have people to talk to. You have every right to receive the proper knowledge towards your deprivation.

My surgeon, because my rectum has been atrophic for so long and my mucus issue is at times temperamental, he suggested prior to my upcoming surgery or when my mucus acts up, that taking my affluent out of my bag into my rectum will help with mucus (enema), will start to retrain my rectum, and studies have shown it's helping with inflammation from Crohns. I haven't been receptive to the idea, didn't ask the specifics, but when I do ever do surgery, or my mucus becomes intolerable, I will.
Posted 12/6/2015 2:40 AM (GMT 0)
Hi cupcakes. I had a temporary ileo due to a sigmoid volvulus. My colon decided all on its own to twist 540 degrees. The doctors tried to untwist it by pretty much giving me a couple of colonoscopies, but the twist was too tight, so they had to operate. The surgeon removed 18 inches of my colon and, because there was so much inflammation of the rest of the colon, she decided to give me a temp ileo until the inflammation subsided. It was supposed to be three or four weeks, but because of complications, including incurring pneumonia (likely from aspirating some gunk from the NG tube), three or four weeks stretched out to about 10 weeks. Unlike you, I tolerated the bag, but I couldn't wait to get rid of it.

The surgery was straightforward. I think she told me it took about two hours, from when I was wheeled into the OR until I went to the recovery room. The first night after the surgery was pretty much a blur, but the second night was rough. I had very bad gas pains, so I was advised to walk. And walk I did. I must have walked from about 10PM to 4AM. The night shift nurses understood, but they couldn't help kid of laughing as I went by, and I thought that was great. We had a good time with it.

Around 4AM, I passed some gas, and with that, the flood gates opened. I must have had 20 bowel movements from 4AM until about 8PM. The nurses finally got my surgeon to relent and give me something to help control the movements. The gas pains lingered, in much reduced intensity, for about two more weeks. I continued to walk quite a bit, and that helped to relieve those pains. I was cleared for regular exercise about 4 weeks after the reversal.

I did have a couple of partial blockages in the 12 months following the reconnect. I had never been a big fluid guy, but I learned that I needed to keep drinking a lot of fluids. That was because the area where they reconnected me was narrower than usual and any hint of dehydration would make the colon even smaller and more prone to blockages. As I said, I had to be hospitalized for two of them, just to get rehydrated. I had all the symptoms of a third blockage and even went to the ER. But they were quite busy that night and while I waited, I drank a couple of bottles of water and the pain subsided, so I went home.

Knock on wood, I've been symptom free since then.
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