Concerns about weight and adjusting to new digestive system after ileostomy reversal

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jodelin
May 02, 2013 8:42 pm
I had an ileostomy since January 2012 due to cancer. It is a temporary one, but I had an anastomosis leak in my pelvic area, so it was hard to fix. I just had surgery to put some of my stomach muscle around that part of my colon, and they were able to close up that pocket. I am scheduled for a reversal on May 22. I am very excited but have a few questions. I have never posted on this site but have been reading here several times. Love this place, great place for information.
Anyways, I am afraid of weight loss or gain after the reversal. I had issues gaining after chemo and radiation, so I just want to know if I should prepare for that. The doctor said to gain weight. Well, sometimes that isn't so easy.
Also, has anyone adjusted to their new digestive system quicker than the standard 2 - 6 months? My tumor was low in the colon, in the rectal tissue part of the colon. I'm missing about a foot of colon and about 5 feet of small intestine due to mass caused by radiation. So, I have a lot of my original parts left.
Any ideas on how to make adjustment time quicker and possibly easier? Nothing about this whole ordeal has been easy yet, but a girl can still hope, can't she?
iMacG5
May 02, 2013 9:29 pm
Hi jodelin.  We're all different.  Our healing processes, tolerance to pain or discomfort, reaction to chemo, adjustment to our new selves, and the help we have around us differs. You're probably in the best place to get opinions and guidance.  You'll probably hear from some who's experiences are very similar to yours.  I think reaching out is a healthy sign. Maybe post again in the Ostomy section.  Wish you the very best.

Sincerely,

Mike
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jodelin
May 02, 2013 10:53 pm

Thank you for the best wishes and taking the time to help me. Not a common thing, so not very many answers just floating around. Well, I have never heard of ostomies until they told me I had cancer. But then, I don't even watch the news as I don't like bad news.

WindyCity
May 07, 2013 2:49 pm
Hi, I'm sure this hasn't been easy for you. I think the only downside, considering what was removed, would be that you might have more bowel movements than before. Gaining weight after chemo and radiation would probably be different than after the stoma reversal. If you can tolerate it, drink an Ensure after every meal. There's also an Ensure fruit juice, and be mindful that you need extra calories for wound healing. I'm sure you know that it takes time to adjust, the bowel movements, and also your food tolerance. Some people start slow on the BRAT diet after the reversal. You will be just fine and will have a bright, shining outcome!! Best of wishes!
vikinga
May 07, 2013 5:04 pm

Hi there,
I would like to know how many kinds of reversals are there? I have an ileostomy. Total large colon gone except for the 6 inches at the end. Is there only a J-pouch option?
Thanks gang!
Lisbett

 
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WindyCity
May 07, 2013 5:36 pm

My colectomy included removing everything....ascending, transverse, descending, and sigmoid. I still have my rectum. It is considered a 'rectal stump'. I have an ileostomy. The initial connection didn't sustain, resulting in leakage and an emergent ileostomy. My rectum is NOT affected by disease, so I can be connected from my small (ileum) to my rectum. In cases where the rectum is affected, such as UC/large rectal tumor, a JPouch would be an option.

vikinga
May 07, 2013 6:41 pm

So am I to understand that a reversal is possible in a case like yours (me too) without using a J pouch?...by just connecting the ileum to the rectal stump?

Casey & George
May 07, 2013 7:13 pm

They weren't able to reverse mine because of adhesions and scar tissue. I don't think they tried hard enough. I am missing about 2 feet of small intestine and part of my transverse colon. Since you don't have a large intestine to dry out the output, are they going to give you something to slow stuff down? Before my second surgery and colostomy, I was going about 20 times a day, very inconvenient. Now I still have to empty my bag about 6 times. I hope your surgery is successful.

WindyCity
May 08, 2013 3:44 pm

Yes, it's called ileo-rectal anastomosis. The rectum, being not man-made like a JPouch, performs better. Through case study, the bowel movements are less than those of JPouchers. Ileo-rectal anastomosis' bowel movements are normally 4-6/day and JPouchers are more. Also, control is an issue until the pouch performs like a rectum would. Don't know what disease you had and if this is an option. I too have adhesions which hospitalize me from time to time (small bowel obstruction.) Thanks for the wishes, but my operation led to possible underlying issues, even beforehand, and I think I should leave things the way they are.

bag_n_drag
May 08, 2013 4:40 pm
WindyCity - I had an ileo-rectal anastomosis 15 months ago. I lost all my large intestine originally and had a bag for about 15 months. The reversal was done last February 2012. The doctor did sew my small intestine to my rectal stump. I had frequent accidents in the beginning, especially at night. At the one-year mark, my rectum and small intestine have learned to hold a bit more water, and things are pretty controllable now for the most part. I do take Tincture of Opium and lots of fiber pills to bulk up and slow down. Lomotil causes too much water retention in those parts and actually encourages accidents for me.

Nighttime is still an issue at times, especially if my stomach is upset or I have cramping in the small intestine before bedtime. Things also get worse if I get sick. I cannot digest anything long-acting, medication-wise, which makes taking pills difficult at times. I still have trouble with certain foods, too, such as lettuce, broccoli, cauliflower, asparagus, corn, and red meat.

All in all, my reversal has been a success, and I would do it again if given the choice. I consider myself both fortunate and blessed to have been able to have a reversal without a J Pouch and have it "stick!" If I ever have to revert to a bag again, I will also be happy just to be here and live my life to the fullest! I've been both places now and know that I can make it either way!

Hope this helps.

Darla
WindyCity
May 14, 2013 3:45 pm
@Bag n Drag,
Thank you for your kind words, reaching out, and sharing your story. It is truly inspiring and amazing. Many reversals are successful, and you are one of them. I'm on another support group. There are not many ileo-rectal anastomosis members; it's primarily JPouchers.

I'm happy for you that, in time, your small has adjusted. I've read that sometimes Lomotil encourages more liquidity, so I'm glad to hear that supplementing provides the normalcy you deserve. And being on a diet refraining from foods that upset you is best. Some doctors state "eat everything," which isn't always true.

Again, I'm glad to hear your story; it is comforting. On the other hand, it's my case that is not definite. I don't know if the worst is behind me. If it is, then I'll reverse it. I'm afraid that the worst is yet to come, and surgery might erupt something again. I still have time to determine, and knowing your story of success provides me HOPE!

Thank you, and I'm sure others reading and on the fence will thank you too!
vikinga
May 14, 2013 4:52 pm

How can they know that the rectal stump is not affected by UC? Is there a test for that?
Also, I came across a very interesting website on nutrition and how it affects us. There is a very interesting section on UC if you search for it. The site is NutritionFacts with an org at the end.
Vikinga

bag_n_drag
May 14, 2013 8:27 pm
You are most welcome.  Yes, I remember the vacillating that I did prior to the reversal.....ok, leave well enough alone......noooo.....ok, go for the reversal.    It is not a minor decision by any means.    I postponed my reversal twice before finally taking the plunge and, in retrospect, that was probably wise for me because my head just wasn't "there" yet and neither was my body!    
I will certainly keep you in my thoughts and prayers.    Keep us posted on your journey!

Darla
jodelin
May 27, 2013 3:08 am
I didn't know about the fruit Ensure. I will have to check into that. I don't like the regular Ensure. But, not really able to eat much since the reversal (not a J pouch). My intestines are bloated from surgery and usage after 16 months. So, can't eat much yet or it comes back up. Almost feels like a blockage but there is no problem going to the bathroom.
Definitely have to do that a lot. Swear by Calmseptine, soothes the agony the bottom suffers through.
I am doing the BRAT diet. Boring but much safer than other options. Thank you for your assistance.
I love not having the bag, but still adjusting with the stomach pain and frequent bathroom visits.

This is in reference to other notes on this reply regarding the attaching to small intestine - my dr wouldn't do it. She is a Colorectal surgical consultant at Mayo in Rochester, MN. But, I do know of someone that has had it done. He hardly eats when out of the house as his food doesn't stick with him long. But, I am happy for him he was able to have it done.
I wish you all the best of luck with whatever it is you are hoping for.