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Ostomies
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Posted 6/28/2012 2:04 AM (GMT 0)
My colonoscopy before my takedown surgery was not so good. It showed Crohn's was in my small intestine towards the end. Not much at all from the pictures I saw... Looked a million times better than the colonoscopies a few months ago. My GI doc said to wait another month. My surgery was scheduled for this Friday. I was counting down and looking forward to it so much... and now school is postponed for another semester. I really hope to get this surgery over with asap... I do not want to do nursing clinicals with an ostomy... The bag is not comfortable to wear. The adhesive makes me itch and it pulls on my skin. and white shirts with a leak wouldn't be pretty.

I did find eakin rings stopped most leaks. Have only had one (knock on wood) since using them. They are fantastic little things that are really expensive. Thank god for health insurance.

Vacation was... well I love swimming and I had an open wound that was almost closed and could not swim. So being at the beach was kind of blah. I did find I could hide the bag rather well in most clothing. I like having an excuse to go shopping now... as if losing 40 lbs wasn't a good enough excuse. I like to find stuff that I look semi-normal in. I look anorexic compared to my "normal" self... I fit in a size 0. Feel like a 12 year old, can eat pretty much anything I want, and don't gain weight. What a lot of girls wish for... guess I should enjoy it while I have it? My GI doc said I probably won't even see 110 lbs until Thanksgiving... I'm starting to believe him. I might get there if I'm lucky.

Has anyone with Crohns had problems gaining weight after a big flare? How long did it take to gain the weight back? My GI doc said the takedown surgery will slow down any weight gain again. Whenever that surgery happens...

Has anyone that has had a takedown had any problems afterwards? I want to know the common side effects/problems afterwards. Other than pain which is a given...
Posted 6/28/2012 12:14 PM (GMT 0)
Sorry about your surgery being postponed, that's very disappointing. I would, however, encourage you to meet w/a stoma nurse and figure out how to make the bag more comfortable and leak proof for you to wear. Sounds like you are not using the right bag for you if it's so uncomfortable.

If you're too sick to go back to school, that's one thing, but if it's just because of the bag, I'd encourage you to rethink. Remember, some of us have the bag permanently, and we go on w/our lives. Issues w/wearing a bag w/a nursing uniform do not have to be a big deal.

I have not had Crohn's in my small intestine, but I know that it can be very hard to gain weight when the inflammation is there -- the small intestine is where nutrients are absorbed, and if it's inflamed, that blocks absorption. The scope for the colonoscopy can't go up too far in the small bowel, so it can't show how much inflammation you really have there (did you have an upper gi test too?).

Have you tried any weight gain supplements? Those that are elemental are "pre digested" and don't need to go through the small intestine so much.

How much of your colon/rectum did you keep? What kind of takedown are you scheduled to have?

Drag that you didn't get to swim -- I couldn't swim for over a year due to an open wound (it's still a tiny bit open now, but I got the OK to swim in a pool or the ocean, not a lake or pond).

Hope things start getting better for you soon.
Posted 6/28/2012 12:34 PM (GMT 0)
They went through my stoma during the colonoscopy and said about 40cm of my small intestine was affected and want to have another remicade treatment to see how well i do. Bah. Take it out. I have 1/2 of my colon left. They are going to just reattach the large and small intestine back together my surgeon said.

Yes I understand that some stomas are permanent. The surgery was supposed to be done am healed (for the most part) before August. If I can get the surgery in august its going to happen asap...and i can't miss more than 2or 3 days of clinicals. Thats half the wait in school. The other 1/2 is I lost soooo much weight, muscle, and stamina I can't do 9 hr days in the ICU and medsurg rotations helping patients. I also want some time to figure out how the remicade will affect me, how well it will work, and get back to life and enjoy it. Since November this stuff has been nonstop and a break would be fantastic.

I'm thinking about the stoma nurse. I was doing fine for about a month until last week. Then the bags decided not to stick as well again. I don't get it. Something will work for a month and then not work. I wasn't really worried about it because I was going to gwt the surgery <sigh>

How do you shower with a bag btw? I won't do a full one everyday bc i hate the feel of wet plastic and press and seal only does a hald decent job for a bird bath.
Posted 6/28/2012 1:10 PM (GMT 0)
I'm not sure whether you've lost the weight since or before surgery, but losing weight could definitely change how the pouch sticks (gaining weight too). A change to summer weather might have affected things too. How far out of surgery are you? Is your stoma still shrinking? Could you be cutting the hole too big?

Makes sense that if surgery was coming up soon, there was no need to get everything figured out w/the bag.... but if one visit to a nurse could make you more comfortable this month, could be worth it.

Have you tried sure seals? They are a clear plastic that goes around the outside of the wafer (like the tegaderm they use for iv's). They help hold the wafer down, and they also make things more waterproof. I always wear them, and I shower, take baths, and swim without doing anything else extra. My pouch has a cloth-like cover, and it doesn't bother me when it's wet. I also have a pouch cover that's made of terrycloth that I put on after getting the bag wet, it dries it in a few minutes (a washcloth works too, just harder to keep on).

So sorry that you're so sick -- Crohn's can be an awful disease. It makes sense to take time to let your body heal and get your strength back. When it works well, remicade can be like a miracle drug, hope it goes that way for you (I was in the hospital for over two weeks when IV steroids weren't working for me.... was very reluctant, but I took the remicade, and started feeling better in less than a day....)
Posted 6/28/2012 3:48 PM (GMT 0)
Hey I am a nursing student too! I had to take a semester off due to having 3 surgeries in 32 days. I am back at clinical now with my bag. I am so busy during school I forget it is even there. We wear white scrubs also. I wear an ostomy wrap and a couple layers of tank tops just in case I did have a leak.

Don't rush the next surgery! I am waiting until after I graduate for my final surgery. Having to withdraw again due to complications would have been awful.

I second the sure seal. I am able to wear my wafer for a week because of them.
Posted 6/28/2012 6:05 PM (GMT 0)
I should have graduated in december to be an RN... I was four weeks away from graduation when I was hospitialized... This was my first flare of this crap and I lost half my colon already. How do you handle the stress? I def did not stress about school like the other people did but i'm the one who got sick. It was prob everything else going on on top of school like our house flooding and a list of other things that helped this stuff progress like it did. My docs said i was one of the worst cases they've seen. I don't like being on that list.

I had 3 surgeries within a month too! I'm not waiting on the surgery. I can't. The bags irritate my skin to no end bc its sensitive. Annnnd as of this week i've had 3 changes in the past 3 days due to leaks. And my skin is lowing red its so angry... Ugh. I just ordered supplies and the supplier changed my eakin seals to a takier kind people have said that have used it compared to the ones i have now so i'm crossing my fingers that does the trick and I only have to wait til the end of july for this last surgery....

I do want to get some weight back on and build my strength and stamina back up for clinicals. I don't want to drop out bc I can't physically handle it not bc i'm sick this time.
Posted 6/28/2012 10:19 PM (GMT 0)
I was suppose to graduate in August and I am now on track to graduate in December. Nursing school is stressful as it is and to have to go through health issues on top of it makes your stress level go through the roof. For stress, my family really helps me. Talking to them on the phone lifts my spirits. Having a good support system helps tremendously.

My clinical coordinator has also been very supportive. If you talk to the school they will understand if you have to take an easy for your first couple weeks. Let them know what your limitations are.

I was never an overly stressed out person either. I don't try and figure out why I got this disease. It just happens. I too, lost a lot of weight after each surgery. I know this isn't the healthy way of doing things, but I drink a lot of milkshakes and eat everything in sight. It works :)
Posted 6/29/2012 2:05 AM (GMT 0)
Haha i do the same thing only it doesn't stick lol. It's taken me 3 months to gain 8 lbs. i've kind of accepted i'll be extra tiny for awhile and started to buy clothes that fit better. As for my school... They have been anything but helpful to me since this started. Im actually considering getting a lawyer for a situation with them. For a nursing and health science college they have no lenience for medical issues or events in life like a death. They gave me an F for clinicals bc i couldn't finish not an I which it should be... So now i have that against my GPA. Grrr. Theres much more than that.

It is so nice to know that someone is/has gone through the same thing as i am. Im not happy it happened to anyone else but its incredibly lonely with these issues out of everyone i know.
Posted 6/29/2012 3:58 PM (GMT 0)
I can't believe they gave you an F. I would try and speak to someone higher up at the school such as a dean. They can't hold medical issues against you and after you have surgery they have to respect your limitations.

Have you tried weight gainer supplements like body builders use? Once you start feeling better the weight will come back. I feel lonely at times too. People try their best to try and make me feel better but they don't understand what it's like. I use to run marathons then got sick very suddenly. I like to think that everything happens for a reason. We will be better nurses because of it. We know what it's like to be sick/in pain/bound to a hospital bed.
Posted 6/29/2012 4:49 PM (GMT 0)
I did speak to the dean. Its 'against their policies to give an I.' Thats some crap right there...
Yes i can see being a better nurse because of it. Idk if im ready to deal with everything i'll see yet. I'm not ready to deal with someone else's ostomy quite yet.. I want some time to just not be sick and living At the docs office.

Yeah I was down and out in less than a month. Nothing but hip pain amd ulcers in my mouth for signs of crohns before the diarrhea and pain.

No one does understand unless they've gone through it. My husband says 'we' are dealing with it. And somedays I just want to scream and say no WE are not dealing with this I AM. I am the one who has an ostomy. I have to change the bag, handle leaks, am uncomfortable, my body is so messed up, can't do what i used to... YOU can do everything you always have. Yes he is and has been there, but he doesn't HAVE to deal with the bags, the crohns itself, a messed up body thats weakened. I appreciate his being there everyday the best he can be don't get me wrong. I don't know what i'd do without him. There is just some things that unless its happened to you dont say you understand because you don't. It makes me angry somedays when people say I know how you feel/felt bc they have one bad day or are sick fr a few days, and i just want to say no you really don't. I'm also very very tired of being treated like i'll break like glass. I won't. I'm not special because I have crohns. I won't drop dead tomorrow from it. I'm still ME. I don't want to be specially treated, if I need extra time off or more potty breaks yeah thats diff. I just want to be normal as i can be again. I'd like to forget about as much as I can from the last 8 months amd treating me diff does not help that cause at all.

I should have been in the OR at this moment having the takedown of my ostomy done. Blah.
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