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Hy everybody. I'am 3 months after my 1st stage operation and now I am waiting for the date of my takedown operation. I didn't have any problems with my ileostomy,blocages,
eating but I have lots of problems with loosing weight,low pressure,nausea,dizzines, low electrolytes and it was so bed I was in hospital for 23 days getting blood and infuzion,four bottles every day during my stay. Now I am so weak and tired of everything I we been struggling with my UC in very bad stage for almost 2 years now. I have read all off your post about takedown surgery and what to expect after it and I am very frightened. I am near to give up but I can't imagine to have a bag for rest of my life(I am 37 ).
Did anyone feel like this?
Thanks
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Yes.  Me.  But hang on.  The healing is slow but you will get there.  Lots of battles.  Takes a long time.  Think positive and let the time pass to heal.  This is very traumatic surgery.  It took me 9 months after surgery to get back to work.  It was tough.  11 months back and I still have my struggles.  I lost 50 pounds and still have only gained half back.  I think positive even though the bad times still.  I will not give up.  You shouldn't  either.
We all bounce back differently.  Some come right back.  Some don't.  My surgeon said 18 months.  She was right.
It will take me even longer.  I know that.... I figure for myself two years plus.  But.... Every week it gets better.  Slow as it seems.  It is better.  At one point I just wanted to go to sleep and not wake.  That's how bad it was for me.  I never thought it would get better.  I was wrong.
Just do it.  That's why you went in the direction you did.  I didn't  have the time to have a real "takedown".  Two emergency surgeries and they took the bag off and hooked me up in less than a month after the original colon removal.  And that was tough.  I was in the hospital 8 weeks.  Last two to monitor me cause I didn't care and if I was sent home I would have gave up and whittled  away.  So if I can do it you can too.
Sorry for the ramble and being blunt.  But you have to be tough and not give up like I wanted to do.  Get some support from family and you Dr's.  It will help.  Time is on your side.
P. S.  I was 58 when I had my surgery.  You are young yet.  That is a positive for you.
Last edited by Mysticobra

It’s completely normal to have concerns and fears about an upcoming surgery considering what you have been through, but try not to dwell on it.  You are more likely to hear the hard luck stories on this board rather than from those who experienced minimal problems and do not come here to tell about their experiences.  My experience was rough, but my family was there to support me during my recovery.  I was soon back enjoying life, putting back lost weight, eating normally.  It was such a relief to be rid of the bag I had for 4 months and not get it back.  Hang in there, and best of luck to you on your upcoming surgery and recovery!

Thank you all for your replies. I just hope everything will go well and after 2nd surgery I will have as little complications as possible. I already bought cream for butt burn,probiotics, cotton towels,toilet paper without any additives. I prepared myself for sleeples nights and lots of inputs during day and night. Becouse I already have constant nausia that is not a problem....And oh
yeah I almost forgot... I found very easy way to get rid of nausea. When it starts I drink few sips of tea and immediatly eat 3 salt crackers. And I am fine for hours.
Very easy butt effective.
It's important to keep hydrated in the first few months after each surgery. Sounds like you are dehydrated often. I would regularly make a home made electrolyte drink on the doctors advice. The one I used was the St marks electrolyte mix.

As for post takedown I had a very horrible first month and then things just got better over time. 3 months post takedown and I am now feeling great

Yes, it sounds like dehyrdation issues.  Unfortunately a lot of people either don't get or underestimate the need to be very careful with hydration hygiene and, as a result, their bodies suffer.  Once the colon comes out the entire hydration ballgame changes, and you have to adapt or else feel sick and fatigued a lot.  That is really the bottom line.

 

Even after you are "out of the woods" and your body has somewhat adapted to the J Pouch, you will still be prone to dehydration if you get sick or run a fever, engage in extreme physical activities or suffer food poisoning or gastrointestinal bugs.  I have actually passed out cold on my feet a few times due to being dehydrated and was in the ER a couple times already with it.  Lessons learned the hard way, now I know.  Sometimes you need to be slapped by your body in order to get it, and judging from the posts I have seen here over the years, sloppy hydration hygiene is actually fairly common.

 

Take a look at what your house flowers look like when you don't water them for a while.  That is what happens to your body as well, when it lacks water.

Last edited by CTBarrister

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