Hi Redanne, Welcome to the forum, Have these surgeries been done by the same medics, maybe a second opinion is needed. Is your output very thick. The rest of your experience will help give a clear picture.

@john68

Yes same docs. But he works with a huge team so I’ve had a lot of input on my case. I think I’ve had many opinions by now.

My output is not very thick at all. I’m 2.5 weeks post op and can hardly eat. Everything seems hard to pass but it is passing. Is the Pressure at this point still healing?

Hi Readann, does the stoma look healthy, also are you allowing room for the stoma when cutting the wafer. 

@readann...hello there! I'm sorry your having a tough time! I  had a lot of what your talking about but  one ileostomy surgery. Because you have had three  surgeries  and are experiencing these issues,  you may be dealing with swelling at the sight.  Mine left me with a  large bump at the sight but it was not a hernia or anything like that, just lots of tissue, skin and muscle swelling. It was painful anytime something tried to come out,   gas or output.  Thick or thin.

The swelling I could feel was the size of about 1/2 a large orange. It helped if I used a warm hot  water  bottle with a soft cloth protecting my stoma from the heat, and also ice packs, but not the solid kind. The bean bag or little bubbles in them, dollar store bag too. They are smaller and a couple meant they were always ready. Warm below and around your stoma with the water bottle keeping the stoma free from pressure to allow anything wanting to sneak  out while it is relaxing  with the warmth of the bottle.  

You have had a lot going on inside and it can take time for the swelling to diminish. Get the "rest" your body is telling you that you need and drink  those fluids, but also as hard as it can be when we feel restless, be patient with your guts for healing them. I feel I should warn you it took about 4 months for my tummy/stoma issues to settle down, the swelling is nasty and I understand your frustration  with it and  the pain. As I healed I was able to apply a slight but simple pressure to my tummy area to help move the gas or output around a bit. Check with your doctor about a gentle massage in the area and ask him/her how your guts are laid out in you now with the surgery. Even gentle massage too soon can cause bleeding and more swelling so keep hot water bottle pressure light and do not fill to full,  just heat a bit more frequently. All the best and do not be shy with what you learn that may help someone else. 

Linda

Welcome to the forums @readann.

I'm sorry you've been having such a hard time.

Pressure for me usually means a partial blockage, but being fresh out of surgery, pains tend to be normal.

Gas pains and discomfort were common for me after surgery, but they eventually went away. 

When you are passing output, do you find the quantity is expected or much less? 

@john68

Yes, it looks good (save for some finicky stitches since I’m a few weeks out), and wafer is good.

@dlkfiretruck

Thank you for your thoughtful reply! I do some massage but it doesn’t help much. The warm blankets or heating pads or bottles don’t seem to help but I’ll look into a little beaded pad.

i am hoping and praying to the gods that you are correct that this might just need more time because things are awful right now.

@veganostomy

I definitely don’t have a blockage — we checked with a ct recently. Output seems okay and I’ve recently moved from tpn to tube fed and the feeds are flowing through. 

I tend to read all these stories that pressure and gas and pain are normal for a couple weeks post op then disappear but for me it seems to be taking much longer! Sometimes it get unbearable. That’s why I’m in hospital for the last couple months and on feeds as well (though mid-stay it was revised). 

@readann

I hope it's just a waiting game since no blockages are suspected. I'm sure it's been quite frustrating for you. 

I know you mention that you have motility issues but they are not related to this current issue. I'm wondering if it's at least partly to blame as I would imagine any motility issue would cause problems. Does your pain come in waves or is it constant? 

@veganostomy

I imagine it’s related somewhat. Both waves and constant — like the constant can last hours and hours. Sometimes it’s just because I have to poop though or my stoma seems fk be thinking about it! Do you ever find with your stoma, that during peristalsis, it gets smaller and firm/hard to the touch rather than laZy and flaccid and soft? Sometimes it seems to get stuck in that mode but maybe it’s normal for that to last during peristalsis.

edited to add: I was looking at your videos again (which I’ve referenced a lot) and your articles. Seems your stoma sometimes looks fleshy and soft and sometimes firmer snd narrower, sort of what I am talking about. Does that make sense for you  too, then?

Hi Readanne, I know at the very start I found the feeling of the stoma moving very strange. I can’t say it was painful but I know my little guy can be hard and move a lot while passing out put. It’s part of the process. 

@john68

Thank you. Maybe there is still some hope and things will improve.

Posted by: @readann

I was looking at your videos again (which I’ve referenced a lot) and your articles. Seems your stoma sometimes looks fleshy and soft and sometimes firmer snd narrower, sort of what I am talking about. Does that make sense for you  too, then?

My stoma changes in appearance depending on a few different factors: my hydration status, time of day, whether I've got a partial blockage, etc. 

Generally speaking, when my stoma is hard and smaller/shrunken, it's usually a sign that stool is having a hard time coming out (i.e. partial blockage or thicker than normal output). 

Hi readann,

are you still active here?

I saw your post and I suffer from the same.

Would it be possible to ask you a question?

Thanks a lot!

Best wishes 

Maren