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has anyone had ostomy because of chronic constipation, pelvic floor issues with obstruction?

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Posted 1/11/2017 8:15 PM (GMT 0)
I am brand new here so hope it's ok to ask for opinions, advice or suggestions. I'm 63 and have had digestive issues (Irritable bowel/spastic colon, something I always thought of as a catch-all dx) most of my life. The past few years have gotten progressively worse (I'm wearing out). I have done the whole gamut with laxatives, enemas, medications, physical therapy, biofeedback, manual manipulation etc. etc.! I had Barret's esophagus and an ulcer (both healed) and have had my esophagus stretched 3 times. I've also had Thyroid issues (destroyed w/ radioactive iodine in 1999) and unfortunately many years of inadequate care for Graves Disease. Add fibromyalgia, arthritis, depression, anxiety, PTSD but other than that I'm in perfect health. I thought everything would get better once I faced everything at hand, ask for help and get in good physical condition. I lost over 50#, which is a feat considering out of control thyroid issues, plus workout and sauna nearly every day. I am in the best condition I've been in since my early 30's. Still, can't have successful bowel movements for a week, 10 days or even more. I am a bit freaked out about where the toxins are going in my body, so that's why I am admittedly addicted to the sweat of the workout and sauna). I have been referred to a surgeon twice. I previously decided to "pass" on the surgery for rectocele w/ obstruction because of such a poor success rate. I knew that at some point I may be looking at a bowel resection. With all things considered, they recommend an Ostomy... I was a little taken back so have done tons of research. (Yes, I have had all the suggested tests done). I am in the midst of a Sitz Marker test as I write. I will have the final x-ray on Friday. This is day 10 without a BM so needless to day I'm miserable. Depending on the location of the markers, I'm told it will be the determination to do a Colostomy or Ileostomy. I know there have been lots of medical advances so I do trust the doctors... in fact, I am incredibly grateful for the team of doctors I have. I have read so many stories about people suffering from Crohn's ,IBS and such horrible debilitating conditions so I think my problems are insignificant by comparison & don't want to whine. I would like to find out if anyone had a similar experience and/or advice about what to expect.

It's a little overwhelming to because it's sort of like the chicken and egg debate... what is causing what and how will it all come together. Wish there was an advocate that could take the results and suggestions from all the doctors and put it all together... know what I mean?

Sorry about being long winded... I'm just a bit nervous.

Thanks for being there... you're appreciated!!

Vicki
Posted 1/12/2017 3:58 PM (GMT 0)
Vdahl:
From reading your post, I would think that the pain and misery of your bowel defecation distress would be far more discomforting than having an ostomy + stoma.

I have had my ileostomy for 5 years, due to an acute perforation owing to long-term use of corticosterids and tissue thinning.

Having an ostomy + stoma is, quite simply, NO big deal. Actually, there are advantages to having an ostomy. I never have to worry about constipation. I never have to fret about the timing and social angst of having a bowel movement when out-and-about.

Ostomy products are technically quite advanced. Low profile, discrete, and move with the body. There are oodles and oodles of ostomy products and accessory items. It does take some time and research to find the ideal pouching system, but the processes and learning is invaluable.

The United Ostomy Association of America (UOAA) also have an information web site and support forum. This site was a personal life-line in the early days following my surgery.

I would think that ostomy surgery could be quite relieving and life-affirming for you. Sending you best wishes for a best possible outcome,
- Karen -
Posted 1/12/2017 9:22 PM (GMT 0)
Hi Karen,

You are the BEST... I thank you so very much for taking time to talk to me. I have been told exactly the same thing by a lot of people, but unfortunately none of THEM have gone through it themselves - only known someone who knows someone. BUT even their point it well taken with regard to comparing the Ostomy to what I go through now. I have become so accustomed to not feeling well that I have feared I may not recognize it. YET - I am incredibly grateful because I know it could be so much worse and am rather excited to embrace life.

I am humbled too. I hope I'm not being inappropriate by admitting I noticed you are receiving palliative care. It moves me that you're reaching out to make others feel comfortable. I would sure like to let you know I surely intend to do the same.

Thanks again, Vicki
Posted 1/14/2017 8:49 AM (GMT 0)
Vicki:
I am glad that I could be of some help.

I am 56 years of age, and had my emergency surgery when I was 51. It was no cake walk, but I made it through.

That said, my ostomy and stoma are the least of my health issues. My stoma is well behaved and caring for my ostomy and skin is simply part of my daily routine - the same as washing my hair or brushing my teeth.

No one would know that I have an ostomy if I did not otherwise tell them.

I wear a discrete 5" mini-pouch (as I am a petite person, 5"2" and 85 pounds). Most days, I rarely notice that I even have an ostomy pouch on. It is that bother less. I use the Coloplast Mio and CyMed MicroSkin systems. They are awesome.

My other health issues are far the more pressing and distressing than my ostomy and stoma. Honestly, my stoma is cute. There is no "ick" or "gross" factor to my stoma. Having a sense of humor and levity is an added bonus, as with many things in life.

There is a quality of life with an ostomy.
- Karen -
Posted 1/25/2017 2:25 AM (GMT 0)
UPDATE: So the results of the Colon Transit Study showed 154 hours to move through the large bowel, in what should have taken a maximum of 35 hours. The surgeon believes that considering the problems with the pelvic floor, an ileostomy is our best option. My surgery is scheduled February 2nd. Of course I've known it might be coming for a while, but now that it's here, the butterflies are here!

Off hand, I have a couple questions... If the large intestine is left in place (but not used), will I still need colonoscopies? Is it still possible to get colorectal cancer? I know that's a bit morbid, but it's always been on my mind. I am a little obsessed with wondering what happens to all the toxins in my system.

Does anyone have any tips or wise words prior to the big day? I know it's all going to be ok and I'm expecting a learning curve on my way to a new reality.

Thanks for your help, Vicki
Posted 1/25/2017 5:26 AM (GMT 0)
Vicki,

I have Severe Fistulizing Crohns disease. I am 56.
I have a colostomy. They removed part of my sigmoid and left the rest of my sigmoid and rectum in case we can reattach later about 4 to 5 months ago. My GI stated he would still need to scope everything. If he left it in I could still get cancer. Your doctor may advise you differently. I get scoped at least yearly.

Advice: Know that it will hurt when you wake up. Get up and get walking as soon as possible. Pay attention to the stoma nurse and get her direct dial number before you leave the hospital. Start changing your appliances as soon as possible. Ask the hospital if they will give you Hollister M9 drops to place in your pouch. They help tremendously with the smell. ( and the smell while changing my bag was one of the things I struggled with.) Make sure you take the anti smell drops and room spray home with you. (I always ask first just in case) Make sure you have a support group for when you come home.

Prior to surgery Ask your colorectal surgeon for a list of foods you can eat during week1 week2 and week3-then stock your house with it. (I always have marshmellows, creamy peanut butter and crackers for trying to thicken and purple grape juice and coke for thinning my output) Buy a bed protector that protects your bed in case you have an accident. Make sure you have a little table or shelf where you dont have to lean over or reach above for supplies and another for your paperwork.(stoma supply booklets, medical information-this I kept by the bed. The actual stoma supplies went in the bathroom) That you have a mirror you can see your body in (in your bathroom) I bought one that hangs in my bathroom closet and placed a folding chair and 2 old tv dinner trays I painted that I used at first. I also bought a cheap washable rug to protect the floor for when I change my bag. I bought a notebook/calendar to keep track of the food I ate, amount of output and when I changed my bag. That way when I ate something that disagreed with me I could eventually track it down.(and those things changed for me when I got my stoma. My friend didn't have any changes) Know that you will probably be sore for about 6 weeks after surgery and that you can not lift anything during this time frame and you should place a pillow on your incision if you cough or sneeze. (if you have incision) 2 -4 weeks out you will feel as though you will never be without pain, you would pay money for a good nights sleep, and you won't be able to get the bag changing down to a quick time or neat process. All of that started changing for me at week 6, week 8 for my friend. By week 8 I could walk standing straight up without clutching my abdomen.

The stoma nurse should send your name and address in for free samples. They should be mailed directly to you in discreet boxes. Look at their booklets. Call their assigned contact for advice and free samples. Start changing your own bag from day 1. The nurses and home health will eventually leave and you need as much practice and knowledge as possible.

If you have issues call you doctor or stoma nurse asap.

I hope this helps. These are all things I wish I had known from the get go. Instead I was out the first week hobbling around trying to buy things and have them delivered because you should not lift things. (hernia)

Remember...having a bag isn't a big deal. There is a learning curve. You can not tell I have a bag. The only time you can smell me is when I take my bag off or empty it. (if I forgot the M9 drops) And some of my suggestions may be wrong for others. Thats ok. Everyone is different.

Best of luck. Let us know if you have questions.

Clo
Posted 1/25/2017 10:42 PM (GMT 0)
Thanks Clo... you have been a wealth of information and your suggestions are great! You're right, it's so much better knowing these things ahead of time, especially with my anxiety issues. Being better prepared will help when I am on my last nerve. I am supposed to be meeting with the stoma nurse even before my surgery which I thought was a good idea so I won't be surprised or loopy.

How long were you in the hospital? So you only had your ostomy a few months ago?

I'm a little nervous about the lifting, especially for that amount of time. I have a special needs Pug that thinks she's attached to me by Velcro - she's the love of my life. I will have help during the day for a few days. Bella is partially paralyzed and needs help getting on and off the bed and sofa. I thought maybe I could rig up something to support her back end up the ramp, but do you think that's too much lifting? Also, I know I can't do a hard workout for a while, but hope I can handle a stationary bike... did you have a tough time bending? Is that more from the stoma or the incision? -- I'm thinking I have a big incision since they're not touching the large bowel and beyond. I hope to be able to resume sauna relatively soon. I have been given a heads up about being careful about rehydrating.

Oh gosh, the more I write the more and think... and the questions I have. What I'd give to be able to talk to past patients.

Thanks again, Vicki
Posted 1/31/2017 6:21 PM (GMT 0)
Hi Vdahl - I myself am facing your decision at 46 and have just failed my SITZ test. As you have said you have had all the tests - so I am hoping you have had some neurological tests done as well? If it were not for my history I would not have looked into this with such detail but there is an entirely different brain that controls you GI system impacted by all the nerves in that area. If you have Pelvic Floor Disorder and you cannot retrain - and under extensive Neurological testing would be the only way I would concede to this surgery - unless it becomes an emergency situation. The risks are about as high as running around with a colon that could perforate from carrying around so much crap, but more importantly - people that have Colonic Inertia (what we have when we fail the SITZ test and all the markers are not gathered in your poop shoot because you have a problem getting it out) do NOT have a high success rate with this surgery when the Inertia is Secondary to Gastroparesis. I have controlled my Gastroparesis and will control this for some time by being on TPN and I have a 24-hour Zofran infuser that runs through the PICC in my arm. If you are clean and follow the directions - the likelihood of complication or infection is zero - at least with me it has been for 18 months. To me this is normal - I am used to it - and I have no pressure to eat or drink - because it is all in my TPN bag. To me this is a safer route than having that surgery - and also it was the only way that FINALLY all of the doctors figured out I was having tremendous issues with malabsorption (which is your upper and lower GI). So fixing the bottom without fixing the top (per my Butt Doc) doesn't solve the issue - unless it's an emergency or you are a high cancer risk - which I am - but still I am putting this off!

Either way I wish you the best of luck in your journey.

Shelly
Posted 2/1/2017 3:45 AM (GMT 0)
Vicki,

Sorry for the slow response. It is my week for Remicade Chemo and methotrexate. They make it so that I can not think for 1 week and then I get better. My colostomy was due to an obstruction and crohns disease. Please ensure you research your individual health condition. I can only tell you what helped me after my stoma surgery. I was in the hospital off and on (mostly on) for June, July, August and the first 2 weeks of September. We kept hoping my obstruction would clear...or that repeat dilations would keep it open but that did notwork for me. My ostomy surgery occurred on Sept. 8th 20SomeI was released from the hospital one week later.

Regarding Bella...no lifting anything. Hernia alert. Some doctors will tell you 5 pounds... I have a team of doctors and ALL of them told me no lifting for 4 weeks, then they extended it to 8. I had an eight pound cat...could not lift it. Could not lift a gallon of milk. (so have it repackaged or buy the individual serving size)

Exercise...nothing but walking for the first 8 weeks. You may be different. I still havenot been released to use a sauna. Keeping myself hydrated is challenging-and I have a colostomy. Expect to drink something even if you do not feel thirsty. I have a "cup" the hospital gave me that contains 32 ounces. I have to drink two just to not have any issues. Your doctor/nurses will tell you the minimum amount you need to drink.

You will be in my thoughts. Please let me know how you are doing.

Good luck,
Clo
Posted 2/5/2017 8:11 PM (GMT 0)
Vdahl,

Just stopping in to say I hope your surgery went well and I'm praying for a speedy recovery!

I have constipation and had a colostomy done 2 years ago to resolve issues of fecal incontinence as well as pelvic floor dysfunction. My constipation didn't change much w/ surgery, but it's due to severe nerve damage to both my bladder and bowels from Spina Bifida.

As others said, living w/ an ostomy is no big deal for the most part. The first couple of weeks/months are kinda rough, just getting used to it and finding the right pouching system, but after that, it's not so bad. An ostomy will not fix everything, but life is much better than it was.

Good luck to you and hope to hear from you when you are up to it!
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