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Songbringer
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October 5, 2018 12:35 am  

Hi all. I'm about to embarass myself. As my heading says, for the last at least 2 months, I've been having literally back to back obstructions. Or maybe it's one continual obstruction...who knows? It seems to clear, and then before I know it, it's back. I am so tired of being bedridden for 5 days to a week in pain so horrible I can't explain it. My stoma does nothing but violently expand and contract with little to no avail, and I lie in bed with my body wracked by brutal pain in the peristomal area. Nothing helps. Heat aggravates it, and ice packs provide little to no relief, as any slight weight or pressure in that area is too much to bear. When I finally feel better, and can get out of bed, every step is excruciatingly painful inside. Also, the past couple of weeks, and boy is this embarrassing to say, but the odor has been brutal...this has never been an issue in the last 2 or so years since having my ileostomy. I eat a very healthy diet, and nothing has changed with it, so I have ruled that out as a cause for the obstructions. They aren't complete as there is activity, but when I do experience moments of activity, it is so forceful and painful I scream and nearly pass out. So, this all being said, I am very concerned...I am also terrified that this also means it's surgery time again. Ironically, after 8 months of waiting, I see my colorectal surgeon next month, and I fear her decision based on this info. Has anyone here experienced this, and if so, what was the verdict for you? 

Crohn's Disease Diagnosis/1st emergency resection during a massively widespread blackout-August 14th/2003. Ileostomy since August 2016. Cheated death twice in 2016 during a 3 month hospital stay.


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VeganOstomy
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October 5, 2018 1:03 am  

Hi songbringer,

The severity is concerning. Any chance you can get in to see your surgeon in sooner or even head to the ER to see if they can do some diagnostic imagine to see what's going on inside? 

If you can rule out obstructions caused by food (which it sounds like you already have) the next set is to see if perhaps there are any adhesions or kinks that are causing this pain. 

Whatever the case might be, I hope you can find answers quickly. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Songbringer
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October 5, 2018 1:32 am  

Hi Eric and thanks for responding. Sadly, I cannot get in to see my surgeon earlier. As for the ER, I have been there so many times in brutal pain and made to sit in a hard back chair in the waiting room with zero regard for the brutal pain in excess of 10 hours. I've been brushed off and ignored so many times, I have given up going to the hospital, and opt for staying home. At least there I have a comfortable bed to lie in. I've been for so many x-rays, CT scans, MRI's, ultrasounds, barium tests, etc etc., and apparently nothing is ever detected. As a result, I've been labelled a drug seeker, verbally abused by staff and on and on. But enough of that. I did fail to mention that I have a peristomal hernia, and have been living for almost 2 years with increasing pelvic cramping, again being told it's nothing, being told that when my stoma is horribly engorged that it's 'normal", which I know otherwise. Anyhow, earlier this evening, I thought about having my colon completely removed as a last resort, but have no clue if that will remedy these obstructions. It's something I've decided to discuss with the surgeon. Have you heard of anyone resorting to this, and having a resolution? Thanks :)

Crohn's Disease Diagnosis/1st emergency resection during a massively widespread blackout-August 14th/2003. Ileostomy since August 2016. Cheated death twice in 2016 during a 3 month hospital stay.


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VeganOstomy
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October 5, 2018 9:29 am  

That's absolutely terrible that you've been treated that way. 

I won't even guess at what's going on inside your body. I had a friend who had ongoing pains and trouble with his stoma and it took several years and many tests before they found that it was adhesions. He had surgery to correct it and recovered very quickly. 

Out of curiosity, if you fast for a day or two, what happens? Do you get the same feelings? 

Hernias in and of themselves can lead to complications, so it actually wouldn't surprise me of that has a part to play in all of this. Those scans should have given the hospital staff some idea at least. I feel your frustration. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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john68
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October 5, 2018 1:21 pm  

That is a disgrace!! I have had a problem with bloating and had an MRI done recently. that test came back clear. The Doctor who give me the results said although nothing had shown up he wasn't ruling out adhesions. It goes to show just because no clear result shows up medical staff need to pursue not brush you off. My symptoms have not been as severe and i hope you get relief and an answer soon.

ileostomy 31st August 1994 for Crohns


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Bubbles
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October 5, 2018 1:55 pm  

So sorry you are hurting . When I had my Ileostomy surgery my surgeon found part of my smal bowel being strangled by an adhesion from a previous surgery one year before. He said the bowel was starting to die in that spot. I was having pains in that area I thought it was my spleen. None of this showed up in my CAT scan. 

Wishing you all the best , Bubbles 


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Songbringer
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October 5, 2018 6:28 pm  

Hi again Eric. Yes I agree it's horrible. But sadly, I've just learned to live with the pain. It seems I am forever fasting due to the pain, and to be quite honest, nothing much happens. I still have the pain from the obstruction trying to clear, and the cramping doesn't subside either...that is a daily occurrence all day every day, and, of course, it's always worse at night. I wouldn't be in the least bit surprised if it's adhesions causing this pain, as I've had 8 abdominal surgeries...I can only imagine the mess I am internally. So, at this point, all I can do, I suppose, is wait another month and a half to see the specialist. If I've survived it this far, I don't see another month or so being an ordeal. I just fear the news won't be good...surgery again, or worse, colon cancer. My former family doc said he suspected Fibromyalgia but it never went any further than that...he never did anything to rule it out or confirm it.

Crohn's Disease Diagnosis/1st emergency resection during a massively widespread blackout-August 14th/2003. Ileostomy since August 2016. Cheated death twice in 2016 during a 3 month hospital stay.


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Songbringer
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October 5, 2018 6:31 pm  

Thank you kindly John. Sadly where I live, we have a horrible reputation for medical care. In fact, when I first moved here, that was the first thing I was told...never have surgery here. Sadly, I had no choice. But, a few hours down the road from me is a very reputable hospital, and I think I am going to ask the specialist to refer me there. I will keep posted here anything I find out. It's been a nightmare suffering in silence for over 2 years.

Crohn's Disease Diagnosis/1st emergency resection during a massively widespread blackout-August 14th/2003. Ileostomy since August 2016. Cheated death twice in 2016 during a 3 month hospital stay.


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Songbringer
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October 5, 2018 9:01 pm  

Bubbles...I am sorry to hear what you went through...I can't imagine how that must have hurt. I've decided for the meantime to contact my GI...maybe another colonoscopy is in order, seeing as I haven't had one since my ostomy. I just hope someone can find out what is going on, but at the same time, I'm terrified. Thank you for the kind words and I am glad you got a resolution. How was it detected if you don't mind me asking?

Crohn's Disease Diagnosis/1st emergency resection during a massively widespread blackout-August 14th/2003. Ileostomy since August 2016. Cheated death twice in 2016 during a 3 month hospital stay.


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Bubbles
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October 5, 2018 9:45 pm  

My surgeon found it while doing my Ileostomy surgery. He said he spent 2 hours just cutting through adhesions just to start the surgery ( he was not happy) . That's when he found this strangulation. I had only had 1 bowel surgery in my life before this Ileostomy surgery. He was amazed at so much adhesions . He did the first surgery too so I told him " Hey it's your fault " . He knows I was kidding . I had open surgery not laparoscopic.

sending you positive vibes , Bubbles 🌺🌸🌺


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VeganOstomy
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October 5, 2018 11:27 pm  

I do hope that you get some answers next month when you see your surgeon. I would not be surprised if these pains are related to something other than an obstruction. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Catfinder
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October 7, 2018 1:54 pm  

Do you know if your surgeon has a Physician's Assistant (PA) or a Nurse Practitioner (NPA). Maybe you could ask to see that person -- most doctors do have one of the other these days. I am being treated at the Emergency Services Clinic where I am and I could probably call the Nurse's Triage with questions anyway. But I was at a teaching hospital so it might be easier to get in to see someone.

I would definitely try to work with another gastroenterologist -- though as a new patient you might have to wait even longer than a month. Sigh. Dealing with this stuff can be tough; so sorry you are having such problems!


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