Title: Seeking Advice on Bloody Mucus Discharge and Post-Surgery Complications

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Past Member

I received an ileostomy a year ago due to near-fatal relapse from ulcerative colitis. I am currently changing hospitals as for a year the surgery team kept dismissing my concerns of bulge under my stoma, continuing nausea, loss of appetite, and almost constant infections. After several hospitalizations after the surgery, the hospital finally sent me home with antibiotics 8 months after the surgery. That worked, but the infection keeps returning. 4 months ago, I expressed concern of bloody mucus discharge to which the surgery team dismissed as well. 2 weeks ago, I met with the surgeon who confirmed a hernia; to which I had mentioned 9 months ago if I had one. Currently, I am in the process of changing hospitals and doctors as the surgeon stated I will probably need hernia surgery as the location is in an unsafe location. I need medical personnel worthy of my confidence.

Has anyone else experienced bloody mucus discharge, odor from mucus discharge (to which I mentioned occurred from the beginning), extreme nausea, loss of appetite, constantly changing taste buds where foods I ate the previous week I can no longer get down?
I am thoroughly livid with the lack of attention the past year from the hospital staffs following my surgery that I am worried I am seriously ill. I will know more later this month from 3 new doctors. I should have returned to my profession 7 months ago, but I am still having issues and am not well enough to return to my career. I do not imagine this is normal from my research, but maybe other ileostomy patients have had similar experiences?

CrappyColon

Saw you're in Ohio, are you able to go to Cleveland Clinic for care even if they're the ones managing the bigger things like surgeries?

I can relate to the nausea, loss of appetite, and change in taste buds.

Do you still have any of your colon? Have they done anything to your small intestine?

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CrappyColon

If you're on Instagram, there's a couple of friends who have an account Double Baggin It (I might have the spelling a little off). I think they receive care either in Columbus or Cincinnati. It's a C and it's south of me, but I can't remember at the moment. But if you message them, they'll respond and might be a helpful resource closer to you. I know at the least the woman had some care at Cleveland Clinic in the past.

CrappyColon

I looked up their account because it was bugging me I couldn't remember which city lol. They are in Columbus.

Past Member
Reply to CrappyColon

Actually, I am in Columbus. Unfortunately, Cleveland Clinic is not an option for me as my daughter resides "back home" in NW Ohio, and she is the only one who can take care of my service dog and transport me to the hospital/procedures under sedation while my ex-husband takes care of our 2-year-old granddaughter while my son-in-law works. Thank you for responding. I have been so stressed this past year with the lack of medical attention that I started smoking cigarettes again last summer after quitting years ago. I have felt so alone!

I still have my small intestine, but when I printed off all my medical records since the surgery, I discovered SO many things that the major university hospitals dropped the ball on. I discovered my first hospitalization one month after the surgery, an endoscopy was suggested but never performed, the surgeon discovered I had anal cancer, and I have Crohn's in my small intestine, but this information was never relayed to either me or my daughter. I have switched hospitals to the Lima region, and I already have 3 appointments this month, whereas the other hospital scheduled appointments in June!
I did know I had ulcerative colitis and ulcerative pancolitis since 1984 when I was diagnosed, but I would have appreciated the recent additional diagnosis.

I still have my rectum, and the surgeon indicated 2 weeks ago that surgery may be needed to remove that as well. What concerned me the most was the surgeon did not know I had been hospitalized 5 times after the surgery due to severe nausea, extreme dehydration, and extreme weight loss. ????? I went to him as he ordered a rectal scope with biopsies without sedation. I told him I remember the 1980s when doctors performed the scopes/biopsies without sedation and it hurt like hell. He instantly became angry and suddenly became a "not my fault" doctor in regards to all my symptoms.

The constant changes in taste buds were starting to make me think I was going crazy. I had the best home health nurse ever who caught 2 near-fatal medication errors from said hospital, and she helped a lot, but even she said I should have been healing more quickly.

 
Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister
CrappyColon
Reply to Anonymous

You've gone through a lot. It really really sucks when you feel you've been failed by your medical providers, under certain circumstances/surgeries your life is in their hands- so you want to feel confident that you can trust them. If you ever do find a way to make a trip to the Clinic manageable- I have a great colorectal surgeon. She held my hand before they put me under anesthesia for both of my surgeries this past year. Thankfully, she not only is a compassionate human but a complete boss when it comes to these surgeries.

What type of service dog do you have?

How are you feeling about your new care team?

I know what it feels like to feel alone even if you're surrounded by a 1000 people. These conditions take a lot from us and then some. And then we have to figure out how to go on living-really living- despite the past and whatever the future may hold.

My Drs sent me to food aversion therapy because what I like/don't like has been so different and appetite signals are being screwy so forgetting to eat happens too often.
Something I've liked consistently since surgeries is Taco Bell which I wasn't crazy about before but now pretty much any day I could go for something from Taco Bell I swear it has to be all the sodium or something. My Dr said my body will crave what I need. I've also been adding lemons/limes to most of my drinks ‍

I am hopeful for you that you're at the right place for your specific needs now.

Past Member
Reply to CrappyColon

Funny you should mention the body signals on deficiencies. I used to know when my sugar or salt levels were low but now those signals are changing. My "back home" specialists are a 2-hour drive and I carry salt kits in my car which are snack-size bags of Cape Cod kettle chips. When I start to feel slightly dizzy, I grab those and within 15 minutes I'm better. My new doctor appointments are in a week so I am hopeful that I can be "fixed".

I have a toy poodle hearing service dog. I was born deaf but I do have 20% hearing in one ear to which a Bluetooth hearing aid assists, but I still have to rely on lip reading. The Pandemic face masks have been a blast! (Insert sarcastic font here). International Hearing Dog agency in Colorado selected and trained him for me, and I've had my partner for 4 years, and he's changed my life. My daughter is my back-up handler, which has been necessary the past year with all that has happened.
Now that I realize my symptoms are recognized by others, I now have renewed hope for my future. My goal is to get better and accept the Assistant Director's position presented to me a couple of weeks ago but had to decline when I suddenly went downhill again.

Guardian Angels are at work!

w30bob

Hi Marco,

I'm with Crappy Colon Diaries on this one, although I prefer to call her Jodi (wink, wink). You need to be seen by competent folks, and the best ones near you are at the Cleveland Clinic. They have a number of satellite offices in Ohio and I think the closest one to you is in Lodi (about an hour and a half northeast of you on RT 71N), which is an hour closer than Cleveland. Even if having surgery or long-term care at their main hospital in Cleveland (or Lodi) is out of the question, it would be worth it to you to have their team review your health records and suggest a course of action. They should only need to see you in person once to be able to accept you as a patient and then figure out what's going on, and any additional testing they want done can be done locally to you. At least then you'll know what's going on and if the docs you go to after that say anything else... you know it's time to get another doc. I've been to the Cleveland Clinic and was very impressed with their staff and care... and it sounds like exactly what you need.

Your taste buds are telling you something is wrong. If you lose your appetite, it means things are getting worse. At the very least, call the Gastroenterology office at the Cleveland Clinic and explain your situation. They may have other options for you as well. It's worth the call.

;O)

Bob

warrior

It never fails to amaze me when I read the topic of a thread here at what I find from the writer.

Your story mimics mine. My go-to fix for UC and CD was prednisone. Over 35 years on it, and still on it presently for arthritis.

These new biologicals nearly killed me, in which the doctors felt I should be their guinea pig--for years.

Then, in 2016, I found a medical team, had the large intestine removed in hopes to reattachment to the stump. That is until shortly after the ileo surgery and some 6 years later, I continued to have bloody discharge out the butt hole. (It was being controlled by various meds up until recently.)

Like you're experiencing, clear mucus is normal. Bloody not. Discovered Crohn's traveled to rectum or, more accurately, laid dormant there. Who knew?

So the rectum is scheduled to come out this May 2023.

You need to get to Cleveland Clinic, or get a referral from them. I went there because at age 25, I lost my hearing completely, and being a Crohn's patient, I needed answers and the bullshit to stop. There, they informed me the hearing loss was secondary to the IBD. I have Cogan's syndrome.

So when you mentioned you were born deaf, I was interested and am still interested in "hearing" that story.

I acquired deafness post-lingually. Have a cochlear implant but it only gives me about 10% as a lifetime member of the "speech reading club," like you.

What age did you lose your hearing? When was the diagnosis of IBD made? You have my full attention, kiddo.

------Warrior from NJ

Past Member

I'm finally starting to feel not so alone! I've always been different all my life being deaf but my parents refused to place me in a deaf school. I was born without the hammers, anvils, cochleas or eardrums. I have very short Eustachian tubes in the shape of the letter S. I have 3 forms of deafness, one of them being nerve deafness. Cochlear implants are not an option. So after years of speech therapy and learning how to place myself in situations along with lip reading and learning acoustics within rooms I have been able to fool people for years. I have been accused of faking it, even by a horrible boss until I pulled out my latest hearing test to prove my situation. I do not utilize ASL. Actually growing up in a small rural town who was I going to sign with? I was the only deaf child there.
I was diagnosed with UC at the age of 19 in 1984, never been in remission until 2019 when I was on Entyvio for a year. Unfortunately the side effects almost killed me as well. I went on medical leave 3 times for a total of six months. When I experienced a dangerous eye infection that almost rendered me blind I stopped the treatments. Now I cannot drive at night due to the damage. The bone and joint pain was unbearable but at least I don't need a walking cane now. The permanent hair loss is upsetting because I always had pretty hair. Now I wear pretty chemo caps! No more 20 minutes styling my hair and no more 200 professional salon fees every 3 months so it worked out! I discovered I was a test patient like you. One of the chemo nurses confirmed my suspicions.
At some point ulcerative pancolitis appeared as well. Drs have been on the fence if I also had Crohns. Apparently that was confirmed during the ileostomy surgery when I printed off all my medical records last week. SO many times I read where the doctors dropped the ball and kept dismissing my concerns. I know enough about medical terminology to understand where they went wrong and why I have been so sick this past year. I truly wish I could go to Cleveland Clinic. My daughter was born with a rare heart defect and 4 months after my surgery last year she went into cardiac arrest 15 minutes after I got her into the ER. Thankfully she was resuscitated and was life flighted down to Columbus where I reside. However she has been experiencing severe PTSD since that incident and she is terrified to drive. She and her husband have a 2 year old daughter and she has no one to trust to take care of their daughter while her husband works in order for her to take care of my service dog and to assist me in Cleveland. So I need to stick with Plan B so I am near her home. My son in law lost his job last year when I was hospitalized with the surgery and my kids stayed with me for 2 months to take care of me. He finally got his job back but I can't let him lose a good job again because I'm messed up. He's a gem and I love him too much to do that to him.

So starting next week I will be meeting with 3 more drs "back home" to see how I can get better. The worst part is not being able to return to my career. I was head hunted 3 weeks ago for a very good position with a huge salary increase. Unfortunately I had to decline because I was going downhill again. I am beyond frustrated and livid. I entrusted this hospital with my life. I am still on the fence which year was worse. The chemo year or the surgery year. I know we are to accept the hand we are dealt and strive to continue. Just some days I ask if I can get just a little reprieve once in a while. LOL! But I tell my daughter-if you couldn't handle it, you wouldn't have it. We are much stronger than we realize.
It's very interesting the similarities in our stories. Your experiences give me hope. It may be a tough road ahead but I will endure.

gentlejohn

Yes, I had similar symptoms from my retained rectum. The inflammation is still there. Typically, mesalamine suppositories with or without cortisone suppositories are the management of choice.

gentlejohn
Reply to CrappyColon

Agree.

Ostomate & woundr

If she has not retired, I recommend getting a consult with Dorothy Doherty at the Cleveland Clinic. I have never met a more knowledgeable WOCN who is also an ostimate.

warrior
Reply to gentlejohn

I would agree with you, Gentle John.

But it is a temporary solution.

Tried that steroid foam. Blew completely out my ass in ten seconds.

Suppositories didn't help.

Aren't you concerned about the risk of cancer in a dead rectum?

warrior
Reply to Anonymous

Thank you. Will reply tonight.

I'm very interested in knowing more as I can relate.

Indeed, definitely.

Past Member

In-deaf-initely! Now that's funny!! Hearing loss is frustrating but throughout my life I've learned to laugh! If I didn't, my sister will.

Past Member

In-deaf-initely! Now that's funny!! Hearing loss is frustrating but throughout my life I've learned to laugh! If I didn't, my sister will.

dawnieangel

I've been concerned about the rectal discharge I've been experiencing. My iliostomy was back in October, a result of a perforated bowel. I had been experiencing problems for over 18 months before that, IBS or Crohn's but no definite diagnosis. Just had extensive blood work and am doing a CT scan this week, should be discussing the results with my gastro next week. I got the impression he might be checking for Crohn's, had no idea it could still be in my rectum. The discharge has odor and sometimes is light green or reddish. At least I can ask some informed questions now, thank you!!

warrior

Discharge from a non-functioning rectum green? That is a first.

My bag, I see green output which I believe is normal due to small bowel... but... green from rectum? Nope. 6 years, never green... red bloody, yes... but nope... no green. Very strange that it is going even if intermittently. Get that checked.

I was told and believe Crohn's travels. If now it's in the dead rectum... and rectum will be removed, I'm concerned if this will cure my situation or will it go someplace else. Scary, but mindful.

w30bob
Reply to dawnieangel

Hi Dawnie,

Crohn's can manifest anywhere from your mouth to your ass, simple as that. Ulcerative Colitis is really just a less severe form of Crohn's that appears in your colon. But it's really all the same shit.......no pun intended. It's your body's immune system attacking your bowels. When it's only minor, causing inflammation of only the innermost layers of your intestine........it's called UC. If it gets more severe and involves more layers........all the way to the outermost.........it's called Crohn's.

Rectal discharge is typically just mucus that is normally secreted by the colon, and is mostly clear in color. Red discharge is obviously blood (which could be from a variety of reasons) and not a good thing.........and green discharge usually indicates infection.........also not a good thing. I'd call your Gastro and ask if they'd like you to bring a sample of your green discharge.....and see if they want you to have bloodwork done. Any lab could easily identify what your discharge really is, and routine bloodwork would indicate if you have an active infection going on. A scoping wouldn't be out of the question either. Get it checked out, as these things don't normally fix themselves.

;O)

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