Clarification?

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Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 3/14/2008 7:57 AM (GMT -6)   
Hi folks- so lately I've been reading the posts, thinking, & I'm a little freaked out. It seems like there are a lot of problems lately- Cecilia in the hospital with the kink/blockage, Jan with the dehydration issues. My surgeon told me that there are no dietary restrictions with an ileostomy- yet others on here say "No, you do have to be very aware of what you eat, what slows down or speeds up output." The thought of eating without worrying about the repercussions is a big factor in my decision to have surgery. I guess I'm just worried about opening myself up to a whole host of other possible medical complications. What are the chances that one will have these problems? And overall, do you find your ileostomy to have complicated your life or made it easier, day to day? Do you really have to police what you eat or drink to make sure you stay well? The doctors tell me it's all good, that it's a cure for UC... but is the cure possibly worse than the disease? I can't believe that.....Please help! Thanks!
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 3/14/2008 8:56 AM (GMT -6)   
Okay, you need to keep this all in persepective. Most people that visit HealingWell are having problems/questions with either their UC or their ostomies. The thousands of others who are not having UC problems or surgery complications are not posting here. Any surgery comes with the possibility of complications. This surgery is no different. However, that does not mean that complications don't get resolved, most do. As for food, I never had a problem with food with my temp ostomy but I was also not eating a lot of troublesome foods and I only had it for 8 weeks. With my j-pouch I have not found a food that doesn't agree with me and I think if I had opted for a permanent ostomy the results would be the same.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 3/14/2008 11:30 AM (GMT -6)   
Yeah, it's kinda like being "normal" in a way - People without Ostomies, without UC, with Crohn's - they can even have foods that bug them. When I had UC pretty much EVERYTHING was an issue. No only a couple things are: Orange fibers, and popcorn. I perosonally think that GREAT. A lot of "normal" people can't east one or two things, so I'm even with them, right?
Let me tell you, as far as I am concerned, even with the couple of little issues, life is WAAAAAAAY better with my ostomy. A gazillion times over. The issues I have had are absolutely trivial compared to what UC did to me. Now, this of course is my personal experience, but I think many share my opinion.
I do not watch what I eat. At all. I just don't eat orange fibers or popcorn. Other than that I eat and rink to my heart's content. And remember, some people who watch their diets more closely may have Crohn's, and an osotmy is NOt a cure for that, so they may continue to have problems. Same for people with constipation.
The day to day workings of the osotomy take getting used to, but then they too become just a part of your routine. You're a girl - I compare it to this. You have a routine you go through with your period. It may not be fun, and it may not be pleasant, but after the first few times dealing with it, you get used to it, you use what types of products work for you, and pretty soon dealing with it is just routine. That's what the bag is like.
If at first you do not succeed, then skydiving is surely not meant for you.
 
Jo - UC, total colectomy,ileosotmy on August 24, 2008.


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 3/14/2008 1:23 PM (GMT -6)   
Ok, I'm feeling better about it all. I know that there are risks involved, & I also know that my life will most likely be a million times better/easier with an ostomy. It just scared me a little, hearing all the bad things. But i do have to remember all the good things too! I have no intention of not going thru with surgery, but I just don't want to find myself worse off or regretting the decision. And even if I do have to be careful of my diet, I am now, & it can't be worse than it already is. Thanks AGAIN!!!!

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 3/14/2008 4:08 PM (GMT -6)   
Eva,

I think Sue made an excellent point -- keep things in perspective. Most of the folks that already have ostomies and are doing well and don't have any problems or questions are probably not visiting this Ostomies forum. So you are hearing "stuff" from those of us that are having or have had appliance issues or surgical issues or even food issues, any questions at all. All very good topics that someone else here most likely has an opinion or answer to.

Yeh, I agree that this ostomy I have now is truly a blessing and I would not even think about going back to my life PRE ostomy. I had CD, and had several surgeries for resections and even a temp ileo. And that in itself can cause adhesions. Everyone who has any type of surgery, as I understand it, is susceptible to adhesions. It is just scar tissue. Sometimes, scar tissue can cause problems. There are no explanations for who, why, where.... I'm sure if those of us that have had a "kink" in our intestine or problems with blockages due to scar tissue could change our life or diet or whatever to avoid it, we sure would. We are just the lucky chosen few!!!

I have met so many nice people on this forum who have so many good questions. If anything I have experienced in my past can help anyone else, I want to share --- just an awareness thing. That is not saying that it will happen to you. I didn't have such a wonderful group or knowledge base to pull from when I experienced some really scarey things for me right after I had ostomy surgery. I had to call my surgeon's office, TRY to get a return call from a nurse to get my answers. You all know about that. How nice this website would have been for me then. And, I didn't take the initiative to do much research about an ileostomy or anything related to the surgery or appliances prior to my permenant ileo surgery. At that time, I was young and guess that it wouldn't matter if I knew about it or not - I was still eventually going to have to have it done permanently. I guess I just was being an ostrich with my head stuck in the sand!! Didn't work at all for me! lol

Sorry for rambling. I just hope that I haven't scared anyone needlessly. That certainly has never been my intention.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 3/14/2008 4:31 PM (GMT -6)   
eva,

if uv seen my pre-surgery posts, then u know how absolutely freaked i was b4 surgery. I was fighting completely. Did not want it, thought i could live thru the pain, but it became unbearable. I went in the hospital preparing for the worst. Reading some of the complications had me kinda spooked too. But sue and joe are right, people posting here are posting b/c of complications and questions most of the time, and the routine does take getting used to but its not soo bad. I went in the hospital, was only in for a few days, stoma worked immediately, havent had a real leak as of yet, and have been able to eat just about n e thing ( was never a fan of popcorn or nuts n e way). So it takes getting used to, but its manageable, not nearly as bad as i thought it would b. And if i can say that....thats a big thing, b/c i was fighting this thing tooth and nail, i dont think i've ever cried as much as i did b4 this surgery.

p.s. now lets see if i still feel this way after i go back to work next week :o/ lol
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 3/14/2008 5:39 PM (GMT -6)   
Really you just have to be on a low residue diet for the first couple weeks after surgery and slowly add foods to figure out how well you can tolerate. Even if a food upsets you right away it doesn't mean that it always will, just try again later. I eat just about anything, the main thing to stress is to chew your food well. As for the hydration, drinking water is important as we no longer have a colon to absorb the water, but the issues that Jan is dealing with is an exception rather than the norm. People without UC or CD can get blockages, kidney stones etc.

Are you having a perm ileostomy or a pouch created?

My first surgery went well and the ileostomy/stoma gave me no problems, no leaks and I truly felt better without the nasty medicines I was taking before and was able to gain back 20 lbs out of the 30 I had lost in 5 months. It is what most have with a permanent ileostomy.

The second surgery in creating the pouch, I now have a loop ileostomy which is a little harder to manage, but I still work and eat everything that I did before, just have to snack on more pretzels when I drink because the ileostomy is higher up in the small intestines.

Each surgery/step has a risk or obstacle to overcome and although I don't think I can ever say that I'm glad that I had the surgery, (I wish I never had the disease to begin with) I am glad that we have the options that we do in order to save our lives. Because that's what the surgery did for me. The cure doesn't even come close to being as bad as the disease.
Theresa

Originally diagnosed with CD in 1991
Only one serious flare up in 1998 and again in July 2007
Total colectomy August 2007 now saying "Undetermined Colitis"
2nd step J-pouch formation -January 2008
Takedown hopefully by April 2008


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 3/14/2008 6:15 PM (GMT -6)   
I'm opting for a perm ileostomy- they just seem to be the more less complicated of the surgeries. And jeez, no, no one on here has EVER scared me! I don't mean to give that impression- I think I am probably more freaked out than I'd like to think about surgery. I am looking forward to it in so many ways, & know I am doing it the "right" way- going into it fairly healthy, not on 'roids or Remicade, & able to plan the stoma location. I sort of feel like you did, peggy, when you say you figured you'd learn it eventually- sink or swim, ya know? It's a scary thing. But I am SO extremely grateful for the info & advice you all give me! Honestly, it's made it so much easier to make the decision, with friends like you all to back me up. Aaahhh... I'm feeling all teary-eyed!

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/14/2008 7:30 PM (GMT -6)   
it is much easier than you think it is, once you get it and start using the bags and all, after not too long, it will become second natre, and a good bit of hte time you won't even remember it's there. As for food, i eat whatever, i just chew everything good, and with things like oranges i spit out the fibery parts. You may find that there are some foods that can give you more gas, that's something you just have to figure out if you want to deal with the gas, or just not eat the food.

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 3/14/2008 7:35 PM (GMT -6)   
theresa, what do u mean ur loop ileostomy is harder to manage?
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 3/15/2008 4:15 AM (GMT -6)   

Praying,

I think what Theresa meant by a little harder to manage is that since the ileostomy is formed from intestine a little higher up in the tract that her output may be a little more watery, hence a higher risk of dehydration which is why she probably has to snack on pretzels and such to increase her sodium and help to firm up her output.  Is that right, tbraz?  Just taking a stab at it....

I do not have a loop ileostomy but since I have had several feet of small intestine removed, I am nodding in agreement with Theresa.  But, I have learned to manage it and it just becomes second nature.  It's been so long for me now (24 yrs in July) and I was so sick before surgery, I can't even remember what healthy was PRE ileostomy!!  (Wow, that's a lightbulb moment for me!) 

Different foods do thicken my output up and I try to pay attention and use them to my benefit.  It not only makes bathroom trips fewer, but it also allows my body to absorb more nutrients and fluids, etc from my food.  And, it doesn't stop me from doing anything that I want to do usually, except I will have to admit that I was really uncomfortable with the thought of doing jury duty ---  


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 

Post Edited (peggy113) : 3/15/2008 4:19:05 AM (GMT-6)


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 3/15/2008 6:44 AM (GMT -6)   
Peggy

You are absolutely right about the loop! What I guess I was trying to say is that the first ileostomy which is the same as the one's for permanent is easier to manage. And the loop, which can be more output is only temporary.

Having had both, I know I will be fine if these surgeries don't work out and I have to go back to a pemanent ileostomy because it is so much easier to manage.

Thanks for clearing that up
:-)
Theresa

Originally diagnosed with CD in 1991
Only one serious flare up in 1998 and again in July 2007
Total colectomy August 2007 now saying "Undetermined Colitis"
2nd step J-pouch formation -January 2008
Takedown hopefully by April 2008

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