I'm new here but the Dr. has brought up "the bag

Replies
10
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324
hvansickle
Apr 07, 2024 2:24 pm

I'm new here and really scared as most of you have probably experienced! I've had severe rectal pain for two years and my doctors have tried everything to identify the problem. As a result, I'm extremely swollen internally and have difficulty having a bowel movement. Have any of you experienced anything like this and did getting "the bag" resolve the pain?

I'm in WA State and was so relieved when I saw this group - thank you!!

TYIA!

warrior
Apr 07, 2024 2:42 pm

Wow... some story. Unreal. Difficult to answer...

Welcome. You are in the right place. Sit tight. Let's start:

No mention of IBD... cancer... just bowel pain. Constipation?? 🤦

No real diagnosis? No family history? 🤦

So let's give you a bag!! Geez...

Your transmission is blown. Let's just replace the engine. 🤦

I'm sorry. That sounds mean...

But their attempt is guessing here... biopsy showed nothing?

You realize having a bag is just storage for your poop?

Your rectum will be removed. Sewn up. This is major surgery to be supported by only a guesstimate.

Please get a 2nd opinion.

I never heard of bowel pain without a diagnosis. So... this might be sadly a first case.

Also, it's specific pain... rectal... not abdominal.

Something is obviously wrong in that area no one can find, it seems.

You really have my sympathy because many of us go misdiagnosed... if even diagnosed. Be strong. Get a diagnosis.

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Morning glory
Apr 07, 2024 3:56 pm

I agree with Warriors' answers. You should get a second opinion. You need to get to the root of the problem.

aTraveler
Apr 07, 2024 6:08 pm

There is no such thing as trivial surgery since complications can arise at any time. I certainly would not undergo a life-altering procedure as a means of troubleshooting. You mentioned severe internal swelling, rectal pain, and difficulty having a bowel movement. Is the pain constant or intermittent? Have you ever seen blood in your stool? You mentioned that your doctors have tried everything; you need to know everything they have tried/ruled out (e.g., internal hemorrhoids). My daughter recently had a friend die from uterine cancer that the doctor misdiagnosed as fibroids. Doctors/surgeons don't always get diagnoses correct. I once had a sleeping illness where I would fall asleep at unpredictable times (e.g., once woke up on an interstate highway straddling two lanes). The doctor tested for everything he could think of, to no avail. On my last visit to see him, he concluded it was psychological! Fortunately, a doctor in the adjacent office overheard the conversation and came over. He stated he had read about a similar case a few weeks earlier in a medical journal. He stated the problem was due to a carbohydrate imbalance. After correcting my diet, the problem went away. Obviously, none of the doctors that checked me out considered this possibility. You owe yourself the opportunity to try and find the cause rather than attempting a guesswork surgery. The surgery may be required, but you will feel better after truly exhausting all options. Your doctor may have tried everything he can think of, but that doesn't mean that everything has been considered.

Hisbiscus
Apr 07, 2024 6:57 pm

Hi,

I had extreme constipation and painful rectum spasms for 4 years. I saw urogynecologists, gastroenterologists, and many doctors. I even did physical therapy for it because I had a very small rectocele, but they doubted that was it. They found an ileus on a CT from the emergency room, and I could not eat at that point. I was in emergency rooms at least 3 times a week, and X-rays showed I was backed up every single time. I was already on multiple laxatives, and GoLytely was my friend, but that even stopped working. They treated me horribly and sent me to a psychologist who saw in my chart the diagnosed ileus and told me I was not being treated right there. So yeah, an ileus patient being accused of being crazy. After that psychologist appointment, I went to a different hospital where I was helped right off. First to a urogynecologist who brought up a bag and referred me to a colorectal surgeon. I was given a temporary loop ileostomy as a test to see if that would help me. So I got the temp, but because I still had my colon, I produced mucus, and now the mucus balls were hardening just like the stool. My rectum was still going off, but I was able to poop now and about 75% better. They did a colonoscopy while I had the temp, and the doctor had to abort it due to, he said, I was thoroughly packed with mucus balls. He said he tried cleaning them out but could not get them all out because there were so many. He said for some reason your colon is not working; it needs to come out.

A few months later, I was in getting a total proctocolectomy. Removal of my whole colon and rectum. I also asked to take out my appendix, and the doc agreed it was a good idea. It was a huge surgery, and he took down the temp ileostomy and made my end ileostomy on the other side. I wound up with ileus, as many of us do after surgery, but after that cleared, I'm doing great! This was back in 2018, and no issues like that any longer. No more rectal pain or anything. No mucus balls because I now do not have a colon.

The choice is a personal one. Ask questions, read up, and decide if it's best in your case and, as others mentioned, get a second opinion. If you are female, you may want to see a urogynecologist as well to make sure your problem is not a female prolapse of any female organs. They have a special scan to look and tests. In my case, they never found out why my colon stopped working, but they did give me a solution.

 
How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister
warrior
Apr 07, 2024 8:27 pm

It always puzzles me that after a doctor appointment, a procedure, or even labs being done, you, the patient, do not get a report of it.

My G.I. doc, after an office visit, gives me one. Boom. Right there. I call it a summary receipt. Times are changing. This should be the thing now.

A summary. Ask for it. I didn't have to ask. Nice, huh?

These darn portals offer that, but seeing several docs and needing several passwords is whack.

I met someone who "thinks" they still have a colon after a permanent ileo. You think? WTF?

You have to be your own advocate in these special cases that "doctors don't know."

 

I find it unacceptable that in today's computer-led society, a doc can't key in certain symptoms and get a clue, a name of an illness.

Wait, WE CAN DO that. Google and medical hospitals are there to be researched online.

Go get busy. The life you save may be your own. Advocate.

Hisbiscus
Apr 07, 2024 8:36 pm
Reply to warrior

Hey warrior. At my hospital, we have the MyChart feature. I can not only see the receipt you speak of, but I can also read the doctor's notes. I can also read my CAT scan and MRI reports and all my blood work results. I actually just found out I have severe atherosclerosis by reading my recent CAT scan, and no doc has mentioned it to me. So off to cardiology, yes advocating for myself.

warrior
Apr 07, 2024 8:47 pm
Reply to Hisbiscus

Bazingah! 😊

But your personal doctors also have their own MyChart portal, right? For office appointments, yes?

And you have how many personal doctors? I have 5 right now.

Jokingly, I said to them, "I pay you today. I get my report now today."

I have a hate-dislike attitude towards computers. 🤦

 

(Several moments later... Yeah, I have read MyChart summaries and see stuff—things—printed by my doctor that we never discussed. So, at the second appointment, I bring those things to his attention, highlighted, showing him what he wrote.

"Oh, that's nothing to worry about."

Really? That's your Mercedes I saw parked out front. Mind if I loosen the wheel nuts? Nothing to worry about, doc.

Hisbiscus
Apr 07, 2024 9:12 pm
Reply to warrior

I totally get what you say. We have a broken healthcare system. Mine does have the ability to put in symptoms and see what they can check for as I had a great primary care doc who used that feature. Ultimately, she left to go work at the VA hospital. Good docs are hard to come by these days. I have about 10 docs at the moment, but that includes specialists I have to see periodically. 

Haha, I've got that answer about it's nothing to worry about as well. I have a pancreatic cyst that's growing, and the doc did not even realize it's growing till I made him look at the scan from when they first saw it. Speaking of that, it was found accidentally, and no one brought it up till 2 years later when I took an appointment with a resident who brought it to my attention after going over my records. He says, "You have that pancreatic cyst. Are you having that followed?" I'm like... say what? What pancreatic cyst? 

 

DexieB
Apr 08, 2024 2:24 pm

If you have not already, please see a colorectal surgeon for a second opinion. If I had seen one before having a procedure done that was recommended by my colonoscopy doctor (a general surgeon who found my colon cancer), I would not have had to have an ostomy for 8 months. But because I did not know the difference (had never dealt with anything like this before) and I was terrified because I had cancer, I did not research my options well enough and went ahead with a procedure that I found out later from my colorectal surgeon was high risk and the absolute wrong course of action. So a colorectal surgeon might help, because they are much more knowledgeable. Best of luck, sending hugs!

AlexT
Apr 08, 2024 8:27 pm

Figure out what's wrong before anyone starts adding accessories to your waistline.