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Hello, new ileostomy, lots of questions  

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z1821
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August 22, 2018 4:32 pm  

Hello,

My name is Zach. and i just recently received my ileostomy.  Long story short, I was a competitive bodybuilder, 3 weeks out from a national show, and i woke up in extreme stomach pain. I went to work, and within a couple hours my stomach pain was unbearable. I went into the ER where they immediately transferred me to the main hospital. Their i was told i had a blockage and they put an NG tube in me to relieve the bloackage. After a 5 days, no improvement they went in for surgery. In surgery they removed 25cm of small intestine and thought they fixed the blockage. I was sent home, less than 24hrs later i was back in the ER in extreme pain with an infected incision. While in the er, i argued witht he Dr about another NG tube, i knew something wasnt right. Within 30 minutes i started vomiting bile and blood, then my incision opened up and my intestines started to fall out. I was rushed in surgery and was severely septic. I was intubated for a week while they performed 3 surgeries. After intubation, and a week in the ICU, i woke up and realized my life had changed. Unfortunately i spent a total of 5 weeks in the hospital and lost 65lbs. This has bee very traumatic for me and my family, im glad i was able to find this community because i have lots of questions. Thanks for your time.


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VeganOstomy
(@veganostomy)
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August 22, 2018 9:09 pm  

Hey Zach. 

Welcome to the forums and thank you for sharing your story. Man, sounds like you're lucky to be alive! Glad you're with us! 

Please feel free to ask any questions you have in the appropriate sub forum. 

See you around! 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Dona
 Dona
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August 22, 2018 10:29 pm  

Hi Zach.  You will find a lot of caring and experienced people here. Ask questions about anything at all. You have had a really horrible experience. Like Eric said, you are lucky to be alive.

I will just say for now that it does get better.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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Bubbles
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August 22, 2018 10:55 pm  

Wow  Zachary , 

Scary stuff . Glad you made it through. You are a tuff cookie . We are here for you . 

Be well , Bubbles 


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LK
 LK
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August 23, 2018 1:20 am  

Hi there Zach, Welcome to this site. It is not fun to suddenly wake up with an ileostomy. In your case you have been so very strong and so active, you must think you have crashed and burned.  You have a family and that is a great place to start. Lots of support I hope. It is an education for everyone.  I trust they will be of great encouragement and understanding.  You are not alone in this weird and wonderful world.  Your body has let you down and assaulted all of your senses in the universe as you know it.  I just said last week to someone that it never ceases to amaze me what the body can take and give. Your a good example. We are fearfully and wonderfully made. Now, for Erics sake I will try to keep this shorter than I usually manage.  Through pain, 4 surgeries, infection, severely ill, and back into surgery, ICU, 5 wks in hospital and weight loss to boot.  You have been thru the gammit! On top of it, your my hero. You fought off an NG tube. I despise those things. But, I would be willing to bet you awoke from your last surgery with one. They do however have there purpose, I have an agreement with my surgeon, NG only under anesthesia.  I can only hope that is the case. In or out, I think they are equally horrid. The weight loss is somewhat normal for what you have been through.  I would suggest you watch as many as Erics videos as you can, find the list, there is a lot of great information there.  Feel free to start your own forum on your  questions, and you will get answers from those who have knowledge and info on those topics. I am not computer literate, and I managed to do that once. Questions on anything you need to know, this is the place...even if you find them embarrassing.  It may take a few days sometimes, but you will get answers.  As you go along, there will be things that come up that you may need to know also. Just ask. If you need encouragement on tests or anything, just say so. We are here to help. You will find Eric to be incredibly helpful especially.  See the samples list and make phone calls to companies about anything from room deodorizer, to bag deodorizers, Osto EZ Vents...I could go on. It means you do not have to settle for one particular pouch.  Your stoma nurse, I've heard can be great help also. Take any info you can get.I am sorry to hear you have been thru so very much and really hope you heal well and feel better soon. When I was so underweight I ate many small meals a day until I started to gain and kept notes on how everything affected me. All the best. Linda

Linda


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Zvitusk
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August 23, 2018 12:06 pm  

Dear Zach,

If i was a lawyer, I would love to have your case.

I am not,  but it is something to think about. 

Welcome to our world.  We are here to help you travel through the next few shoals of life. Our motto is "been there, done that". 

(Also "manure happens ".)

Where are you? Tell us about your self. 

While you are healing, read up about us, individually. We all have interesting stories.  Hope to hear from you soon. 

Z


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LK
 LK
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August 24, 2018 5:00 am  

Zack, s Zvitusk suggested, to read up some, go to Members and or individually click on our names at the left or right side above, and it will take you there. I figured that out by mistake, but it works. Eric story is incredible with pictures to boot. Gives a person a much better understanding about the things people on average never tell. But Eric makes it real and okay to talk about. Hope your  well and not in hospital.

Linda


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z1821
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August 28, 2018 11:20 am  

zvitusk, I definitely have a malpractice lawsuit, but all that is really important to me at this point is to get healed up. To answer your question, I live in Illinois, I'm married to my best friend and now my care taker, and I have a 12 year old son. Before all of this i was a competitive bodybuilder, personal trainer, and online fitness consultant. 

Thank you all for responding. This still has turned my life upside down, but im trying to move forward. My surgery on my vocal cords, from the hospital damaging them with breathing tubes, hasnt been successful, so i will be having yet another surgery on my vocal cords. I have my post op apt. in a week, at that time im hoping to get some answers. My wife and i decided that we want better care and a specialist, not a general surgeon that is being overseen by a "specialist" so we will be finishing the surgeries for the reversal at Barnes in St. louis MO, which is about 4 hrs from me, but they are highly rated, with a great track record, where the hospital im at currently isnt.

Im still have a ton of issues with watery high output( 4 liters a day) and it seems that diet changes do not make a difference. what ive found is im drinking so much to stay hydrated (96-128oz) a day that its just coming straight out. I do make sure to not drink 30min before meals etc. but it hasnt changed much. 

Again thanks for all the help, I will continue to reach out, im just still ridding the struggle bus. 


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VeganOstomy
(@veganostomy)
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August 28, 2018 12:57 pm  

I really do your future surgery and follow up appointments go well. 

Because so much of your small bowel was removed, there may not be too much you can do about the high-volume of output (it's pretty normal for someone with "short bowel syndrome"). Your doctor may be able to put you on meds to help slow things down (we commonly use imodium), but this may or may not be an ideal solution. 

To help manage the liquid output, I would suggest using gelling products ( https://www.veganostomy.ca/guide-to-ostomy-gelling-products/ ) to help thicken things up. Another option would be to use high-output ostomy bags - they have higher capacity and a spout to empty from.

Regardless of the distance, seeing a true specialist will benefit you a lot. 

Best of luck. Please keep us posted and let us know if you have any other questions. 

 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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z1821
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August 28, 2018 3:48 pm  

Thanks for your help! Ive been watching your videos and its so much info and i appreciate it so much. The hospital that i used really didnt help me at all. I will keep you updated, and i have already reached out for for the gelling products! 


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LK
 LK
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August 28, 2018 5:40 pm  

Z...when is enough enough eh?You have been through one battle only to conquer another. I have had so many tubes down my throat I can not sing like I used to and my voice is often gravely. After my surgery, I dealt with bad dehydration, I drank as much as I put out. My doctor suggested, I try to drink less and see if that made a difference. I hate needles so IV fluids in the ER were becoming the only option. I have experienced bad dehydration and it was not fun, so I was drinking to avoid it, but when I slowed down on fluids, I was putting less out. To this day, I can drink a glass of water, and it seems to instantly go right thru me. So to avoid feeling thirsty, I would suck candy or a tic tac when I felt dry. Still drinking, but  less. Putting out a lot less also. Still, drink according to my activity, and when I eat and in between, just less. I switched to melons with high water content and tho I still put out, I put out less. It worked for me. I hope you can find a solution. Get well!

Linda


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z1821
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August 28, 2018 8:18 pm  

Thats a great idea, drinking less, who would have thought! Before all this i drank 1-1.5 gallons a day, now im less but not much. Maybe ill back it down to 64oz a day and see what happens. I have IV i can run from home if i get dehydrated, but i try not too. Im in the same boat, i can almost feel it coming out in my bag as im still drinking, so thanks for the tip.


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LK
 LK
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August 28, 2018 10:01 pm  

Z...I guess we will see if it works for you or not. I hope it makes the difference you need. The first year with an ostomy is the most trying time. Be patient and remember that your body has been thru a physical assault medically. They go in you and move all kinds of things around and then end you home often before your ready to go because of the high demand for health systems. It is also a real learning curve to those famous words...NEW NORMAL.  You are adjusting your thinking and actions all over again. Allow yourself the time your body needs to heal. It will let you know when everything is good again. Time, it all takes time.

Linda


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Robert
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August 29, 2018 10:48 am  

Hi z1821 . Welcome to the group  . I see you are new with your ostomy and its quite a change for you I'm sure . Hang in there you will get more used to things as time goes on some get more comfortable with it all faster than others but you sound like a determined person so you be fine . The hospital I was in is a really good hospital and I had a great surgeon . But you are right the hospital doesn't teach you enough . And yes go to a good hospital for the next one and get more specialized treatment . So yes ask all the questions you want on here . Between everybody here there is a lot of experience to learn from . I know this site has helped me tremendously I'm just coming up on 2 years with my Ileostomy and still learning . So again ask questions and good luck to you .....

Subtotal colectomy and Proctectomy , Ileostomy , Ulcerative Colitis


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jaymitch
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August 29, 2018 7:44 pm  

 

Welcome! I've had both of my cancer surgeries done at Barnes Jewish Hospital in St. Louis. My Docs are all from Washington University and the Siteman Cancer Center. I have been very pleased with the treatment I have received. Hopefully that is where you are headed. You will find this site to be very helpful. Patience is the key in dealing with the "new stuff" for sure. Hope everything from here on out goes well for you.

Jeff - Sigmoid Colostomy May 2018


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Empoweringpts9
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August 30, 2018 1:47 am  

Hi Zach! Welcome to the ostomy family. You’ve started off in a pretty good place here and at home with a good support system. I’m so sorry to hear of the turmoil you’ve been through between the blockage and the vocal chords. Are you saying you’re traveling for the next vocal chord surgery? I may have missed a detail, which wouldn’t be surprising for me. 😉

I’ve had my ileostomy for 15 1/2 years. I’m always learning something new.  

 

On the high output. Has your careteam Rx’d lomotil or something similar to try to slow it? I know it’s extremely draining literally and with the body. I have a high output (right now it’s more “stable” since I’m dealing with daily partial obstructions), so I’ve been around that block a time or two. There’s all sorts of thickening and bulking agents, like what Eric referred to and to sprinkle into something you’re eating anyway etc. I wish you well with each day. Know that we’re here for you. 

Alison 👋🏼
Crohn’s disease + permanent ileostomy


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Dona
 Dona
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Posts: 611
August 31, 2018 12:44 pm  

Hi again Zach,

 

I just reread all your posts and I just wanted to ask  ( not that I need to know... but you do) what was the underlying case of the blockage that began this whole thing for you? Did they ever figure that out? Was it at least discussed? Keep asking questions.

 

Another suggestion is that whenever you see anybody on an initial visit or a follow up...arrive with written down questions and TAKE NOTES!  My husband always went with me and took notes during every visit with his laptop!  It at least gets everyone focused.

If your wife or a close friend can help so much the better. Its almost impossible to advocate for yourself under such stressful conditions.

All the best to you.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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Marcie
(@shulmjs)
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August 31, 2018 2:26 pm  

I started with an 1 inch 3 hole binder------- I am now graduated to a 5 inch binder...… This is your bible..

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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z1821
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August 31, 2018 7:22 pm  
Posted by: Dona

Hi again Zach,

 

I just reread all your posts and I just wanted to ask  ( not that I need to know... but you do) what was the underlying case of the blockage that began this whole thing for you? Did they ever figure that out? Was it at least discussed? Keep asking questions.

 

Another suggestion is that whenever you see anybody on an initial visit or a follow up...arrive with written down questions and TAKE NOTES!  My husband always went with me and took notes during every visit with his laptop!  It at least gets everyone focused.

If your wife or a close friend can help so much the better. Its almost impossible to advocate for yourself under such stressful conditions.

All the best to you.

My blockage was caused from a 20year old appendix surgery that caused adhesion's in my intestines. 


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z1821
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August 31, 2018 7:30 pm  
Posted by: Empoweringpts9

Hi Zach! Welcome to the ostomy family. You’ve started off in a pretty good place here and at home with a good support system. I’m so sorry to hear of the turmoil you’ve been through between the blockage and the vocal chords. Are you saying you’re traveling for the next vocal chord surgery? I may have missed a detail, which wouldn’t be surprising for me. 😉

I’ve had my ileostomy for 15 1/2 years. I’m always learning something new.  

 

On the high output. Has your careteam Rx’d lomotil or something similar to try to slow it? I know it’s extremely draining literally and with the body. I have a high output (right now it’s more “stable” since I’m dealing with daily partial obstructions), so I’ve been around that block a time or two. There’s all sorts of thickening and bulking agents, like what Eric referred to and to sprinkle into something you’re eating anyway etc. I wish you well with each day. Know that we’re here for you. 

Im taking 2.5mg of lomotil x4 a day and 16mg of loperamide. I was also on tinctue of opiates, and so far nothing has thickened my output up.


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