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Help! Recurring prolapses, blockages, stoma hernia  

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Bee
 Bee
(@veggie-bee)
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April 19, 2020 11:25 pm  

Hi! 

Background: August 2017 I had surgery for ileostomy with colon removed, except for sigmoid/rectum due to complications from Ehlers Danlos Syndrome (a connective tissue disorder). I have been getting sporatic, without warning, prolapses (about 5-12 inches comes out) occurring anywhere from 1-4/5 times weekly, and also frequent blockages (sometimes with hours of vomiting). I also have gastroparesis, peristomal hernia and hiatal hernia. I am 34/f

 

Anyways, I was wondering what sort of diet is best for people prone to prolapses and blockages? I drink 1+ liter of green juice daily, 4 eggs, and dinner is usually pea/avocado hummus (hummus made with avocado and peas, no chickpeas due to gas), blended broccoli, blended fish, and rice cakes. Sometimes I'll have a sweet potatoes with coconut cashew sauce for dessert, but had to stop bc it doesn't digest, even if super soft and blended. I literally juice or blend majority of my food and I still get prolapses and blockages. I take various supplements but still struggle with malnutrition, hunger, severe bloating and pain, and inflammation to name a few. They are super painful, debilitating, make me go thru supplies too fast, make me gain weight very fast due to inflammation when I flare nonstop, makes my malabsorption/malnutrition worse, and makes me feel very stressed due to the stress it places on my body (cortisol).

 

I also want to know what exercises are best for healing this and what things to avoid. I enjoy Wt lifting bc it helps my EDS, gastroparesis, and makes my core stronger, but worry I'm making things worse (especially not having access to machines since gyms are closed). Any physical therapy exercises that may help? Any other things like diet, supplements, devices, anything... I'm struggling quite badly with this and would love any help anyone can offer. 

Thanks so much

Colectomy+Ileostomy due to Ehlers Danlos Syndrome. 8/9/17


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john68
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April 20, 2020 2:42 am  

Hi veggie, I am sorry to hear of those issues. If it was just diet or you where just out of surgery I would say stick to low fibre diet. I think with the combined problems you need to be in contact with medical help. As for exercise and especially weight lifting I would leave until getting more medical advice. Best wishes for a solution.

ileostomy 31st August 1994 for Crohns


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Bee
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April 20, 2020 6:27 am  

@john68 thanks for the reply! Yeah, you are totally correct, and I agree that seeing a professional is key, but unfortunately, quite impossible for a long time in my situation. I recently moved to another country (thus I was not eligible for medical care for about 2-2.5 years right after my surgery), and then the pandemic hit, thus no access to medical care pretty much at all (I don't even have a primary care doctor or anything, and won't for a while due to this). The only thing I was able to do was get iv nutrients weekly from an naturopath, but those stopped in March. Those helped a ton! Without them, my symptoms are way, way worse. 

I was hoping for some suggestions in the meantime, as medical care is being sequestered for the pandemic, and it's nearly possible to get regular appointments or even seen by anyone at this time. And where I live, it can be quite the wait to be seen, even without a global crisis occurring. 

Thanks again for replying and I hope you are staying well during all of this! 

Colectomy+Ileostomy due to Ehlers Danlos Syndrome. 8/9/17


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john68
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April 20, 2020 9:18 am  

Hi Veggie, Thanks for your good wishes. Eric is a great believer in keeping a food diary so you can track how different foods are maybe causing problems. Vitamin drinks would be good and plenty of water. You have really been left between a rock and a hard place!! I don’t want to be nosy!! But there are members here from all around the World. Someone is bound to know away you can excess help.

ileostomy 31st August 1994 for Crohns


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VeganOstomy
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April 20, 2020 3:29 pm  

@veggie-bee I'm so sorry to hear of your circumstances, especially with the timing of this pandemic. 

Many of your concerns do and should warrant having a healthcare professional help you, but I also understand that this is not an option for you right now. 

For diet, as John suggested, I would continue on a low-fiber diet and do the best that you can by adding a variety of foods into the mix. Supplements are a tricky one and I usually don't recommend anyone take supplements unless their bloodwork shows them to be deficient and if a modified diet isn't helping. 

When I wasn't able to eat as much due to illness or surgical recovery, I did rely on nutritional shakes to boost my nutrition. If you have the option, consider a whole meal replacement product (not just a protein shake) to either have on its own or blended with other foods. 

I hate to say it, but if the cause of your blockages is more mechanical in nature (i.e. due to your hernia or prolapse) then you may not find much relief through diet, but I hope it helps. 

For exercise, especially because you have both a hernia and prolapse, it's far more important to avoid any that engage your core too much. Yes, this may be limiting, but the goal is to strengthen your whole body without specifically targeting your abdominal muscles. I know some people like to start off with Yoga or something similar, but I would not be adding weights to your routine. Are you using any kind of support belt or accessory for either your prolapse or hernia? 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Bee
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April 20, 2020 3:38 pm  

@veganostomy

Thanks so much for the reply, Eric! You and John have been very kind with your help. 

 

Yeah, it seems my issues are mechanical (as well as nerve related)... Would the only option be surgery? In that regard, I have my sigmoid and rectum (which aren't great due to adhesions and rectal Prolapse) but do u know what the quality of life is like if the small intestines is connected to the sigmoid/rectum (ie continence issues, transit, any other potential things I may need to be aware of)? Otherwise, I assume the doc would remove the Prolapse portion (since it's essentially not usable) and make a new stoma? Ideally, I want to avoid mesh bc of the horror stories 

 

I don't have any accessories for my stoma... I'm not sure which I'd need or how they'd work, and I don't have the money to try various products if they don't work (and can't send them back). Are there any in particular that may help? 

 

Thanks for the help! I really appreciate it! 

 

 

Colectomy+Ileostomy due to Ehlers Danlos Syndrome. 8/9/17


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sjlovestosing
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April 21, 2020 7:54 am  

Hi Bee,

I'm sorry to hear of your troubles. Regarding trying products for your stoma, you can get in touch with manufacturers of stoma related products, and they'll send you free samples. However, you  should talk to your stoma nurse or doctor first to see what they would recommend. When I was a new colostomate and found that a flat barrier was not working, my nurse recommended various solutions until I found the system that I am currently using. I hope this helps some.

God bless,

Stella

 


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VeganOstomy
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April 21, 2020 11:17 am  
Posted by: @veggie-bee

Yeah, it seems my issues are mechanical (as well as nerve related)... Would the only option be surgery?

That would be between you and your surgeon to decide, but I often think that if anyone's quality of life is affected that much, surgery should be an option to consider. 

... but do u know what the quality of life is like if the small intestines is connected to the sigmoid/rectum (ie continence issues, transit, any other potential things I may need to be aware of)?

Generally speaking, the more gut you have to connect, the "better". A shorter gut will lead to more frequent bowel movements and looser output. You have more to work with than most, but your hernia and prolapse complicate things. 

I don't have any accessories for my stoma... I'm not sure which I'd need or how they'd work, and I don't have the money to try various products if they don't work (and can't send them back). Are there any in particular that may help? 

I have a guide that covers many accessories, but your stoma nurse may get you to wear a hernia support band or similar. These would need to be fitted, and they can increase the risk of prolapsing, so I would not just get one without consulting with a stoma nurse first. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Bee
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April 21, 2020 2:55 pm  

Thank you both for your replies!

 

Unfortunately, I don't have a stoma nurse or any doctor bc I moved to another country 3 months after my surgery and wasn't able to access medical care since then. (yeah, not the best timing for the move, but what can ya do?) Now, I am eligible for medical care, but the pandemic hit and I can't set anything up at the moment (and who knows for how long). Thus, I'm in a pickle. But yes, seeing a stoma nurse would be helpful when I am able to do so. Thanks so much! 

Colectomy+Ileostomy due to Ehlers Danlos Syndrome. 8/9/17


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john68
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April 21, 2020 3:19 pm  

Hi Bee, Some hospitals are doing online appointments. While it may not be hands on it would get you talking to a stoma nurse 

ileostomy 31st August 1994 for Crohns


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