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Crohn's Disease Forum » Surgery » Stoma Subforum » Looking at a permanent ileostomy


 
05-02-2016, 12:15 PM   #1
gschultz
 
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Looking at a permanent ileostomy

Hello I am kind of new to this site.
Things just seem to be getting worse and worse in the area of this crohns business. recently I was referred to the university of Michigan in hopes to get some light shed on my rectovaginal, perianal fistuals. I was scheduled to have a seton or two put in to relieve the pressure and drainage. I was put under and the surgeon went in and couldn't get past my anus because of all of the inflammation. so I had a dilation done and from what I am getting from it there were too many fistulae tracks to be able to put a seton or two in.
to try and shorten this with all of the inflammation in my anus/rectum, sigmoid, and ileum I am left with the decision to get a permanent ileostomy or wait 2 to 3 months to get my latent tb checked out and try remicade again which doesn't sound very hopeful. dr. said it would be about a 30% chance the remicade would work.

I'm leaning towards going for the ileostomy. I have 2 kids ages 5 and 6. I need to keep up with and cant do that sitting in the bathroom in pain. my life revolves around the porcelain throne, pain meds, and lots of pain.

I know I have missed a lot of past things like medications. all past medications have failed and I've been on everything. also have already had 2 surgeries the last one being 3 years ago.
any input from people that have ileostomies or any input on a similar situation would be great to talk to. I have so much going on in my head right now that some conversation with my normalcy would be great. THanks!
05-02-2016, 01:05 PM   #2
KarenC
 
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Hi...I also am fairly new to the site although not new to Crohn's. Can't help with your questions about ileostomies--and know there will be people here who can. But I did want to say I think you are in good hands at University of Michigan. They have very knowledgeable folks who are researchers as well.
05-02-2016, 08:39 PM   #3
Crohn'sFor Life
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I have a permanent ileostomy. Best thing I have ever done. It gave me back my life.
If I could do it all over again, I would have had the surgery in the beginning... And save myself from years of pain and suffering.

Last edited by Crohn'sFor Life; 05-03-2016 at 07:05 PM.
05-03-2016, 05:42 AM   #4
Eridon2002
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I have a temporary one. I feel the healthiest I have in a decade. Took a while to get used to it and the pain of surgery to subside (and get the bag application downpat). I'm not scared if in the future I have to get a permanent one. I'll take the ileostomy over pain and exhaustion
05-04-2016, 11:56 AM   #5
gschultz
 
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Thank you! I know I am doing the right thing and will feel so much better. I am just waiting on the date to get scheduled so I can get it done. the longer the wait the more emotional I think I am going to be about it.


when you all had yours did the surgeon completely open you up? how were the scars? I have a few scars but am not looking forward to being completely opened, and I am hoping that he can do it through the scars that I already have.
05-05-2016, 02:34 AM   #6
Crohn'sFor Life
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Six inch cut from my bellybutton down and 4 little holes. It is not so bad.
05-05-2016, 04:35 PM   #7
VeganOstomy
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I've lost nothing (other than my colon) by having my stoma surgery, but gained everything from it.

It is important to know that an ostomy is not a cure, especially with Crohn's disease, so be sure that your surgeon / GI gives you all the details.

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05-10-2016, 01:31 AM   #8
Tommy21bn
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Hi

Just thought i'd add my pennys worth and say that having a stoma is one of the best things that has ever happened to me. The quality of life I now have is a vast improvement on the previous bleeding/pain that I had suffered from.

Having yourself re-plumbed is a scary thing to contemplate, and it's not without it's potential complications, but along with effective medication for the remaining Crohns symptoms it can really make a drastic difference to your quality of life. My advice is to go for it.

All the best

Tom
05-10-2016, 02:43 AM   #9
Grotbags
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I've had a permanent ileostomy for 18 months after a lifetime of severe Crohns, it's honestly the best thing that could have happened.
I've been lucky in that I now have zero Crohns symptoms and don't need any medication although that could change.
A positive attitude is key to living with a Stoma, I've seen so many people struggle because they can't accept what's happened, but if you can get past that, life does go on as normal, if not better.
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05-11-2016, 06:55 PM   #10
Tubes
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I had a temporary one in 2004 for 6 months.I hated it cause I was 22 at the time and it was too much of a change for me at the time.They Gave me a J-Pouch that was nothing but problems and I was constantly sick and in the hospital after about a year the J-Pouch burst and caused lots of damage and causes me to have multiple surgeries and I ended up with a permanent illeostomy.I still have a ton of issues but they have nothing to do with my ostomy and it saved my life.If I could go back to my 22 year old self I would have never gotten rid of my ostomy.
05-11-2016, 06:59 PM   #11
Tubes
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Thank you! I know I am doing the right thing and will feel so much better. I am just waiting on the date to get scheduled so I can get it done. the longer the wait the more emotional I think I am going to be about it.


when you all had yours did the surgeon completely open you up? how were the scars? I have a few scars but am not looking forward to being completely opened, and I am hoping that he can do it through the scars that I already have.
What amazed me was when I had my colon removed in 2004 I have a huge scar from my whole belly to my waist.Probably a year or year and a half later my surgeon would have me talk to the younger people that have similar surgeries and I couldn't believe who much smaller the incision scar was for the people I talked to.
05-12-2016, 02:55 AM   #12
Grotbags
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My surgeon tried to do mine keyhole but had to open me up to get the last bit, my scars almost invisible, they heal very quickly but I was paranoid about it for a few days.
05-13-2016, 09:54 AM   #13
Dukeis
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when you all had yours did the surgeon completely open you up? how were the scars? I have a few scars but am not looking forward to being completely opened, and I am hoping that he can do it through the scars that I already have.
I would think it could be done laparoscopic. I had a total proctocolectomy 3 years ago and there are only 4 tiny scares on my abdomen that can be seen if you look closely. There are a total of six , but one is where the stoma was formed and the other is in my navel. The biggest incision I had was where the exit was pre-surgery and we know the only people that see that are the one we allow.
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05-16-2016, 08:02 PM   #14
gschultz
 
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Thank you everyone for responding! I am ready for it. To feel better and possibly have a life that i never knew exsisted.Tomorrow I start my clear liquid diet for the surgery on Thursday. not sure if I can make it 2 days just on clear liquids, I get hangry very easily! One day I will be able to eat again, one day.

I'm sure I will be on to let you all know how it went!
05-16-2016, 08:17 PM   #15
Eridon2002
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Best of luck with the surgery! When I had my ileostomy I was able to eat food I hadn't had in years! My night sweats ended, I had color to my cheeks and I felt great(that is once everything healed). One tip for after the surgery is walk, walk, walk. You won't want to walk but tell your family and your nurses to force you out of bed if necessary. I ended up having to be in the hospital for 10 days because they couldn't get the pain under control(I don't react normally to pain meds). Thus i couldn't walk or eat and was in the hospital a few days longer than normal. But once home I started to bounce back; appetite came back and I started walking(slowly) on the treadmill everyday. Read through this forum. There are great threads on recovery and also on how to manage the ostomy bag. You'll go through lots of samples to figure out what bags work for you and expects some leaks-don't let it frustrate you, it will get easier(and it is worth the inconvenience).
05-17-2016, 07:58 PM   #16
boussole
 
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Good luck for your surgery! I'm glad to see you ready for it!

I've had my ileostomy for +/- one year (already) and I've never felt so good, really!

As Eridon2002 said, walk, walk and walk again! I don't know where you live, but it's probably spring over there, enjoy the good weather and go out for short walks everyday.
Also, try to stop the pain meds quickly, really.

One last thing, during the first month, eat what your GI/nurse will tell you. But after this, just try. There are so much things people told me I shouldn't eat because they had blockages because of it and for me: nothing. It REALLY is different for everybody, so it's worth a try.

Good luck, I will be thinking about you on Thursday. You'll soon feel so great, I'm excited for you.
05-17-2016, 10:22 PM   #17
CrimsonJade
 
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The first step is actually wanting the perm ileostomy. We went through this whole ordeal thinking we'd get the 3 step J-pouch surgery and stopped at step 1 with an end ileostomy. Despite what my husband thinks, it's the best thing that has happened to him. He would sit on the toilet for hours after every meal in pain, constantly needing new underwear, and never left the house without a change of pants. It got bad enough at the end that we couldn't be within 5-10 minutes of a bathroom. You won't regret it! Make sure you know who your medical supply company is before surgery and get plenty of tips from your ostomy nurse. They are the best!
05-23-2016, 07:22 AM   #18
gschultz
 
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Thank you lol for your input and reassuring words. I had surgery Thursday everything went well and as rxpect d. They say I'm doing great. Have great pain control, up and walking. Was looking forward to going home today. It's my 31st birthday. Not sure if it will be today or tomorrow. Just feeling really down, and most of all bloated. My output yesterday was really high in the afternoon. Anyways thanks for listening. Hopefully my next post will be more peppy!
05-23-2016, 07:29 AM   #19
Eridon2002
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Happy Birthday! Glad the surgery went well. I know it's hard but don't let yourself get down. It will take a while to heal and adjust to the new normal. The output will be high for a little while. Make sure you drink lots of water, I know I felt so dehydrated for the first few weeks.
05-23-2016, 08:39 AM   #20
VeganOstomy
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Thank you lol for your input and reassuring words. I had surgery Thursday everything went well and as rxpect d. They say I'm doing great. Have great pain control, up and walking. Was looking forward to going home today. It's my 31st birthday. Not sure if it will be today or tomorrow. Just feeling really down, and most of all bloated. My output yesterday was really high in the afternoon. Anyways thanks for listening. Hopefully my next post will be more peppy!
Happy Birthday! Recovery will happen, just get through this first little bit and things will be much better!
05-23-2016, 01:05 PM   #21
CrimsonJade
 
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Happy birthday! My husband will be 31 soon. Peppermint oil did wonders for gas and bloating. They should be giving you protonix or something similar. Walk as much as you can tolerate, take as little pain medicine as you can tolerate, wear the abdominal brace (we just cut a hole out where the ostomy is), and ask for immodium if you need it. It takes your body up to a year to normalize, and immodium helps a lot with slowing things down and maintaining hydration. You should get a list of things that can thicken and thin your output. We always use the large marshmallows when changing the wafer because it gunks it up long enough to get a clean surface.
05-26-2016, 09:56 PM   #22
boussole
 
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I'm glad the surgery went well!! Are you finally home? It's alway easier to feel better at home
06-06-2016, 11:01 AM   #23
gschultz
 
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Hi All!
I am home from the surgery on the 19th. Surgery went well. I also had my 31st Birthday while I was in there. I ended up staying in the hospital for 2 weeks! I almost went crazy. they were going to discharge me on the 23(my birthday) but my ostomy had crazy high output. I still have high output but was able to come home to my kids and husband because they installed a picc line and I am getting the hydration I need at home through that.

I know that I am only about 3 weeks out of surgery, and the output is still slowly slowing down. my patience is wearing thin though. actually depressing. I have home care coming in to take care of the picc line, and home care coming to make sure the ostomy is ok. I'm not allowed to drive or leave my house.

anyways I guess I have some questions for you. how do I slow the output down? I have good days where the consistency is where it needs to be but the further in the day I get the more water comes out. I'm taking 2 immodium four times a day, and 2 lomotil 4 times a day. Prilosec 2 times a day, and benefiber 3 times a day. I guess I just feel that if my output keeps up with the water aspect and it literally keeps dumping that I may never get off of this picc line.
06-07-2016, 07:52 AM   #24
Eridon2002
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Have you tried the BRAT diet? Bananas, Rice, Applesauce and Toast can help thicken up output. Your small intestines are still inflamed from the surgery which can cause the "diarrhea"(high liquid output). Once the inflammation decreases the output should lessen and become regular. For me, this took 4-6 weeks but it didn't start feeling more consistent till 8 weeks.
06-07-2016, 02:51 PM   #25
gschultz
 
Join Date: Mar 2013
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haha Yes I am eating so much BRAT diet its coming out of my ears!!! I was told to drink drink drink because the output is soo high. I feel its counter productive though with the output.. so today we shall try it.
07-05-2016, 02:18 PM   #26
gschultz
 
Join Date: Mar 2013
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getting depressed about my output. it has been ridiculously high and I have been in ER twice in 2 weeks for low calcium and magnesium. just seems like I cannot keep those up. one day my output is thick and happy and the next its just water. I am getting my fluids in eating a lot of the BRAT diet and still keeping it low fiber and low residue. I'm on 8 immodium and 8 lomotil a day. just feel like I hit a wall
07-05-2016, 04:07 PM   #27
Tommy21bn
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Try some codeine that will definitely slow you down! I know painkillers are an odd suggestion but they really work.
07-05-2016, 05:45 PM   #28
Nosebag
 
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Hi Gschultz

I have my ileostomy nearly a year now and suffered almost exactly the same issues in the beginning as you. I only have 160cm of small bowel left so I will have a higher output anyway. How much do you have left? In the first few months I felt thirsty all the time and didn't stop drinking fluids. Personally I find even now the more liquid I drink the more dehydrated I get. It's better for me if I drink slowly throughout the day. I still get blood tests to keep an eye on my magnesium and take magnesium supplements.As time goes on it definitely gets better and slows down.I also take 16 Imodium daily and adding codeine can slow it even more. I try not to take codeine now but it helped during the first few months.I was in hospital a month and the first few months after the surgery I had a difficult recovery during. I couldn't gain weight and didn't think I work ever work again. Here I am not even a year later working and exercising. Unfortunately these things jus take time but you will get there.
07-05-2016, 06:53 PM   #29
Eridon2002
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Don't get discouraged! Do you have the green light from your doctors to start increasing fiber? I found that when I added fiber at 8weeks post surgery it thickened up my output significantly. Sweet potatoes, Kasha(toasted buckwheat), spinach, zucchini....
07-06-2016, 10:10 AM   #30
gschultz
 
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I was at the surgeons office last week. he really didn't say much about upping fiber. just said that I will slow down eventually. I have days that its thick and happy, and then flood gates open. I have realized that my Norco does help slow it down, but the side effects make me sleepy. I take Norco for my arthritis and only take it when I really cant move. anyways this morning I ate some oatmeal. even though it was short lived, when it came out it was tremendously thicker. I could never eat oatmeal before the surgery and honestly it tasted soooo good.

when I was admitted to the hospital the fourth of july the nurse wanted to look at my ileostomy and the output and I went to show her, the out put was thick and only around my ostomy opening. I started crying because its just so unpredictable and frustrating!! thank you all for you support. if I didn't have this site I might go crazy, and so would my husband!
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