Desperate for support

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Biggmhunter
Posts: 2
Joined: 2018-06-26 21:56:43

Desperate for support

Post by Biggmhunter »

I recently had my entire colon, rectum, anus removed. Additionally, I had to have a bladder sling, prostate mesh support, and seminole vesticle repaired.
I'm now left with and ever growing pain, urinary issues, erectile dysfunction, and nerve damage. I dont know who to talk to. I'm 36 yo Male, married, two kids. While I feel this ridiculous type of crohns I have is gone, the after math seems worse.
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steiconi
Posts: 1114
Joined: 2015-05-18 03:12:03

Re: Desperate for support

Post by steiconi »

Yikes, that's a big load to deal with all at once. It must be really overwhelming.

I'd start with the surgical team, figure out what is causing the pain, and get that under control.

Talk to your spouse and family and friends and ask them for support. They can't take away your pain, but they could walk the dog or take the kids to school so you have one less thing to worry about.

Take some time to feel sorry for yourself. That's a reasonable, sane reaction to what you're going through, and trying to deny it makes it harder. Throw yourself a little pity party, moan about how unfair it all is. Get it out of your system so you can work on what needs doing. Repeat as needed.
Lee

I am not my disease.
Button
Posts: 3616
Joined: 2017-10-10 22:14:15

Re: Desperate for support

Post by Button »

Bigmmhunter:
I felt absolutely unmoored and adrift for several months after my intestinal perforation and surgery. The physical recovery seemed more straightforward than the psychological/emotional recovery that laid before me.

The pelvis is a small space, about that size of a fine china tea-cup. Major nerve and vascular bundles pass through the narrow confines of the pelvis leading down to innervate the legs. Surgical trauma/handling/construction can cause transient bladder and erection dysfunction. The majority of issues will dissipate with time. However, nerve recovery can be slow and protracted - a period of several weeks to months. The urogential area is richly innervated with sensory nerve endings, which can be a source of lingering post-operative pain, especially if nerve endings become embedded in scar tissue. Gentle stretching and tissue mobilization/gentle scar massage can be helpful in dampening nerve pain. Purchasing a memory foam seating cushion with a rear/sacral/tail bone cut-out was one of the best gifts that I was given while recuperating. The tailbone cut out unweighted the healing anal wounds while providing equal weight distribution (you want to avoid separation of the two buttock cheeks).

Owning a new ostomy and the inherent unpredictability of a spewing ileostomy is not something that can be readily discussed and shared with family/friends in trying to find support, empathy, and understanding. That’s where this ostomy forum is uniquely valuable. You are among friends here. People who share a common thread of having an ostomy or caring for someone with an ostomy. We “get it” - poop and more poop, ostomy pouches, skin integrity, the raw embarrassment when an ostomy wafer leaks, et.al. The forum is open 24/7. Do not hesitate to reach out, as you have done with your first post, to connect with others here. This forum really is an amazing group of people. People helping people.

I have been sharing space on my abdomen with a stoma now for about 7 years. The first several months were discombobulating and frustrating. My ileostomy seemed to flow like a garden hose. It took a lot of time and attention to tend to. Now, my ileostomy is no big deal. It is quiet and well-behaved. And it seems as natural to me as wearing my bifocals/eyeglasses. What was once difficult is no longer as challenging.

I hope you find understanding and support here to ease the discovery process of having an ostomy. And I send you good karma and healing energy in your continued recovery.
- Karen -
Intestine perforation, sepsis, ileostomy, 2012
Addison’s disease + endocrine failure
Palliative Care
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ot dave
Posts: 2119
Joined: 2010-03-04 19:26:19

Re: Desperate for support

Post by ot dave »

Biggm,

When I was diagnosed with rectal cancer, I was married, had 2 kids, and was also 36. I kind of have an idea of where you are coming from. I haven't gone through what you have gone through, but I understand and empathize with your situation. I don't know how long ago your surgery was, but just keep in mind that it is a marathon, not a sprint. Healing takes time...more than we want it to, but it should get a little better each day.
One thing to keep in mind, is that most of us ostomates dealt with some form of depression after our surgeries. Not only is it common, it's expected (at least that's what a psychologist colleague of mine told me). I did well after the surgery as I went directly into chemo. But, once the chemo was over, and I was done battling cancer, I was left with this contraption on my stomach. I had some anxiety and depression that lasted about a month and was alleviated with a "come to Jesus" meeting with my wife who reminded me that I still had a life and kids to help her raise...and a family that loved and missed me.
We all handle it differently. Some of us need time, others need meds, some need counseling, some need a combination of all 3, and some need a "come to Jesus" meeting! Don't let it linger. If you need some help, get it. There is no shame in asking. The time wasted is not worth it. Hope that helps some. We are here to help you through the process. Hope that helps.

David
stage III rectal CA 12/08 - colostomy 3/09
"Gatoring since 2010"
Psalms 91:2
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oliveoyl
Posts: 664
Joined: 2013-01-23 12:39:45

Re: Desperate for support

Post by oliveoyl »

Hi Biggmhunter,
You've gone through an enormous, life-changing surgery. It's going to take a long time to get back to feeling normal. I didn't feel like I was going to make it until about 9 months after my surgery. It's very normal to feel depressed, discouraged, and like you can't possibly make it through this.

But it will get better. You've got to let the time go by, slowly and steadily. Every day you will heal a little more. Your body will adjust, and it will come to terms with the ostomy. You will learn, slowly and surely, about all of the things you need to do to live with your ostomy successfully.

There may be setbacks, and more hospital stays. I was hospitalized 6 times for ostomy related issues, but the stays got shorter and less and less. You can do this. It's very hard, there's no getting around that, but you can do it. Be very patient with yourself, and go slowly and carefully. There is a light at the end of the tunnel. You will adjust, your body will adjust. Don't try to force your recovery. It will take exactly as long as it takes for you, not the "six weeks" that doctors seem to tell their ostomy patients.

Come to this board and use the search bar. Ileostomates are in danger of dehydration, so read about that, and, as you recover think about using an ostomy support belt, as ostomates are very prone to developing a hernia. I wear a Nu-Hope support belt, and take it off only to shower. These are things to think about.
Olive
Crohn's. 2 stomas. Permanent ileostomy, mucous fistula
"I yam what I yam." Popeye
Mikel61
Posts: 2
Joined: 2018-10-26 14:30:30

Re: Desperate for support

Post by Mikel61 »

hi

for the most part I have had the same surgery as you did with the rectum still in place. first off your E.D. is due to them working n the area of you rectum, this is where the nerves run for you reproductive organs. The best thing I can tell you is to look into penis implant, and when you do always get the highest level item they have which I think is a pump up implant. You will have pain with this and your diet may have to change depending on weather you had a colectomy or an illy. If you had an Illy don't you need to up your fluid intake and your colon did that and now that its missing you need to take in extra fluids. as for foods I would test foods that hard to digest and could cause a blockage. I hope this info helps
lp1964
Posts: 170
Joined: 2013-11-19 13:33:00

Re: Desperate for support

Post by lp1964 »

Dear Friend,

I had similar surgery although not that extensive. Hopefully everything will style down for you jus as did for me.

Theses things take time to heal. You will find a lot of knowledge and support here for you intestinal issues. Later you can start dealing with the ED on franktalk.org

I was left with permanent ED and have been using injections with great success for two years now.
You are welcome to email me as well if needed more advise.

All the best!
Colostomy After Stage 3 Rectal Cancer Surgery
"Grace + Attitude = Gratitude"
Akenrat
Posts: 3
Joined: 2018-10-28 20:34:26

Re: Desperate for support

Post by Akenrat »

Hello,
My name isTarneka and I am an extremely new Ostomy about 5 weeks out of surgery. I am really struggling with the fact that my Stoma is for the rest of my life and I am 45 yo. I have been really ill with GI issues up until my body stopped releasing waste due to a pelvic floor that simply does not work anymore. At first I looked at it as the death of my dance career, please somebody anybody who has a Stoma who is athletic or very active tell me how I can dance again and know how to do that with confidence without fear of my Stoma destroying that for me. I am looking for information on techniques, style bags etc to be able to have successful performances. Also, I am having issues with my Stoma shrinking, will it shrink smaller than the quarter size that it currently is?
lp1964
Posts: 170
Joined: 2013-11-19 13:33:00

Re: Desperate for support

Post by lp1964 »

Dear Tarneka,

Sorry to hear about your concerns. I a dentist and living with colostomy for 5 years now. The way it started I couldn’t imagine working with my stoma next to my patient’ ear and I had some embarrassing events when passing gas or output.

So I decided to induce diarrhea once a week wit Milk of Magnesia and only wear a 3 inch stoma cap for at least 5-6 days. This way I have complete freedom in my professional and privste life.

If you consider this technique definitely consult your physician and email me for details.

I also suggest you to open up a new topic so people here can give you more personalized advise.
All the best!
Colostomy After Stage 3 Rectal Cancer Surgery
"Grace + Attitude = Gratitude"
MtnMama
Posts: 135
Joined: 2009-01-11 20:10:52

Re: Desperate for support

Post by MtnMama »

I hope Bigmmhunter got a chance to read all those wonderful responses. Steiconi, Button, OT Dave, Olivoyl, Mikel61, and lp1964: You inspire us all with your words of compassion and wisdom. Thank you.

Good luck Bigmmhunter and Akenrat. This really is a great forum with amazing people and sound advice.
2nd time Ileo '08, IBD since '93, still lovin' life
Dog lover 23320
Posts: 23
Joined: 2019-01-28 19:41:04

Re: Desperate for support

Post by Dog lover 23320 »

I was recently diagnosed with early stage rectal cancer. I did chemo and radiation for 6 weeks, Surgery is next week to remove the cancer. I just turned 41. My family and boyfriend are amazingly supportive, up until now I was very active but I have been depressed and overwhelmed with the care of taking care of the colostomy. My surgeon said it would be temporarily for 8 weeks. The Nurse called me tonight to schedule the ostomy marking and I was upset when I got off the phone. She told me about this website so I joined. I had 27 radiation treatments to my pelvis (that was hell)

1 N Jen
Jenifer, 40.
Dx: stage 2 rectal cancer, LAR, rediagnosed stage 1,Temp Ileostomy
Button
Posts: 3616
Joined: 2017-10-10 22:14:15

Re: Desperate for support

Post by Button »

Dog lover:
What a great on-line name of “dog lover.” Can I presume that you are fond of dogs? I adore dogs. I had a little tea-cup Maltese, Molly, who passed away last year who I will always miss deeply.

Your ostomy nurse did you a favor by directing you here. We will help you through your ostomy with support and guidance - as well as a healthy dose of humor and friendship.

You may want to clarify with your surgeon as to the type of procedure you will undergo. A lower anterior resection (LAR) will involve a temporary loop ileostomy, generally placed on the right side of the body. An anterior perineal resection (APR) will involve a permanent colostomy, generally placed on the left side of the body. There are differences between the two types of ostomies, so it would be beneficial to clarify which procedure your surgeon is planning.

We have several members here who are rectal cancer survivors.

Another valuable resource for you would be The Colon Club. It is an on-Line forum for individuals under the age of 50 with colon-rectal cancer and their caregivers. Its an awesome group.

www.colonclub.com

Between this forum and The Colon Club I think you will find a whole new level of support and understanding available to you.
Karen
Intestine perforation, sepsis, ileostomy, 2012
Addison’s disease + endocrine failure
Palliative Care
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Bob Webtech
Site Admin
Posts: 995
Joined: 2005-09-29 11:17:09

Re: Desperate for support

Post by Bob Webtech »

Hi Dog lover,

I replied to you on our Temporary ostomy forum, but it was suggested I also post here so more people would see it. As it happens, Button and I were both skeptical about the claim you would get a temporary colostomy in connection with your colorectal cancer surgery. In that connection, I wrote in the Temporary forum:
You may wish to check whether you'll really be getting a "colostomy." In fact, the temporary ostomies created in conjunction with colorectal cancer surgeries are more often ileostomies rather than colostomies. It also turns out that the name "colostomy" gets overused so, in many cases, ileostomies are referred to incorrectly as colostomies. I suggest looking over a page describing the various ostomy types at https://www.ostomyok.org/whatis.shtml on the site I do for my local support group. And note the "Terminology Confusion" section at the bottom of the page. Then, you may wish to check with your surgeon to confirm exactly which kind of ostomy you'll be getting.
Bob Baumel, UOAA discussion board administrator
nickolas
Posts: 119
Joined: 2018-11-13 12:13:13

Re: Desperate for support

Post by nickolas »

Hi Dog Lover, I hope your surgery went well. I am a 15 yrs rectal cancer survivor who has a permanent colostomy. Best decision I ever made. Yes there is a learning curve in the beginning, but in time, it's a normal part of your day like brushing your teeth.

This is all new to you and overwhelming I'm sure, but give yourself time. Because in time your life will be normal again, maybe a new normal, but normal again.

Be kind to your self and as Karen stated, join the Colon Club if you have not already done so. Between the 2 forum, you are not alone. We have walked in your shoes and know what you are going through.

Nickolas
rectal cancer 2004
stage IIIC
permanent colostomy
NED 15yrs and counting
Nomadic
Posts: 20
Joined: 2018-10-26 18:16:43

Re: Desperate for support

Post by Nomadic »

Hi Akenrat/Tarneka,
My condition meant I could no longer participate in strenuous exercise, running, jumping so I got a referral to Physical Therapy to design a strength training program that was safe for me as an ostomate and deal with some of my comorbidities. I suggest you get a good abdominal binder and see if you can find a PT or sports medicine professional to consult with. I've found ostomy binders on Amazon and Walmart.com
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