life after ileostomy repair

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mom9mom
Regular Member


Date Joined Sep 2008
Total Posts : 489
   Posted 9/16/2008 9:54 PM (GMT -7)   
 Hi. I had a ileostomy in jan of this year from a injury.Thay removed 1/2 of my small intestin.I was in the hospital for 4 months.In the last half of june thay reversed the ileostomy. In july thay found out that I have a infection in my spine.I have to take a intravenous antibiotic (cubicin) for at least 12 weeks.I have very bad diarrhea & my potassium keeps going low. I would like to know if anyone knows if this will get better after I get off the cubicin or if this is a lifetime thang. confused I would also like everyone to know how happy I am to finally find some where I can go to talk about this I have been trying to find a website that could give me some ideas about how this will effect my life but every where else I have tryed did not help. mom9

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 9/17/2008 8:42 AM (GMT -7)   
Unfortunately, I cannot help you with your question, is it a side affect of the antibiotic? Your dr or nurse should be able to let you know.

Are you getting enough fluids? I know when I have alot of watery output (diarrhea for me) I get dehydrated and my potassium levels get messed up.

How are you doing with the reversal? Is your system getting back to "normal"?

mom9mom
Regular Member


Date Joined Sep 2008
Total Posts : 489
   Posted 9/17/2008 12:28 PM (GMT -7)   
yes my body is doing good with the reversal and I love not having the bag. I had a hard time with my bag coming unstuck and making a mess so I was glad to get rid of it. When thay first did the reversal I had to go every half hour and it made me fill sick but now  its 5 to 10 times in a day. Some days are better then others. I still need 2 or 3 surgerys in about 6 months and somethangs are never going to be the same. That gets me down some times but I came very close to dieing so I just have to be happy that I am still hear. Thanks for writing me back rolleyes

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 9/17/2008 4:22 PM (GMT -7)   
mom9mom,

This forum is such a wonderful group of people -- it seems like someone here out of all of the many members is able to help most all of our visitors in some way or another. At least point them in the right direction where to find the information or what questions to ask or where to look. When I joined I had a leakage issue after many, many years of no problems. I found out about a new method (to me, anyway) and issue was solved. Just that easy. I hope you will find that this forum will help you as well.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 9/20/2008 5:20 PM (GMT -7)   

Mom9,

Once you're done with the antibiotics, the diarrhea will stop and your potassium levels will increase. In the meantime, you can eat yogurt and take Acidolphilus tablets every day to give your intestines the good bacteria back. Eating bananas and potatoes and drinking orange juice are good food sources for potassium. Taking Imodium will also help with the diarrhea.

Good luck, and keep us posted on how you're doing.

Cecilia


Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


mom9mom
Regular Member


Date Joined Sep 2008
Total Posts : 489
   Posted 9/29/2008 9:57 PM (GMT -7)   
Thank you all for the help.
Lost half of my small intestine, Nerve damage to right leg,part of my right hip bone removed,hernia,infection in my back called discites,and depression


Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 10/1/2008 5:21 AM (GMT -7)   
Low Residue Diet!

Some of the foods mentioned above are on this diet (bananas, yogurt, potatoes, etc.). I had rectal cancer in 1999, 90% of my sigmoid removed, 15 inches of my colon removed, my gall bladder taken out at the same time, a temp ostomy also. After it was reversed, I found myself living in the bathroom. On my good days I made it to a chair in my bedroom. I would have 3 bm's during each meal. The minute I began chewing, I had to go. It was just awful.......during this time I was eating a high fiber diet, all whole wheat products (from cereal, to bagels, to english muffins, to bread, the Brownberry type), fresh produce (all berries, fresh pineapple, etc.). I was a MESS!

Then I found a colon cancer board and a member there suggested going on a low residue diet, to relieve D. And constant bm's.

I went on the LRD and within 48 hours of eating foods only on that diet, I was literally a new person. Now I did have many, frequent bm's (I always will, that's a given now, since my sigmoid is just about gone) but at least the stool was formed and easily passed each time. I am still on this diet about 75% of the time, 9 years later. It is quite simply the way I have to eat now. My doctor approves of this diet as well. The alternative would be to eat high fiber and then never interact with the real world again. No thanks.......the foods on it are not so bad but my husband does joke it's my white diet - most are white foods. Oh well......I have a sister-in-law who won't eat any white food (she's trying to lose weight, she's in her mid 50s now....my husband laughed and said, hey that's your diet Mary!)......but again, eating this way for me now has just become a way of life (and also knowing where all the bathrooms are, at the mall, grocery store, library, public buildings, etc. I usually search them out before the need to use one).

Do a google search, you will find many, many links for this diet.

The foods that have helped me the most on it are:

Bananas
Vanilla flavored yogurt (skip the type with fruit on the bottom, I just buy Stonyfield in large tub sizes now)
White rice
Instant mashed potatoes or real ones (but for some odd reason, instant can really soothe my gut)
Applesauce
Club Crackers (with salt, the regular type)
Cottage Cheese
Roast white turkey or chicken
White fish (or salmon, salmon doesn't mess me up)
Bay's plain english muffins (found in the refrigerated section, near cream cheese)
Plain white bread, toasted (local bakery type is the best, but I know the least nutritional for us)

I would also suggest you keep a food journal. Just one page for each day is enough. Write down every single thing you eat and drink for that day. Also record any medications you take. After a while you will see a pattern form.

Avoid chocolate, candy, nuts, any high fiber food right now. Also any fresh berry fruit - run from them! They are very nutritional for the vast majority of us, but filled with seeds, that can aggravate a GI tract.

As always, please check with your doctor to see if this diet is safe for you to follow.

But it did save my life. First my doctor saved my life from cancer, but turned it upside down in the process, almost literally. Thought I'd be confined to a toilet for the rest of my life. In many ways I still am (I have anywhere from 12 to 20 bm's a day but my entire goal has been to keep the stool formed, not D, not messy and easily passed anywhere, in malls, in public, while in people's homes, etc.). This diet and a mild stool softener help me the most.

It is shocking when I tell people how often I go in a day's time. But the stool each bm is very, very small, spaced out over a day, not in one big dump, as it used to be.

I also try not to eat after dinner. Giving my gut a break from solid intake, so it can quiet down. I then resume eating by 7 each morning. So in a sense I eat for 12 hours on (4 to 6 small meals a day), then 12 hours off.

I've been doing this for 9 long years so please feel free to ask any questions you may have.

Mary/marsky

mom9mom
Regular Member


Date Joined Sep 2008
Total Posts : 489
   Posted 10/2/2008 11:50 PM (GMT -7)   
tongue  Marsky thank you for the diet. I eat alot of these items already.But I also have to eat alot of protein.I also love salad,I know that when I eat salad that I will have to pay for it for a couple of hours so I only eat it when I am going to be home all day. I now it may sound nuts to some people to eat something that I now will make me sick but I can`t help it I just love them so much.When I still had my ileosamy bag there was alot of things I could not have the two things I missed the most was salad and diet Dr.Pepper.So any way thanks for the tip and I will try to eat a diet closer to yours and see how it go`s
Lost half of my small intestine, Nerve damage to right leg,part of my right hip bone removed,hernia,infection in my back called discites,and depression


life scar
Regular Member


Date Joined Nov 2007
Total Posts : 35
   Posted 10/8/2008 3:40 PM (GMT -7)   

Hi Marsky,

I have only just posted a new thread asking for help then I came across your letter talking about low residue diet.  I had my op for BC in April last year and my Ileostomy reversed 15 months ago, most of the time I am fine but every couple of weeks I have very frequent BMs, in fact reading your letter it could have been myself.  The only thing you didn't mention was a really sore Butt!  mine is so painful I could cry, but it only last about 10 mins.  I put vaseline or rectol cream on it but that seems to make me want to use my bowels yet again.   Is there any foods that you particulary noticed "set off" the BMs.  And how do you control it long enough to even make it to the loo?  I have had several "accidents" and it is so embarrassing even though they have only happened at home. blush

What a God send this forum is...with so many wonderful people out there willing to share their experiences with you.

Thank you again Marsky.

Life scar.

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