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Crohn's Disease Forum » Surgery » Stoma Subforum » Just said "yes" to an ostomy


 
12-05-2014, 10:32 AM   #1
sully1102
 
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Just said "yes" to an ostomy

After 7 years of relatively good quality of life, my Crohn's has flared pretty good the last few months. I've been dealing with abscesses & fistulas, and the decision has been made to temporary divert my colon. Surgery should be happening just after the New Year.

After a list of pros & cons, I've decided that my quality of life is worse without the bag right now, and my colon needs the rest.

I've done my reading & research, but was hoping some people here could fill in the blank spots.

1. I understand I'll be in the hospital a few days, then roughly "3 weeks" of doing nothing. Having seen friends after C-sections, I'm assuming I'll literally be doing nothing. How limited will I be?

2. Then I've also read that it will be 2-3 months before I can think about returning to the gym. Is this true? Can I at least return to walking on a daily basis?

3. Reconnection - I'm hoping for about 9 months out. Does the recovery process reset? Another 3 weeks of nothing and 3 months of limited activity?

4. Sex - how tough is it for everyone involved knowing there's a poop bag between the bodies?
12-05-2014, 11:02 AM   #2
DJW
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I've had a perminant ileostomy for years.

1. The hospital stay can vary. They want your intestines working again. I'm usually 5-7 days. While it's routine it is still major surgery.

2. You will be pushed to walk a lot in hospital. Keep that up when released. The gym is fine but make sure you have a good ostomy support belt. With a stoma you basically have a hernia. Be careful.

3. Can't help you with that one.

4. You get used to it. Covers are available.

Sending you my support.
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12-05-2014, 11:03 AM   #3
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Sorry to hear but I hope it's a short process and allows for healing. Everyone is so different on this. There are people who come out of surgery and return to life as if nothing much changed and others take months to get accustomed physically and emotionally.

I think your understanding is correct. It will likely take several weeks for your body to regulate and for you to feel ok enough and know how to deal deal with your appliance.

I recommend reading everything on ostomies you can, watch YouTube videos and ask away. You think of crazy scenarios when you have a bag. No question is stupid! I'd also call all the companies after to get free samples once you know your stoma size. Join the ostomy association, UOAA has support chapters all over and a great magazine called The Phoenix.
12-05-2014, 02:22 PM   #4
highlandsrock
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Hi Sully

I went through the stoma/reversal process in 2010/11 and since then have been in clinical remission. Having the stoma was definitely the right choice and coping with it became second nature.

I kept a diary going during the process a) to keep my mind active during the hospital stays & recovery and b) in the hope that it might help demystify the process for others about to go through the same. Overall it was a positive process and because it was elective surgery it gave me time to come fully to terms with what was about to happen. I hope it all goes well for you

Here's the link to the diary entries on getting the stoma - http://www.crohnoid.com/p/oct-2010-p...-hospital.html
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12-05-2014, 11:19 PM   #5
VeganOstomy
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1. I understand I'll be in the hospital a few days, then roughly "3 weeks" of doing nothing. Having seen friends after C-sections, I'm assuming I'll literally be doing nothing. How limited will I be?

2. Then I've also read that it will be 2-3 months before I can think about returning to the gym. Is this true? Can I at least return to walking on a daily basis?

3. Reconnection - I'm hoping for about 9 months out. Does the recovery process reset? Another 3 weeks of nothing and 3 months of limited activity?

4. Sex - how tough is it for everyone involved knowing there's a poop bag between the bodies?
1. I went into surgery barely able to walk up stairs and 6 weeks later was going on hikes that were several kilometers each.

2. Your doctor will give you the ok to return to the gym. There are hernia prevention products around, but it's best to take it slow.

3. I have no experience with reconnection; my ostomy is permanent.
4. Shouldn't be an issue. I wear an ostomy wrap and it's never been an issue.

Good luck!

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12-06-2014, 11:05 AM   #6
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I'm going into this with the attitude that life is pretty crappy right now, with chronic diarrhea, pooping my pants about once a month, and then the general pain that comes with wiping around abscesses & setons.

I just got married in May, had an amazing honeymoon in July, and then things hit the fan. Being a active man (triathlete, CrossFit, etc.), I really want to get back to that quality of life.

If I can do all those things, and knock-up my wife, it will all be worth it.
12-17-2014, 04:52 PM   #7
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How long were people in the hospital? I'm hearing mixed signals of 3 days up to 2 weeks.
12-17-2014, 04:56 PM   #8
VeganOstomy
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How long were people in the hospital? I'm hearing mixed signals of 3 days up to 2 weeks.
I was in the hospital from Aug 21st (early am surgery) and sent home Aug 27th (late morning to early afternoon, I believe).

What slowed me down was that I had high, liquid output and they didn't want to send me home only to come back because of dehydration - eating chips while in hospital did the trick
12-17-2014, 10:56 PM   #9
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1) For my initial disembowelling, I was in the hospital for a bit more than a week due to minor complications. I was fairly useless for the first week, however after that I was mobile, just in pain, my surgery was open as opposed to laproscopic.
2) Can't help you with the gym, but I was going for walks during the first week at home.
3) It's a different recovery. I've just had my reconnection less than a month ago. This one was not nearly as physically taxing, they didn't open me up to any major extent, they just reconnected the small bowel, pushed it back and closed me up. The recovery is more based on retraining the bowels. I'm not close to being recovered,but the pain level is much lower than any of my previous surgeries. My only hindrance with this surgery is that my appetite is shot, which has caused me to drop weight quickly and and is making me weak. But that has happened before.
4) It worked out fine just empty things out first, but wait a couple of months to be safe. Also it may take a few weeks maybe month or so for things to properly work.
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12-19-2014, 04:26 PM   #10
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How long were people in the hospital? I'm hearing mixed signals of 3 days up to 2 weeks.
It depends on whether you have any complications. Even very minor things can cause a cautious doctor to keep you in until things resolve, e.g. if you have a high temperature, heart-rate, low blood-pressure. With a stoma surgery they'll want the stoma working before you're discharged. My first stoma surgery I was told I'd be home in a few days, but developed ileus and ended up staying about ten days. My other two stoma surgeries were under very unusual circumstances so won't mean much when predicting average times. But the three days to two weeks you've already been told is probably as accurate an answer as you'll get: if all goes very smoothly, a few days, if it doesn't, it'll be longer, but unless you have other complicated health problems or are very very unlucky, it's highly unlikely to be longer than a couple of weeks.
12-19-2014, 04:58 PM   #11
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I can relate to your situation, and that's why I would be (am) doing every single thing to avoid another surgery. I also had an active social life that included horses, kids, etc until I had abscess / fistula surgery. When the seton fell out I simply never replaced it. My daughter's father-in-law has reached the end of his stoma's life at just 70. No doctor will move it again now because of all the hernia issues it has created. 70 may seem old now, but he's got 5 kids all having grandkids .... and he wants to do more with them and now can't that he's sitting up at night holding plates to catch the blood leaking from it. All nutrients are absorbed via intestines. He's seen more hospital casualty rooms than he can count. We all need to think way ahead before allowing surgery. The body can heal if you try things that may seem off-the-wall at first. Only got your guts to lose, right?

Please consider this waiting period a test period for alkalising your body to see if your symptoms abate. Please see my other post left for Sariar a few minutes ago. Short on time here, sorry.

All the bset.

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12-19-2014, 07:03 PM   #12
2thFairy
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My daughter's father-in-law has reached the end of his stoma's life at just 70.
What exactly does that mean???
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12-19-2014, 08:01 PM   #13
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was wondering that myself, stoma's have a sell by date now?
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12-19-2014, 10:59 PM   #14
Nym
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Sorry, was a little rushed earlier.

Yes. The surgical site certainly has an expiry date. As the years have rolled on and the disease progressed so too did the surgical options. Each time the symptoms got bad enough another section of intesine was removed. Sometimes a new site was created - it is this that is no longer an option despite the constant hinderance and discomfort of the current site. The belly moves constantly; laughing, talking, eating, breathing. Much like a fistula the stoma site never truly heals inside. Then add in age, and limitations start to apply rather rapidly.

This man was having to rush for the bathroom when he was a teenager. He's followed doctors orders, dietary advice to the letter to end up at a surgical dead end.
12-20-2014, 12:02 AM   #15
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There are times when surgery is unavoidable. Surgery gave me a life. Yes, as years go by I will encounter more issue but without the surgery who's to say i would have had a chance to have problems down the road . My crohn's caused some life threatening complications when no meds or alternative treatments worked. I'd do it again in a heartbeat.
12-20-2014, 12:15 AM   #16
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Unfortunately for some people choice is not an option and the body will not heal itself as waiting is not in the equation. Well, I guess choice is always an option but it is down to either surgery or die, both of my children fell into this category. Severity of disease and phenotype varies from person to person too so there is no one size fits all approach to this disease.

I have seen it stated on the forum before that Crohnís/IBD isnít fatal, wrong. Complications in the more severe presentations do have the potential to be fatal if medical treatment is not sort immediately. Then there are the complications of inflammation that is left to simmer under treated or untreated.

I think we need to mindful of our own experiences and ensure when giving advice that we emphasis what works for us is just that, one personís experience that does not necessarily equate to success or failure for someone else.

Dusty. xxx
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12-20-2014, 05:56 AM   #17
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Please consider this waiting period a test period for alkalising your body to see if your symptoms abate. Please see my other post left for Sariar a few minutes ago. Short on time here, sorry.
What does alkalising your body mean?
12-20-2014, 07:07 PM   #18
Nym
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What does alkalising your body mean?
Thanks, UnXmas, put simply it means raising the ph. So many family and friends kept saying I shouldn't eat tomatoes due to the acids. I listened to them for a time, then began adding a tomato to my fresh juice concoctions -kids lovedit also. However, If i was having a flare I wouldn't munch down on a lemon or a tomato. All juices are best sipped,holding in the mouth to mix with saliva as they would when being chewed. Throwing down a huge glass of juice does the body no favours; bloat, gas, cramps, pain ...

What is alkaline?

The concept of acid and alkaline foods is a confusing one. For instance, lemons are sour and acidic, yet they have an alkalising effect on the body. This is due to lemonsí mineral content, and the influence these minerals have on pH, or the acid/alkaline scale. The upshot is acidic tasting foods can be alkalising.

Is your diet alkaline or acidic?

pH levels vary within the body. For instance stomach acid has a low (or acidic) pH of 2-3, whereas bile, that helps break down fat has a higher (or more alkaline) pH of 8-9. Blood pH is between 7.35-7.45 or slightly alkaline. The tiniest upward shift in pH will have a positive impact on your wellbeing.

Why alkalise?

Naturopaths believe certain conditions including arthritis, cancer, osteoporosis, gout and eczema are acidic in nature. The best way to prevent them is to reduce acid forming foods and increase alkaline forming foods. This 10-day alkalising detox will fast track your body to being in a more alkaline state.

http://www.bodyandsoul.com.au/health...tox+diet,28027

http://www.alkalinediseasecure.com/gout-cure/

If those afflictions listed above are believed to be acidic - they are all inflamations - why not Crohn's and associated gut issues? By rebalancing the body's alkaline leve,l even those with gout would be able to eat and benefit from a tomato. Plus it kills candida.
12-21-2014, 09:38 AM   #19
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Somehow I doubt that alkalysing could have helped me in the way that having an ileostomy has helped me. You do understand what an ostomy is don't you? You can't substitute one with lemons.

Last edited by UnXmas; 12-21-2014 at 12:05 PM.
12-21-2014, 09:43 AM   #20
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Somehow I doubt that alkalysing could have helped me in the way that having an ileostomy had helped me. You do understand what an ostomy is don't you?
12-21-2014, 09:52 AM   #21
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Nym - do you have any peer reviewed studies that validate your claims?
12-21-2014, 10:10 AM   #22
2thFairy
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Susan2 - I'd love to hear your input on the "expiration date" of a stoma.
12-21-2014, 06:55 PM   #23
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Thanks, 2thFairy.

As background, I've had my stoma since April, 2000. After living with Crohn's for about 35 years, numerous surgeries and resections of my colon, some in life-threatening circumstances, then stubborn instance that I was not going to have an ileostomy, I reached the stage where my GI said: Do it or probably die! So, with those alternatives, I chose an ileostomy!

Unfortunately, I had left it so long that the whole colon, rectum and anus were badly affected and had to go.

Now, I am 71 and have never heard of an 'expiry date' for a stoma. Mine seems to be as healthy at present as it was when it was first created almost 15years ago. Yes, I have been very fortunate (everything crossed and touch wood) in that I have had no major flare since having my stoma.

Although I have no medical training, there is no evidence, in my case, to support the idea that the stoma site never heals inside. The stoma itself bleeds fairly easily if you treat it harshly but so does the inside of your mouth, which is the other end of the intestinal tract and made of the same 'material'. (If you don't have a stoma and want to know what one would feel like, just feel the inside of your cheek.)

I am fairly active; I don't go to a gym but do lots of environmental weeding and revegetation, which can be extremely hard work, bush walking, swimming and snorkelling. I travel both within Australia and overseas - off to Peru in April next year! Life is not all a bed of roses: I have to be careful what I eat and drink, I get tired and need to take a nap on some afternoons...

With luck, I hope to be still around, with my stoma for many years to come.
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12-21-2014, 10:04 PM   #24
Nym
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Chronic renal failure is also an issue for me.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3195546/

http://medical-dictionary.thefreedictionary.com/ostomy

Thanks Susan, if only my daughter's father-in-law had been as lucky.
12-22-2014, 06:33 AM   #25
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Nym - I'm sorry that your daughter's father-in-law has had such a hard time, and you bring up an important point: that surgeries don't always solve the problems they were intended to and can increase the risk of certain complications later on. Doctors should be able to give their patients an idea of the chances of future problems, and only recommend surgery if they believe the chance of benefits outweighs the risks, but they can never know for certain and ultimately the patient has to make the decision about what they feel is best.

In many cases, doctor, patient or both may be hesitant about surgery and want to try other treatments first, or maybe even try just living with medical problems rather than attempting to fix them with surgery. However, there's a big difference between trying conventional medical treatments and trying alternative remedies and diets that have no high quality evidence suggesting they will actually do any good.
01-07-2015, 05:21 PM   #26
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New question: what do people like using for belts/bands?

A friend of a friend with a bad says she loves using maternity bands. I'm not above this for day-to-day use, but I'm thinking more about when I get back to my active lifestyle of sports. I've researched a number of guards that seem effective, but also pricey. I'm just playing semi-competitive flag football, and doing races like Spartans or tris, plus looking to get back into CrossFit (carefully).

Any suggestions on this front for protecting the stoma?
01-07-2015, 06:22 PM   #27
VeganOstomy
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New question: what do people like using for belts/bands?

A friend of a friend with a bad says she loves using maternity bands. I'm not above this for day-to-day use, but I'm thinking more about when I get back to my active lifestyle of sports. I've researched a number of guards that seem effective, but also pricey. I'm just playing semi-competitive flag football, and doing races like Spartans or tris, plus looking to get back into CrossFit (carefully).

Any suggestions on this front for protecting the stoma?
Does this help at all?

https://www.youtube.com/watch?v=dZkP5koouQs

I use a mix of products depending on the situation, but for day to day stuff in the house, I just let the bag hang

Sent from my SM-N910U
01-07-2015, 08:31 PM   #28
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I bought a guard from Stomaplex, but have never used it other than around the house for a few hours when I first got it. It is really comfortable and gave good protection. http://www.stomaplex.com/

However, I let mine hang out all the time. No belt.
01-08-2015, 04:28 AM   #29
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I prefer mine held in, at the moment, due to some things going missing, and some companies being slow on dispatch, I haven't received anything yet, apart from the guard I got on prescription.
I have ordered a diagonal Stealth Belt plus guard, a belly band and knickers from Comfizz and some more knickers from Rose White, the ones that have a pocket for your pouch.
Not one has arrived yet
As to the prescription guard, I've found it uncomfortable to wear for any length of time, the flange tends to dig in when I'm sitting, so just yesterday, I got some mouldable air drying rubber stuff called Sugra and put it round the flange, so far so good, it does feel better, but I've yet to use it in the car, which was the problem previously.

I was out of hospital in six days btw, very little pain, and I was home two weeks before I started taking my dog for an hours walk every day. I would have been sooner, but my OH was being a clucky hen and insisted on doing everything for me.
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01-09-2015, 05:33 PM   #30
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I use the knickers from Comfizz, they are so comfortable and make your bag feel really secure. I don't have a Stoma anymore, but still wear the knickers! I found that they were very useful after surgery as they supported my stomach which really made a difference.


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Resection and removal of Enterocutaneous Fistula: Jan 2014
Pelvic infection Drainage: April 2013
Ileostomy reversal: February 2013
Ileocecal resection and temp. ileostomy (Say hello to Norman!): Nov 2012
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Past medications: Humira, Infliximab, Azapthioprine, Asacol, Budesonide, Prednisolone, Flagyl, Cipro, Cholestyramine (Questran), Fortisips.
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