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20 replies

Struggling to get to take down!

L LjzMember
Hi Everyone! Somewhat new to forum, though totally searched this site since my UC flared and my GI Dr. recommended (May 2013)I move on with my life and have j-pouch surgery. I totally appreciate the info and discussions here as I take this journey.
Had my step 1 in October 2013, and it was a cakewalk! I felt great 2 weeks out, and was able to manage my ostomy, after trying many different appliances. January 2014 was my 2nd surgery,and all went well. However once I got home I began having blockages- mostly due to motility issues, swelling/ inflammation, and a little piece of intestine flapping and blocking output. After many blockages (8-10), 2 admissions back to hospital through ER, I am home with a TPN (PICC line)for nutrition and IV fluid until I can begin eating again. Did ice chips 8 days after last hospital admission/blockage, moved to clear liquids, and unsuccessfully tried cream of wheat cereal yesterday - another blockage.
Have loop ileostomy this time, am trying to hold off til the 2-3 month mark to do takedown, tho my j-pouch was tested and is viable. Not on any meds. I am getting support from surgical team- just checking in here for thoughts/ ideas from people who have experienced this.
Sooo... My questions to you all with real experience is
1. Has anyone else experienced multiple blockages with the loop ileostomy and if so how long before you could eat? Did the blockages continue after take down?
2. I'm having lots, lots clear liquid out the back end/ anus. They think it's coming from pouch. I am also having some mucous which I know is typical, though I could control it after first surgery. Gravity definitely plays into it, as it happens mostly when
I stand. They also think perhaps the increased liquids from TPN may be contributing. Has anyone else experienced this? Most leakage info I've found on this site and others relates to after take down.
Obviously, my concern is that this lack of control (sphincter muscle?) will continue after next surgery. Any ideas, suggestions, experiences would be greatly appreciated!
Sorry to make this post so long- just didn't want to leave out important info! Thank you!
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TE MarieTE MarieMember
Kegel exercises are good to do for sphincter muscle control. Go to the home page here and there is a link to an area that explains how to do them.

I had your step 1 & 2 in one step so went straight to a loop ileo. I had dehydration problems and no blockages but have had some partial ones since my take down.

I wouldn't have take down surgery until the blockages were no longer happening. Unless the blockages are all at the loop won't you continue to have them after take down? Do your doctors think the problem(s) will go away when you have your take down surgery? Obviously something happened during your 2nd surgery that is causing them. I don't know enough but think it's time for a 2nd or 3rd opinion.

So sorry you are going through all of this. The surgeries are horrible enough without having complications like yours. Frowner
L LjzMember
Thank you Jan and Marie for that encouragement!
Brings me to another question- early takedown -seems like doesn't happen often. My surgeon wants to wait til at least 2 months. With all trouble, that's what I want to, but don't want to jeopardize long term positive results. Thoughts/experiences with early takedowns. Pouch was tested at 3 weeks and deemed viable- but not sure about other connections. Thank you!
L LjzMember
Marie,
Thanks for your thoughts- Dr. thinks just the way the loop formed, that piece of intestine ( like flap kind of) blocking the upswing into loop just below stoma. Thinks will be fine after takedown. Guess I would like to know that the entire intestine above loop not inflamed still before takedown but would have to have that scanned when I am weeks out from obstruction. Will ask more when I go in Wednesday. My best for that is to continue ice chips and TPN til then. Thx !
Jan DollarJan DollarModerator, RN, retired
Consider this, if months were always needed for proper healing, then they would never have successful 1-step j-pouch surgery (no ileostomy) or other bowel resections without diverting stomas.

The reality is that normal bowel tissue will knit together and heal in about 3 days. But, when there is active UC present, that can interfere with healing. Also, if there is any tension whatsoever on the connection, that can also interfere with healing. So, if an ileostomy is needed, 4-6 weeks is usually the minimum amount that they like. 3 months is the "abundance of caution." Surgeons usually do not like to venture outside of their usual procedure, but it does not mean it spells disaster if they do. There is probably more risk to long term TPN than having an earlier take-down. Even depriving the intestines of the nutrition of the fecal stream for more than a few weeks is a risk.

So, the idea is to find that magic time frame to avoid all the risks as much as possible. You should be fine, and I would not worry about your upstream gut at this point.

Jan Smiler
L LjzMember
Thank you Grandmaof1! If you don't mind me asking, did you have any problems related to that early takedown? I'm still not able to move past clear liquids, but easily can manage to wait til 8-9 weeks for takedown. I know my surgeon will agree with that but would wait til 12 week if thought it would cause problems down road with adhesions, blockages, leaks from connections, etc.
Thank for jumping in!
B beckysmomMember
Hi. When my daughter had the loop, she had blockages and the drs couldn't figure out where they were coming from. After many ct scans and pouchogram tests she had to have an early take down, but it was only early by 1 month. After the take down they found the cause of her problem was an adhesion hiding right behind the stoma. I don't know if you want to ask if it could be an adhesion, but like you said you still have some swelling from the surgery so your intestines are still recovering and healing.

If you don't mind me asking, my daughter is in college in Chicago, Evanston area, and she is looking for a good GI dr in the Chicago, Evanston area. Can you recommend anyone, maybe at Northwestern Hospital?

Thank you and I wish you well.
L LjzMember
Scheduled for my takedown March 14- yeah? Dr. thinks all will be fine as that will be 9 weeks from #2 surgery? They may do resection on area of intestine that causing my blockages, depending on what they see when they pull it out in surgery. Thinks output will flow despite fact that I am still only tolerating clear liquids, cream of wheat, and blended Avgolemona soup, my new decadence! Pain is way more manageable this week, too. My surgeon also is not worried about sphincter since I did not have incontinence my UC, just urgency. Hope he's right! Thanks for support!
26 days and counting! LJZ
Txgal58Txgal58Member
How soon you had your takedown, as others have said, didn't affect anything. I waited 6 months to have my takedown surgery; my choice. I knew the 2nd surgery wouldn't be anything like the first, but the first knocked me on my butt so bad, I wasn't ready mentally to face ANY kind of surgery for a bit. And once you got used to the ostomy it wasn't so bad. At least no more worrying about where the bathroom was, right?

Well, within a few days of being discharged from the takedown surgery, I started hemorrhaging from my rectum. Long story short, what couldn't be seen during the takedown surgery was my belly was full of adhesions. I had to be opened up again, like the first time, adhesions cleaned up, but no temp ostomy as the pouch was working.

It can be discouraging to have setbacks, but hang in there! I wish you a speedy recovery!
L LjzMember
Just to update and share good news....I had my takedown 8 days ago and all went well! My surgeon was surprised that there were no adhesions, despite all the blockages I had after my j-pouch was made (#2 surgery). Had pains all week in hospital, most likely due to swelling at surgical site. Surgical team and GI nutrition decided to leave in PICC line 2 weeks just in case of blockage or me not being able to eat or drink enough. Anyway, home now after week in hospital and eating with minimal pain! Yeah! Still dealing with frequent and liquid stool, as well as the butt burn associated with it, but I know it's early and feel things are way better than I expected! Will probably go back on Imodium after my post op appointment in 10 days. Thanks to all for support and sharing your stories, as they have and will continue to prepare me for this journey!
LJZ

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