Meet & talk to fellow OstoMates 20,329 members

New and need advice

Posted by drerose, on Sun Mar 05, 2017 11:31 am

Hi everyone.  I'm new here so bare with me.

I am just back from seeing a new consultant. Who has diagnosed me with atonic bowel/colon.

 

I've been having severe constipation for 16 years. To the point I have to manually extract at times. I also have a rectocle prolapse. 

 

She basically said I have no tone at all in my bowels. All laxatives softners don't work.

So she wants me to have 3 tests one is where I swallow some sort of tablets and then have a xray in 5 days and so on to see where they are.

Another was a surgery on my colon. That she didn't explain much. And the other was something to precisely know the tone. 

Then she said this will never get better.  And a bag is a option for me.

For 16 years I've been told I just havIbs.  Or its in my head so this has came as a shock.

Good in the sense that I now know. I've been online and can you find much info.

I asked about the bag and she said it would take away all my pain.

Surely it's not that easy.

She also spoke about removing the colon.

I wish I asked more questions but I just couldn't take in what she was saying.

 

Does anyone have any ideas or advice.

Thank you 

Reply by becrhomat, on Sun Mar 05, 2017 9:06 pm

It's all very overwhelming, I'm so sorry.  Can you take someone with you to appointments? that helps me sometimes to have someone remember or make things more clear to me.   I went for years and years trying to 'make do' and i'm so so so happy now that I have a colostomy.  No more worries about bathrooms....my social life is easier, it's easier just to LIVE with a better quality of live.  Having a bag is not that bad at all, it becomes so second nature to change it and take care of my stoma (the opening).  Before I took the leap to have surgery, my doctor recommended to me to research and talk to others...you are so in the right place!  I just had surgery last may and I was so overwhelmed with what product was what and what helps with this or that and what extras do i need....now I can figure everything out bing bang boom and if I'm not sure there's always someone to ask in real life or I can come on here and find out.  Always here for you Very Happy

Reply by NJ Bain, on Sun Mar 05, 2017 11:19 pm

Drerose,

 

  Always get a second opinion.  Also, with this day and age, turn the video record on, on your smart phone so you can go back and hear everything the doctor said.  I do this with all of my appointments now.

 

  But as becrhomat says, having a bag is not bad at all.  Hope this helps.

 

Bain

Reply by Bill, on Mon Mar 06, 2017 2:46 am

Hello drerose.

Welcome to the site and thanks for your post as it takes me back a few years.  My constipation used to be so bad that I made a gadget to 'core' the blockage (like you would an apple) before it would reduce in size enought to pass out of the anus. I too had an anal prolapse, which is perhaps not surprising, given the pressure that was being put on it.  Like you, I was told right at the beginning that a colostomy would sort it out but I was reluctant to go down that route so they did a number of other things to see if they could ease the problem. Getting rid of the heamorrhoids was supposed to help but made it worse in that it made me incontinent. They tried pulling up and pinning the prolapsed anus to the wall of my spine but that did not work because the strain of the faeces kept undermining what they had done. They tried sphincter stimulation with electrodes and that duid not work either and caused other complications. The pain was terrific and the incontinence was virtually uncontrollable so eventually I decided to have a colostomy.

It's been a few years now and I can confidently say that - if I had known then what I know now, I should have gone for the Colostomy right from the first time they mentioned it. Of course, mine is only one story of many and others might have had a different experience. However, I would not wish anyone else to go through the pain and misery that I experienced while they were trying out alternatives to the stoma approach. I won't pretend that there have been no problems at all with the stoma but they have all been resolvable without further surgery.  It has been so much easier to manage the problem from the front of my belly than it was from my anus, so I can only recommend having a stoma as being the obvious solution - Plus, it is now almost pain -free, which is an added bonus.

Best wishes

Bill 

Past Member
Reply by Past Member, on Tue Mar 07, 2017 9:54 am

Hello and welcome. First, my apologies. I did not read specifically whether you have undergone one or more colonoscopies. A scope should help the doctor establish a reliable diagnosis of your condition followed by relevant treatment. 

Your symptoms appear to be different from mine. I had ulcerative colitis for many years until it finally developed into cancer of the large intestine. From both a physical and emotional perspective I had reached the point of no return and underwent a total proctocolectomy with ileostomy. I wear a pouch on my lower right abdomen. I could have chosen to have reversal surgery but the recovery and practicality of the procedure just weren't convincing enough to choose that option, so I am now on year twelve of wearing an appliance.

I was very sick for a very long time. Undergoing surgery was difficult and adjusting to my new life with an ostomy appliance was not easy but it was the right thing to do in my case. Right now you feel miserable. You will continue to feel that way unless you find a viable therapy or undergo surgery.

If you have surgery, please know this: recovery is long and challenging but over time you will feel so much better. I know I did and other ostomates have similar testimonials.

All the best, and I truly mean that!

Mainewoods 

Reply by paulaAZ, on Tue Mar 07, 2017 1:55 pm

Hi drerose -- I agree completely about recording your doctor visits so you can go back and relisten and try to absorb what is said.  Also, do not be afraid to stop the doctor and ask questions.  In fact, start making a list of questions you want to ask at the next appointment and take that list along with a pen to write down the answers and do not be afraid to tell the doctor to slow down or explain further, etc. 

 

Now on to having a bag.  I had what is called a total proctocolectomy with permanent end ileostomy in November 2015.  To put in every day terms my doctor removed everything from the connection of the small intestine to the colon down -- including anus and rectum so I now have what is lovingly known as a "Barbie Butt" -- crack and no a$$hole Smile  I suffered from ulcerative colitis/IBS for years and years and ended up with strictures in the bottom portion of the descending colon into the sigmoid colon, and in 2015 my colorectal surgeon could not traverse the strictures ... we knew the surgery was inevitable and to be honest ... I wish I had done it years before when the stricture first formed.  My life is that much better! And the biopsy of my colon showed there was active Crohn's in the descending colon.  

As I have told many people -- I did not realize how bad I felt until I felt good again! 

My recovery was not bad at all -- I went in on Tuesday, had the surgery that day (5-1/2 hours of surgery) ... went home Friday morning and was driving 3 weeks later.  I was not 100% at 3 weeks, mind you, but each day I got a little bit more strength back and within 3 months I was pretty much back to full capacity.  I am retired but still do some work from home and during the second week after surgery I was working maybe an hour here and there each day ... but then recovery is different for each person.  

I have not had any pain like I had before the surgery -- no severe cramping, no issues with eating foods, etc.  It really does do away with the pain you are experiencing now.  I do not know what type of support you have at home but you will need someone to help you for at least a few weeks after your surgery.  

 

Any questions, just ask away ... again, it may be the thing that gives you your life back; it certainly did for me! 

 

paula

Reply by HarleyDoll, on Tue Mar 07, 2017 2:09 pm

I would consider myself fortunate that a "bag" was offered up as a solution for your problem.  In most countries (mine) you get a "bag" for cancer, or uncontrollable ulcerative colitis or perhaps diverticulitis.  Having IBS and wanting a bag is something I wanted for decades but instead I suffered and ended up with diverticulitis more than once, at which point the bag was offered.  So if you are offered a bag as a solution simply for IBS or chronic constipation my advice is TAKE IT!  Your life will change. 

Reply by bigal1579, on Tue Mar 07, 2017 4:17 pm

The key is your comment that your doc said it will never get better.  If you get a second opinion that confirms that, then you certainly do have a way to get better, and that is going for the pouch.  I have an ileostomy which I got 9 years ago at age 60.  I asked the doctor if that was kind of selling out to old age, rather than getting some other procedure, like a j pouch that would have come closer to maintaining "normalcy".  He felt it was the opposite, that getting a pouch meant I was not giving in but instead embracing life and wanting to live it to the fullest.  The reason is that an ostomy with pouch is something the medical community is now extremely good at, and the expectation is that you end up with what is basically a cure and you can pretty much do anything.  Compared to your current bowel issues, it would definitely be a huge improvement.

 

If you read posts, the people who have issues seem to universally be newbies, and their issues revolve around figuring it out and coping.  Virtually everyone who has had a pouch for a long while ends up being very happy with the outcome, as evidenced by the previous posts in this thread.  Surgery is obviously tough, but you rapidly get that in your rear view mirror.  Initially coping, and getting things sorted out, takes some time, but you should have a full expectation that a pouch really works well.

 

There is a period of transition and acceptance, but even during that period if your pain is gone, it seems like a great trade-off, and you can rest assured that once you get through the transition period, you will find that the pouch works well and has very little impact on your life.

Reply by paulaAZ, on Tue Mar 07, 2017 4:22 pm

One thing I would highly suggest is research everything you can.  There are a number of excellent videos on YouTube of ostomates showing how to change appliances (your bag).  You will find that there are a lot of products and hopefully things will work out well for you quickly as they did for me ... I found the perfect products that work for me and now change once a week ... in fact I totally forgot to change last week and went 2 weeks between changes ... but I normally change everything once a week and then am able to what ostomates affectionally call taking a "naked shower", i.e. one without the bag attached.  

 

At any rate, as I said before -- I did not realize how bad I felt until I felt good again! 

 

Reply by almelia, on Tue Mar 07, 2017 4:27 pm

I had same symptoms / problems all my life due to praplegia (born spina bifida).. 

I now have ileostomy as I had had so many sugeris over the year causing more and more adhesions - including cesarean section.

Bur,  before the ileo I had the ACE stoma. Research Ccaecostomy button or Antegrade Continence Enema: this worked well for me for 12 year without need for bag.

Take a friend and ask them to take notes if u are not cfor table recording surgeon. They can also have a list of questions and just prompt you if u forget something.

It's a big step.... but you can make a huge improvement from where u are now 😊. 

Reply by Mrs.A, on Sat Mar 11, 2017 8:55 pm

Hi drerose,

Welcome to MAO. I'm sure most of us can relate to the shock you are in to hear such news from your doctor. I must agree that it is always wise to get a second opinion.

The answers you received on this thread are all very good advice coming from the hearts of those who have been in simular situations. Take some time to understand what is going on with your body so when you make a decision that will not look back and wonder, but be glad about the choice you made. Like many here I'm very grateful to have had this proceedure and be able to continue on with life.

* Please, do not post contact information like email, Facebook or Twitter accounts, or phone number. These will be removed by the Administrator.
All times are GMT - 4 Hours
Currently online: 10    
4 members & 6 visitors
dls (f)
marty (m)
spyder (m)