New ostomate seeking support

For discussing ostomies that are intended to be temporary, and the reversal/takedown of such ostomies.
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Davidov
Posts: 4
Joined: 2021-09-28 10:54:05

New ostomate seeking support

Post by Davidov »

Hello everyone,

I'm glad I found this forum, because I need to connect with people that are going through the same thing as me. I have a good support group that consists of my wife and daughter, as well as some dedicated nurses, and a behavioral health therapist that is helping me cope, but I need direct, first-hand experience.

About me and the events that led me to this forum (This will be lengthy, because I need to vent...):

I am a 44 year old man, living in southeast Alabama with my wife and teenage daughter. I retired from the U.S. Army in October of 2019 after 24 years and 28 days of active duty. I was first diagnosed with diverticulitis in my descending colon on November 25th, 2011, while stationed at Ft. Belvoir, VA. The initial diagnosis came after 2-3 days of pain in my abdomen and finally breaking out in hives. I was hospitalized for 4-5 days and treated with antibiotics. That was the first time the word "colostomy" was uttered to me by a doctor. Over the following 10 years, I had "flair ups" with my diverticulitis and infrequent levels. None ever hospitalized me, and I was able to catch the flair ups soon enough to treat with antibiotics. Then in 2018, while stationed in Afghanistan, I had a bad flair-up that actually landed me on quarters with medics checking up on me, because the pain was pretty bad. I recovered, finished the deployment, and then went home to retire. Had no issues with diverticulitis again until March of this year, when I developed a painful abscess on my colon which almost lead to a perforation, but we caught it in time to treat with antibiotics over a three day hospital stay. It was during this hospitalization, that a younger and very candid attending surgeon broached the topic with me of having an elective surgery to remove the 6-8 inches of diseased colon that has plagued me all these years. He noted that, aside from the diverticulitis, I am an otherwise very healthy man with no other health concerns. At the time, I took no medication, and had no other health concerns. I've always been a very slim man, but I've otherwise always been very healthy. He laid out the benefits of correcting the condition, which only appeared to be getting progressively worse, and noted that recovery would be much simpler (without an ostomy!) if performed on my terms, rather than my sick colon's terms...
He could only perform open surgery at our small, back-woods hospital, so that wasn't an option for me, so I began the search to find a surgeon that I could trust to do this procedure laparoscopically. After several weeks of asking around and conducting my own research on local surgeons in the SE Alabama region, I finally found one I liked, had a great consultation with him, and we set a target date of mid-December to do the procedure, so I could mostly heal over the holidays and minimize disruptions at work. That was back in June.
On September 5th, just after eating breakfast, I was stricken by an intense, piercing pain in my abdomen. Strangely, it wasn't in the area normally associated with my diverticulitis. I thought it would pass or that maybe I had a large bowel movement underway (possibly from the larger and late dinner we had the night before?), but as the morning dragged on, the pain just increased to the point that, by noon, I was doubled over in pain. The drive to the emergency room ER was excruciating. Upon arrival (same hospital where I was treated for the abscess in March) I was eventually (nearly 90 minutes after check in) taken back to a treatment room, where I was given morphine for pain, and then given a CT scan. I never saw a doctor, but the attending nurse reviewed the CT scan results and ruled out a ruptured appendix. Me and my wife asked no less than four times if I had a perforated intestine, to which she said no.
I was discharged and told to schedule a visit with a GI specialist to rule out the possibility of IBS or ciliac disease...no pain meds given and only a mild anti-cramp medication given...and they wanted me to try to give an at-home stool sample if possible, to rule out giardia...

The following day (Labor Day), I woke with discomfort again, which soon became blinding pain when I attempted to have a morning bowel movement. The movement occurred, but soon thereafter, the pain took me to my knees. My wife started to panic and insisted that we go to a better hospital in a nearby, larger city. The 45 minute drive going there was on a major highway, but was so painful...every bump and pothole sent waves of pain through my abdomen.
Upon arrival, I was seen much sooner, given an IV, then an hour later, another CT scan. About 20 minutes later, a young doctor poked into my treatment room where me and my wife soon learned that, I DID have a sizeable perforation in my colon and that I would need surgery immediately.
I panicked. This was a nightmare scenario that I had tried to avoid for 10 years, coming to pass. There was nothing I could do. I begged the surgeon and his team to TRY to avoid the need of a stoma, but of course when I awoke from surgery a few hours later, there it was...a belly with more holes in it than a North Korean submarine and a big old bag stuck to me, with a portion of my guts sticking out into it...(to be clear, I have a temporary colostomy near where the transverse colon becomes the descending colon), which will most likely be reversed in December
My week of recovery was filled with anxiety and got to the point that i demanded to speak with a hospital psychiatrist. I also has extensive pain from urination that required a visit from a urologist. Since surgery, I've also had to deal with a loss of some functionality and sensation in my right arm, that resulted from improper placement of my arm and improper use of restraints and blocks during my surgery.
So now, I find myself at home, going on my third week of recovery. I'm generally pain free and am only taking some prostate medications that are supposed to ease the on-going discomfort I experience when urinating, but am having very real concerns about my future digestive health. My surgery staples will be removed on October 4th, and I really look forward to having those removed. My stoma is doing ok (so far no severe skin issues,no infections, etc.), although it has been a tedious affair for me to get comfortable with it. I change mine every 3-4 days, but that varies, because my output/waste varies in consistency from the consistency of a thick cake batter or paste, to pure liquid...). Despite not having any real dietary restrictions, I have given up all red meat and alcohol, and no subsist on a diet that strives to avoid lots of meat and gassy foods. Despite my efforts to eat as healthy as possible, with plenty of fiber, my guts still feel terrible inside. I feel like things are shifting and struggling inside of me. I can feel my intestines moving waste and it is an unpleasant feeling. I often feel gassy and nauseous and over the preceding four days, experienced some fairly acute pressure right in the middle of my abdomen, but sort of near my stoma, along with very liquid waste.

I don't really enjoy eating any longer, which is a massive departure for me, because I've always been the skinny guy that can eat anything and everything, and never gain a pound. After my initial diagnosis, I did commit to a healthier diet, which included limiting large quantities of meat and eliminating fast food and sodas from my diet entirely). But now, I NEED to gain weight (I'm 6'2" tall and currently weigh 138-140 pounds...I lost 15 pounds since surgery), I can't. Nothing feels right inside my guts and I am terrified that it never will. I've read several posts within this chat forum and most of them are all negative...people dealing with unpredictable bowel habits following their take-down/reversal...people that can't enjoy foods that they used to love...development of food allergies and on-going pain from scar tissue and organ inflammation...

It's all very depressing for me and really weighs heavy on my mind right now. Granted, I acknowledge that my situation could be worse. This should still be temporary for me. My colostomy isn't as debilitating as others. I have friends and family for support. I get it. And yet I don't...fear of the unknown really scares me. I want to be able to enjoy food again and have a normal bowel movement. I want to feel good within my own body and be able to feel confident enough to enjoy sex with my wife again....to not feel like my innermost organs are exposed and vulnerable...I hate this. I hate that this happened right after I committed to finally having the surgery. A lot of joy has been stolen from my life because of this and I haven't really been able to move on past the shock of needing this surgery and change in lifestyle.

Has anyone here had a reversal and then gone on to be happy with their body again? Is there a possibility that I can go back to the way things were, plus a few extra scars? Or is a lifetime of wondering and second-guessing and adapting the norm for us temporary ostomates? I've always held to the belief that once you are opened up and a surgeon starts moving things around and chopping up organs (especially digestive organs), that a person can never be whole again and that life takes a significant departure from the norm at that point. Is this true?

I know this all sounds like the uninformed ramblings of someone who is catastrophizing a fairly benign situation, but I feel like so much control has been taken from me, that I may never recovery it again. I just need to hear from some people that have recovered and generally returned to a normal life. I need to hear something positive for a change, because despite numerous combat deployments and separation from my family, this is hands-down the most difficult challenge of my lifetime. This surgery and the aftermath has shaken my confidence and hope and has been a huge stressor on my little family. I hate feeling like this and living in this low state of mind, because that's not who I am. I'm just having a very difficult time trying to adjust to this new (temporary lifestyle) and am afraid of what other challenges the reversal may pose...

Any feedback or advice is welcomed. Thanks for your time and consideration. Likewise, if anyone here experienced painful urination for several weeks after your surgery or had nerve damage in the arm or hand following the surgery, please contact me. I'm dealing with those too.

"Dave"
Michele H
Posts: 5
Joined: 2021-09-29 19:30:45

Re: New ostomate seeking support

Post by Michele H »

Hi Dave,
I’m sorry that you are going through so much. It’s been 16 years since I had the takedown of my Ileostomy to a J Pouch. Please know that it’s normal to have a noisy gut and to feel things moving around in there after a Coloectomy/Ileostomy. I named my Stoma , Chester and he would embarrass me with the spitting and groaning sounds when I was in public! I think the hardest part of the entire process is the confusion we feel. Your whole life has changed since you went to sleep for the surgery and you have no idea how to deal with it all. I’m glad that this discussion board is available. The only people who can truly understand is the one who has been through it. Right now, I’m sure you are feeling nervous and alone. It’s normal. Believe me, things will calm down and become more familiar. You will soon feel more comfortable with the changes. Right now, your body is trying to adjust to a new way of working too. You mentioned October in your post, is that surgery for the takedown? Are you planning on a J Pouch or ?? Please try to relax and know that it’s a process and we all have to go through it to get to the next part. It’s a lot of changes to go through all at once, I know. I just wanted you to know that you’re not alone and that you’re going to get through this. Life will calm down, yes it will. Lol Take care of yourself. I wish you all the best. Thank you for your service too.
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ot dave
Posts: 2094
Joined: 2010-03-04 19:26:19

Re: New ostomate seeking support

Post by ot dave »

Hey Dave,
Welcome to the boards. Sorry to hear about your struggles.
I can empathize with a lot of what you have expressed here. Unlike you however, I have a permanent colostomy due to colorectal cancer. Reattachment was never an option...
First of all, your feelings of depression are absolutely normal. Most of us had/have some sort of depression linked to our ostomies. Some folks can work it out on their own with time, some need counseling, some need meds, some need a combination of all 3. I was lucky in the fact that I had a supportive wife who let me grieve some on my own time, then had a "come to Jesus" meeting once I was done with chemo. I realized that I still had a lot of life to live (I was a healthy 36 year old at the time of my diagnosis) and kids to help her raise. I didn't need counseling or meds, but would have sought those out had I needed them. This is a huge change in your body and your lifestyle. Depression is absolutely expected and normal. Seek out additional resources if you need them, there is no shame in that!
For me, it took every bit of 8 weeks to recover, and then a slow return to "normal"...at least the new normal. Good news is, is that you do/will heal, and that you can resume living your life. Once healed, I resumed all of the things I had done before. I went back to work (I'm a pediatric occupational therapist where I need to use my body as part of my job), I went back to church and played my saxophone. I got back to hunting/fishing/camping. I got back to coaching little league. I got back to scuba diving and driving across the country to go to the beach every summer. I got back to being intimate with my wife. I even spent a couple of weeks at 10,000 feet hunting elk in Colorado. I guess what I'm trying to say, is that there wasn't anything that I couldn't do with my ostomy that I did without it....
Right now, your GI system is recovering and trying to find its new normal as well. You will burn a lot of calories simply in the healing process. When in chat forums, remember that the majority of folks are looking for answers to their questions too, and that there are a lot of folks that don't have issues who are not involved in these forums. Try to find something positive each day. You should get to feeling just a little better day by day. Try to measure progress a week at a time instead of hour to hour. Remember where you were this time last week or two weeks ago and find the positive changes in those lengths of times. It's hard to see progress day to day. It's like eating an elephant, one bite at a time.
The recovery process is a marathon, not a sprint. Monitor your pace and don't try to sprint to the end....
Hope that helps some.

David
stage III rectal CA 12/08 - colostomy 3/09
"Gatoring since 2010"
Psalms 91:2
Michele H
Posts: 5
Joined: 2021-09-29 19:30:45

Re: New ostomate seeking support

Post by Michele H »

Michele H wrote: 2021-09-30 07:20:59 Hi Dave,
I’m sorry that you are going through so much. It’s been 16 years since I had the takedown of my Ileostomy to a J Pouch. Please know that it’s normal to have a noisy gut and to feel things moving around in there after a Coloectomy/Ileostomy. I named my Stoma , Chester and he would embarrass me with the spitting and groaning sounds when I was in public! I think the hardest part of the entire process is the confusion we feel. Your whole life has changed since you went to sleep for the surgery and you wake up with no idea how to deal with it all. I’m glad that this discussion board is available. The only people who can truly understand is the one who has been through it. Right now, I’m sure you are feeling nervous and alone. I remember feeling like that. Believe me, things will calm down and become more familiar. You will soon feel more comfortable with the changes. Right now, your body is trying to adjust to a new way of working too. You mentioned October in your post, is that surgery for the takedown? Are you planning on a J Pouch or ?? Please try to relax and know that it’s a process and we all have to go through it to get to the next part. It’s a lot of changes to go through all at once, I know. I just wanted you to know that you’re not alone and that you’re going to get through this. Life will calm down, yes it will. Lol Take care of yourself. I wish you all the best. Thank you for your service too.
**almost forgot to mention…I thought about keeping my Ileostomy and not having the J-Pouch surgery bcuz I felt so much better than I had before. After recovering from the Ileostomy surgery, I had zero pain and my energy levels were much better. Now, all these years later, I wish that I had kept my Ileostomy. I have Chronic Pouchitis and it’s really bad. The last few years has been filled with a lot of pain and suffering. I’m probably going back to the bag and I’m ok with that. I have a Dr. visit on the 6th. I will find out more at that time.
scottfloreznm
Posts: 1
Joined: 2021-10-06 19:54:22

Re: New ostomate seeking support

Post by scottfloreznm »

Hey Dave,

45 yo male here. Last September, I went to the emergency room in extreme pain that I thought might be appendicitis because the pain was presenting on my right side. Well after a CT scan it ended up being diverticulitis and I had a microperforation. I was in the hospital for 6 days on antibiotics. I was discharged and met with my surgeon in October to discuss elective surgery. Well my body had other plans. Eating lunch one day in November, 8 started to have very bad abdominal pains. I ended up going back to the emergency room and after 2 CT scans they discovered an abscess had formed which was also causing a fistula between my colon and small intestine. I had emergency surgery the next morning which included removing my sigmoid colon (with a colostomy) and a small bowel resection to remove that portion which was affected by the abscess. I ended up with a wound vac to heal the laparotomy incision. I did have some problems with the initial colostomy appliance the hospital fitted me with until I met with my WOCN and then we found a better one. During this type I had a lot of anxiety and was starting to get depressed. I ended up seeing a counselor and she helped me work through my anxiety realizing that my fight or flight mode was at maximum due to the trauma of the emergency surgery and the loss of control I was feeling. Fast forward to April of this year. I had my reversal surgery and was in the hospital for almost 72 hours. I ended up having another open surgery as I had a parastomal hernia that needed repairing. Today is exactly 6 months since my reversal. I'm doing great - probably the most regular I've ever been in my life. I still get the odd pinch near my surgical scar and where my stoma was. My WOCN told me that I would have those from time to time as the nerves heal. I don't have anxiety like I did after my surgery in November and during the time with my colostomy but from time to time I do have to manage my "what ifs" anxiety especially on stressful days when I get those odd pinches. Hang in there! I'm always happy to share my experiences over this last year.

Scott
mercat72
Posts: 4
Joined: 2021-10-24 14:26:14

Re: New ostomate seeking support

Post by mercat72 »

Dear Dave,

Greetings. I am the caregiver for my husband, H, who had colon cancer and an ileostomy. Yours are not uninformed ramblings, and I'm very glad you got to talk to a psychiatrist. You're going through ostomy hell, and it's hard to imagine what that looks like for anyone who is unfamiliar with it (including oneself and one's family, because--who knew?) We live in a society that doesn't discuss a "bag" or a "pouch" or an "appliance" as one manufacturer calls it). "S---" is an almost acceptable expletive, but we do not talk about stool, or bowel movements, or (yikes!) diarrhea in polite company, not unless we're medical professionals,speaking of which-- I had no idea that WOC nursing even existed as a profession until ostomy was part of my husband's life, but I quickly learned that wound ostomy nurses were my new best friends. All this medical information around ostomies creates a very steep learning curve for us civilians who are new to it.

I want to send you support for going through the whole time consuming, gut-wrenching, and heart rending process--including living in a rural area, as well as changing your diet. H and I live in rural Appalachia. He could have had surgery at our regional hospital, which is 45 minutes away, but they only have general surgeons. H's health history suggested that he should have a colorectal surgeon instead, so we went to Lexington, KY, which is two hours from home. I stayed in a hotel through his miserable 5 week hospitalization (he had about 5 complications, plus a second surgery). It was expensive and inconvenient to be away from home, but it was worth staying so that I could see H everyday, provide support, troubleshoot, and interpret medical speak, like to a doctor who doesn't introduce himself and to whom I have to say, "Would you please tell me your name, remind me what a nephrologist does, why H needs one, and what the heck hyponatremia means?"

H and I have always enjoyed healthy foods, though we do share a weakness for sweets. He lost thirty pound loss from having colon cancer and then the hospitalization. His appearance at discharge scared both of us: he was super skinny. Fortunately, I like to cook. But once he had an ileostomy, it was a whole new ballgame--er, a whole new breakfast, lunch, and dinner. I refused to make two separate suppers for us, so with the help of some cookbooks and advice from the hospiral nutritionist, I developed a couple of very low-fat soups I called "mono-soups" that we both enjoyed. I call them "mono" because they consist mostly of one vegetable. But a person with an ileostomy usually does better with one vegetable at a time than multiple veggies--at least that was true for H. Of course we ate a lot of other things too--carbs like rice and potatoes, poached eggs, baked chicken and fish, and--yes--desserts! Food can definitely be good with an ostomy, but you're right, fried and fast foods are in your past--at least for the time being.

H had stoma reversal surgery last July, a year after he getting the ileostomy. He's still recovering and what he can eat: it's a whole new ball game and the gut is s-l-o-w to recover. There is an ileostomy diet but there is no post-reversal diet,so he and I are challenged once again.

Acceptance is tough, but it is a worthwhile practice. Take care of yourself, and remind your family members to do the same.

Very sincerely,

Mercat

PS: H and I both have therapists and have continued to garner their counsel throughout his illness, so don't be reluctant to reach out. Many practitioners do telehealth now, so finding a practitioner who fits your needs, and who you're comfortable with, is easier in a rural area than it was prior to virtual communication.
Michele H
Posts: 5
Joined: 2021-09-29 19:30:45

Re: New ostomate seeking support

Post by Michele H »

I really hope that Dave checks this forum and sees the lovely responses to his post. I’m praying that he will see it and that he’s feeling much better than before.
Bagged_and_confused
Posts: 1
Joined: 2021-11-01 16:08:28

Re: New ostomate seeking support

Post by Bagged_and_confused »

Hi, Dave. You are not alone in your feelings. I recently went thru "receiving" a temporary ileostomy, a month ago today. Mine came to me as a surprise. A little about my story:

I had been having abdominal pain for about a month that just kept getting worse and I generally didn't feel good. The doctors sent me for an ultrasound because I've had problems with my one remaining ovary and prepared myself to let it go and start menopause at 37. My doc called me September 10th and rushed me in for emergency surgery for what they thought was an ovarian torsion. It wasn't, but long story short, after 3 surgeries at my local VA, in the ICU for 6 days, and I was still having pain and issues increasing, I was life-flighted to the Denver VA. After 2 surgeries, I woke up to unexpectedly find myself having 28 staples up and down my belly and an ileostomy that the WOCNs and I are struggling with fitting. I spent another 2 weeks there far away from my husband and little kids, which was really hard for me as I didn't have kids until after I left the Army.

I lost 30 lbs in my 3 weeks in the hospital. I was put on a walker because my body had gotten so weak. Mentally, I was devastated and still trying to recover in that area. I am a mom, work full-time, help run our family farm, and am a volunteer firefighter. Unexpectedly, getting this bag, getting put on a walker, and waking up from surgery needing a nurse to wipe my behind screwed my head up something terrible.

However, I'm pushing myself to try, to get stronger, to find things I can do while I heal, but really knowing this is temporary, I'm trying to maintain hope. I hope that after the reversal/takedown, my new normal will be close to my good old normal. There really isn't much else we can do but hope and fight. We can't give up, especially before we even get on the ride. We have too much to get done in this lifetime and too much love and knowledge to share.

Hang in there brother!
Michele H
Posts: 5
Joined: 2021-09-29 19:30:45

Re: New ostomate seeking support

Post by Michele H »

To Ragged and Confused,
I can honestly say that I know how you are feeling. Waking up with an Ileostomy and Nephrostomy after being in a coma for weeks was shocking and I couldn’t understand why and how it happened. My story is long and I’m not sure if it matters what caused it or if sharing my experience with the outcome will help others understand that there are many of us out there. At first, I thought that I was the only person who had an Ostomy! Little did I know that some of my Coworkers had one also! I hope you have a good Ostomy Nurse who is helping you get adjusted to living with an Ostomy. I found great people to talk with at the place I bought my Ostomy supplies. Any chance to talk about what you are going through helps a lot. My advice is to be kind to your body and work on getting your strength back. Educate yourself on living with a Pouch for when you have the reversal, if you do. I wish you all the best. Time does help with healing. Your gut has gone through a lot of trauma and it takes time for it to heal.
hsiegal
Posts: 2
Joined: 2021-12-04 16:18:33

Barrier rings and Paste

Post by hsiegal »

Has anyone with an ostomy had any success NOT using barrier rings and/or paste.
Michele H
Posts: 5
Joined: 2021-09-29 19:30:45

Re: New ostomate seeking support

Post by Michele H »

I wish I could say yes, but I would be fibbing…
Have you heard that it can be done?
User avatar
ot dave
Posts: 2094
Joined: 2010-03-04 19:26:19

Re: Barrier rings and Paste

Post by ot dave »

hsiegal wrote: 2021-12-04 16:35:10 Has anyone with an ostomy had any success NOT using barrier rings and/or paste.
Yes, I have. Before my hernia repair, the skin around my stoma was nice and flat, and free of divots. That's where I adopted the less is more philosophy to flange placement. However, with dips or divots, it becomes much more difficult as the flanges, while mobile, have limitations as to how much they can do on a constantly moving torso.
After my hernia repair, I was left with a dip between 7 and 10 o'clock around my stoma, so I use half of a barrier ring to fill it in at each change. I never use paste. In my experience, paste was just a mess waiting to happen. It has no adhesive properties and eventually becomes useless. The barrier rings have provided me with far more protection than the paste ever did. Over my years here on the discussion boards, I have only read a handful of times where the paste was useful. Most use the mantra that paste is a waste! But, if it works for you, then great, keep doing it.... If you're having issues, I would get rid of the paste first and try something different. Ostomy care and maintenance is frequently an experiment. Keep working to find out what works best for you. Hope that helps some.

David
stage III rectal CA 12/08 - colostomy 3/09
"Gatoring since 2010"
Psalms 91:2
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