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The Stuff You Don't Hear About IBD  

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VeganOstomy
(@veganostomy)
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11/12/2018 11:32 am  

Hi Hilary, thank you for reading. I'm glad you learned something new about IBD :) Have a wonderful holiday!

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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VeganOstomy
(@veganostomy)
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11/12/2018 11:41 am  

Hi Klancee,

Thank you for reading and also for sharing your story. Dealing with it for decades would have been very difficult, but I hope that it made you a stronger person for coming out of it.

I hate that you were given the run around by your doctors and even blamed for being sick! That's not what patients need, and I can only hope that doctors today are wiser.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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VeganOstomy
(@veganostomy)
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11/12/2018 11:41 am  

Thanks for reading, Cindy!

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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john68
(@john68)
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Posts: 1276
11/12/2018 12:41 pm  

Crazy to think I had a doctor who kept telling me my weight loss and pains where all in my head. His advice was not to get stressed 😩 

ileostomy 31st August 1994 for Crohns


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Dona
 Dona
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Posts: 647
12/12/2018 11:12 am  

If I am ever tempted to pity myself for having an ostomy ( hasn't happened yet), I am going to re read this post/thread. Thanks for bringing it to the front again!

For many of us, the diagnosis/treatment phase goes on way too long. By the time we get this life saving surgery, we are very ill indeed.

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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VeganOstomy
(@veganostomy)
Admin
Joined: 5 years ago
Posts: 2290
12/12/2018 2:32 pm  
Posted by: john68

Crazy to think I had a doctor who kept telling me my weight loss and pains where all in my head. His advice was not to get stressed 😩 

Too many people are told that their illness is "in their head" - and many suffer for years because of it. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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SqueakyandLiza
(@squeakyandliza)
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Posts: 82
05/06/2019 10:12 am  

Such an informative article. I have been struggling with how this seemed to come out of nowhere for me. I went from feeling sick starting at the end of March 2018 to having my colon removed in mid June. Of course that two and a half months was like you described. Anything I ate either went right through me or came back up. I lost 40 pounds in that time. I tried going to dr a couple times but she didn't know what was wrong and did some inconclusive tests. 

But after reading this article you wrote, I can see there were warning signs. 12 years ago, I had a huge abscess, which was the most painful thing ever. My dr at the time had me schedule with a surgeon to drain it. In the time waiting for my appt, it burst. My right butt cheek is where it came through but it was way up in me. The surgeon said it was the size of a small football. I had two different surgeries that year to have drain tubes put in. And my husband and I joked that we should buy stock in the butt pad company. I've never heard of anyone else who used butt pads before (what we called putting the gauze between my butt cheeks). Of course back then we didn't know you could buy gauze by the brick and we were buying boxes of 25 individually wrapped gauze squares. Super spendy buying it that way. 

So, now in hindsight, I see that was probably an early sign of the Crohn's. But no one figured it out. Over the 12 years since the abscess, there were other things, mostly blood from my bum, and that is on me for not saying anything. But there was nothing else that alarmed me, so I attributed it to the after effects of the mystery abscess. It has drained off and on and bled off and on over the years. I would just buy a couple boxes of butt pads and deal with it. Now I know there is a fistula there that the dr says will never go away, and they put a seton(?) ring in to allow it to properly drain. 

I wish I would have read this years ago. I might have been diagnosed with Crohn's before I lost my colon, rather than after. But at least I have this website now and all of the people here to make me realize I am not the only one going through this. 

Thanks Eric!!


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VeganOstomy
(@veganostomy)
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Joined: 5 years ago
Posts: 2290
05/06/2019 10:17 am  

SqueakyandLiza, thank you for sharing that. It must have been incredibly frustrating to not have answers during that time. The incredible how painful those abscesses are! A large one like you describe must have been a nightmare! I hope you are doing better now.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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