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

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 Dr's 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!

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 u 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 questimate. 

Please get 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  cause many of us go misdiagnosed..if even diagnosed.   Be strong.. Get a diagnosis. 

 

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

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 Dr's 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 Dr. misdiagnosed as fibroids. Drs/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 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 Dr 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 Dr may have tried everything He can think of, but that doesn't mean that every thing has been considered.

Hi,

I had extreem constipation and painful rectum spasms for 4  years. Saw urogynecologists, gastroenterology 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 xrays showing i was backed up everyvsingle time. I was already in multiple laxatives and go lightly was my friend but that even stopped working. . They treated me horribly and sent me to a psycholigist 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 appt I went to a different hospital where I was helped right off. First to 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 mucous and now the mucous 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 mucous balls. He said he tried cleaning them out but could not get them all out because there was 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 doc agreed 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 mucous 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 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.

It always puzzles me that after a doctor appt. or a procedure or even labs being done..that..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 for it. I didnt 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 perm ileo.  You think? WTF?

U 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 that 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 maybe your own. Advocate. 

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 doctors notes. I can also read my cat scan and mri reports and all my bloodwork results. I actually just found out I have severe arthlesclerosis by reading my recent cat scan and no doc has mentioned it to me. So off to cardiology ,yes advocating for myself. 

Bazingah!😊..

But yur personal Dr's also have their own mychart portal right?  For office appointments..yes?

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

Jokingly I put to them.. I pay u today. I get my report now today.

I have a hate-  dislike attitude towards computers. 🤦

 

( several moments later....yea I have read mychart summaries and see stuff -things- printed my doc and I never discussed..so 2nd appt I bring those things to his attention..highlighted...showing him what he wrote.

" oh that's nothing to worry about".

Really? That yur Mercedes  I saw parked out front. ? Mind if I loosen the wheels nuts? Nothing to worry about doc. 

I totally get what you say. We have a broken healthcare system. Mine do 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. Ultimatly 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 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 its growing till I made him look at the scan from when they first saw it. Speaking of that, was found accidently and no one brought it up till 2 yrs later when I took an appt 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? 

 

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!  

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