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Hi everyone!  Just joined this group. Would love some advice on preparing for my upcoming reversal surgery.  Had colon removed,j pouch formed, and temp loop ileo done in May. I am scheduled for a gastric enema coming up. What kind of prep did you do? The one they told me does not sound right for someone who's not currently pooping out their colon.  Also those who had this done, were you able to put weight on if you had lost in previous surgery? 

 

 

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I was given instructions for a barium enema x-Ray to check my pouch for leaks prior to takedown.  The prep instructions did not sound right so I called the department.  They told me to eat lunch the day before and then have liquid diet the rest of the day until midnight (nothing red).  I also received a call from the nurse telling me the same thing.  So, best thing is to check with them beforehand to clarify instructions.  Remind them that you have a bag.  Not sure what your test will be like but mine was a breeze.  The staff was great, made sure I was comfortable, and well covered.  My husband was able to watch the images with the head radiologist who explained everything to him as it was completed.  I just had my takedown 2 weeks ago.  So although I am not really gaining weight yet, I haven't lost any either.  Good luck!

 

C

Thank you CTB23, I just spoke with the flouro tech and she confirmed I don't have to do any of the prop stuff just to follow the light diet the day before. I'm glad to hear it was a, breeze!! I had a barium enema years ago and thought it would be something similar to that. Although that wasn't super fun it wasn't painful either.  How are you doing with The takedown? I'm not lolling forward took the " butt burn" many talk about but am excited for after one it starts getting better!  glad to hear also you haven't lost any weight. Best wishes and prAyers for your recovery! 

Goofeegutz

Yes there is definitely butt burn, but I have been using Calmoseptine right from the start, brought to the hospital, along with baby wipes and soft toilet paper.  They also provded some soft disposable cloths that came in handy.  I was out shopping today and forgot the Calmoseptine so I did notice it.  The other thing we got was a bidet, which I have been using.  So far, takedown has been not too difficult, actually a little better than I expected.  I guess the biggest annoyance has been the gas-all the time.  Anyway, good luck with your takedown.  

C

Before my takedown, I experienced leakage from a temp ileostomy appliance, all the skin around my Stoma was red raw, oozing and excruciatingly painful, so much so, I was actually questioning whether opting for the J pouch was the right decision..

I tried every cream, powder and concoction available but to nothing worked that is, until it was recommended I use ilex protectant paste.

Once applied, I got instant relief and the weeping, oozing and feasting skin around my Stoma was healed within three days and never to return and I continued to apply the ilex as a preventative measure until takedown.

Since takedown, I've never actually suffered from the more traditional diaper type rash butt burn but I have experience an excruciating burning sensation during BM's, which I believe is an anal fissures and whatever the cause, it's always relieved and healed by the application of ilex paste.

Ilex paste can be applied to treat and prevent the more traditional form of butt burn as well.

FM
Last edited by Former Member

In the US: www.ilexhealthproducts.com

It's available via Amazon.

I wouldn't worry too much about butt burn or be buying a bidet just yet; wait and see if such issues arise that require such treatments or appliance.

Since takedown, other that what I've already described, I don't experience any such issues that require a bidet or any special cleansing routine after a BM.

For the first six months I cleansed with scent free wet wipes, which I still keep on hand but I rarely use them now, unless I've had an accident or on the occasions when I've had to apply ilex, otherwise, I cleanse (wipe) with toilet paper.

FM
Last edited by Former Member

Your situation sounds very similar to mine! I had my colon out 7 years ago, but had my Jpouch made in May with tempileo and my takedown 3 weeks ago. I am a new guy here too.

I had a fluoroscopy exam before my takedown and was very nervous and there was no reason to be. I couldn't eat or drink after midnight that day. They insert a very small tube up your bottom and then liquid from an IV like bag flows in and out with gravity. Completely painless and fast, Hardly can feel it in there.

In terms of post takedown, I have had fantastic results with a bidet. It is a brondell from Amazon for about 40$ that attaches to your toilet. Everyone on this forum raves about calmoseptine and I didn't find it as helpful advice as others. In my experience when you are going often, if you clean yourself, put on calmoseptine and then have to go 5 mins later (which will happen a lot) the poo and thick creme get mixed and then your skin is sealed in with moisture and acid. I initially tried this method and had serious butt burn. The second I swapped to the bidet, it was healed in a day. If you go, completely power rinse your whole area, and pat down with Charmin Ultrasoft (I sometimes even use a hair dryer on low to fully dry) it helps preserve the skin and lets it heal. I haven't had a problem since day 2 when I made that switch. The key for me was clean dry bottom. Obviously my experience and opinion, others have had awesome success with creme, so I would buy both and see what works for you.

I got Depends adult diapers that I have been wearing at night and on certain occasions, just in case. I have had tiny leaks here and there and it is good to have the confidence of the diapers.

In terms of weight gain, I have always been a skinny kid with really high metabolism. I was 135 when healthy and dipped to 115 by my takedown. In the three weeks I have had my Jpouch, I am already up to 125 which I can't believe with my skinny body. I am hungry all the time and I have been chilling this month close to home literally eating all day. I have been doing shakes with boost plus, peanut butter, bananas and avocados, and other high calorie foodstuffs. If you eat enough calories, the weight seems to come back.

The two things I will say about eating is fiber and gas. I was initially constipated and straining all day trying to get stuff out. The fiber works miracles when you have diarrhea or constipation. Simply stabilizes your insides and let's everything flow nicely, I think it is completely necessary to have. For gas, I was initially having a ton of gas that was very uncomfortable and thinking it was from food like dairy, but my doc told me gas is made in the colon, so the only gas I have is from me swallowing air. Really try to focus on eating slow and not gulping. I was always inhaling down massive portions of food, and I am working on eating slow to reduce gas swallowed. It makes all the difference.

Lastly, do your Kegels. I wasn't using my bottom for 7 years because I had a end ileo, but now that mine is back in use, they are tired. I have been fighting some nasty cramps right in my anus, and doc says these are from my muscles getting used to having to hold again. The stronger you get the pelvic floor muscles the happier and less cramping you will have. Expect 4-6 weeks of discomfort in that department.

Overall I have had a breeze of a transition in my experience. I am surprised at how good I feel.. Im not meaning to brag but rather give confidence. I think hearing a good story is reinforcing since most people talking on this forum are experiencing tougher times. The biggest piece of advice I found on here was stay positive and know and accept that the month after (maybe longer) is gunna be kinda sucky. If you can go in with the mindset that it is going to take time and be terrible, it doesn't seem nearly as bad on the other side. I wish you the best of luck and hope everything goes well!!!

FM

Just went for my follow up visit with surgeon today.  Everything looks good!  Going back in a month to check on ip incision site, then 6 mos. later.  At one year he wll scope a ,d biopsy due to a small area in rectal cuff that he needs to keep an eye on.  

He suggested Imodium before going out to eat, just to be safe and also carrying it when traveling.  Also, I may increase trips to bathroom as I introduce new foods to my diet.  Not too concerned.  It is what it is!  So far no complaints!

C

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