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Please can anyone help- I am feeling so helpless

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Posted 5/22/2020 9:09 PM (GMT 0)
Hello

I had my loop ileostomy placed in November last year. It has transformed my life for the better.

However, it is now 6 months since surgery and I have passed NO mucus whatsoever when I was told I would pass a lot. I never had a follow up from my surgical team- they discharged me before I left the hospital. I was then seen by my gastroenterologist but they were unsure what to do. They were meant to be talking to me on the phone last week but it got cancelled. They told me I could speak to someone in June but that got cancelled and the earliest I can even SPEAK to someone will be the end of August. I have tried everything- but there is simply no other options- I will be ringing as much as I can because the secretaries are not passing on the messages- they just treat me like I am a piece of annoying dirt on their shoe and I am not a rude person but I am scared.

I am getting awful pain- the cramps are very intense. I cannot insert tampons now when I previously had no issues due to the pain. I am getting fevers where I am sweating and then shivering. I feel there is a huge pressure and great discomfort. I am certain these symptoms are related to the fact I have not passed anything at all for now 6 months.

Even when I can speak to my gastroenterologist in August (which will then make it 9 month) I will then have a very long wait till I can see a colorectal surgeon where they discharged me because I am not in the system- pre COVID it was an 18 month wait to see a surgeon for non-cancer and then 18 months for surgery from that appointment date- that is if you are lucky- with COVID it will be several years I expect.

Therefore please can anyone tell me if they have been in this situation where they have not passed anything for an extended period as I cannot find anyone who has gone longer than a month before they were given treatment.

I am complex unfortunately, I cannot have suppositories as they just do not stay in. Enemas and irrigation is a high risk of me getting a perforation. I also believe they will be totally ineffective due to the fact anything in my colon is most likely to be completely dried and stuck.

Thank you for taking the time to read my post, I appreciate absolutely anything as I am in such a desperate situation- I am worried I might have diversion colitis or perhaps an infection and I am worried this could develop into a dangerous situation.
Posted 5/26/2020 1:30 PM (GMT 0)
First of all, I find it hard to believe that there were 49 views to this post and not 1 reply. Hey people!

Also, it appears that you are living somewhere where there is government sponsored health care like Britain, Europe, Canada or Australia. What a testimony to free health care!

There is definitely something wrong with your plumbing. I've had my ileostomy and stump for 14 years and have had a flow of mucous all during that time, although it has diminished considerably over the last few years. My situation is a minor nuisance.

My recommendation is to get out of town. Move to the good ole USofA and get some good health care.

Good luck!
Posted 5/27/2020 9:28 PM (GMT 0)
From my layman's perspective, it seems like you have a raging infection going on. A visit to a major hospital's emergency department might be your best option at this point. I'm in New England where most hospitals have returned to their normal chaos, accepting non-Covid-19 patients. Perhaps they have where you are too.
Posted 6/2/2020 7:23 PM (GMT 0)
Hello and I hope you are feeling better.

Proctitis of the rectal stump or other parts of the colon (diversion proctitis) is common but many people are also asymptomatic. The first couple of years after surgery, I didn't pass any mucous. It's not something that is painful, it's a normal response to a atrophic organ. Based on the information given, you have a loop ileostomy, but I don't know if you are already connected with either the large/small to the rectum. If you are, you are not to use any suppositories in that area because of the anastomosis.

That said, I believe you need to make an appointment (call for advise) with the surgeon ASAP. Something else is going on. Fevers and your other symptoms don't correlate. You can also call your ostomy nurse for advise. From my experience, gastroenterologists aren't knowledgeable about issues like this, your surgeon is best avenue.

Post Edited (windy city) : 6/2/2020 1:52:06 PM (GMT-6)

Posted 6/10/2020 11:31 PM (GMT 0)
Hi. I am so sorry you were so sick..I am hoping this is resolved?? I am having issues with rectal stump and I also am have g problems with NP not letting me communicate with surgeon. I know the frustration.
Really hope you are feeling better?
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