It’s something I’ve wanted and needed done for years, but heath issues, insurance issues, etc got in the way. I’m finally healthy enough to have it done, and my insurance is in place at the same time.
I had an ileostomy almost 2 years ago, and in October, I’ll have the remainder of my rectum removed, along with some amount of associated internal tissue, and get sewn up. A ‘Ken-butt’ surgery. It’s a problematic area for me, causing pain, discomfort, oozing blood. . .It’s my hope that it goes well and it improves my quality of life.
It’s an operation that sometimes has associated problems - impotence, urinary incontinence, healing issues, etc. I’m a bit apprehensive, but I’m willing to roll the dice with those things. What concerns me is my hospital stay, and what will probably be 2 to 4 weeks in a rehab facility, AKA- a nursing home.
I’ve done all I could these past several months to avoid contact with people, and with COVID-19 surging once again, I’m gonna be locking myself up in one of the worst places I can think of. I could theoretically put off the operation, but how long will COVID be a problem? And when the virus danger’s mostly past, will I still be healthy enough for the surgery, or will new problems develop to delay it or make it impossible, as has happened in the past?
It’s been on my mind in recent days. I’m going to go forward with the surgery, but I know that it might not go smoothly, and in addition, I risk catching the virus while I recover. I’m not loving the circumstances, but I have to take the opportunity to improve my situation when it appears.
I should have mentioned in the OP: I want this surgery because I’ve had Crohn’s disease for going on two decades. My rectum bleeds, oozes, hurts and cramps. After the surgery, I’ll go to the bathroom in an ostomy bag, just as I do now. I had an ileostomy two years ago.
This operation is just to get rid of useless, diseased tissue that continues to cause me pain and problems on a daily basis.
Why didn’t they just do the full thing when you had the previous procedure? Seems sort of odd to leave you sort of intact [unless they were hoping that giving the problem area a rest from digestion could repair it?]
I am looking at the possibility of a ‘ken butt’ myself, the cancer came back and we are now determining the plan of treatment. Previously I had joked with my husband about our impending move to Nevada that he better watch out because if aliens grab us, they will have to butt probe him twice because I wouldn’t have a butt to probe =)
I’m so sorry to hear about your cancer recurring. Do you have an ostomy yet, or would you be getting that at the same time as the “Ken Butt” surgery? From your question, I assume your plan is to have it done all at once.
The reason why I didn’t have it done at the same time is that I was in poor health. My Crohn’s was in a full flare, and had been for awhile, and my surgeon was afraid I wouldn’t tolerate both at once. Also, the Crohn’s was messing up my rectal area at the time, so he wanted me to take a new biologic for awhile to see if it would help my rectum. It has, so the surgery SHOULD be less extensive and problematic now.
A word of encouragement about the ostomy surgery: I got used to it really fast. It’s just a part of life now, and I appreciate not being sick and passing blood all the time. The doctor talked to me briefly, asked me if I was interested in getting a ‘j-pouch’, which would allow me to hold stool and pass it normally again, but I didn’t want it. It’s too much of an ordeal to go through, and in my case, the rectum was a problem area all along, so I went another direction. I decided to eliminate the rectum, and all possibility of reversing my ostomy.
Good luck to you both.
It seems extreme but us folks with chronic diseases know all to well the ‘all-in’ approach to health care.
Sometimes decisive actions are needed. I didn’t want to have my kidney removed. I wanted it to magically heal. It didn’t.
I had it out and I feel so so much better this year. I can’t believe I went so long feeling that horrible. I’m stronger everyday.
The COVID thing in your re-hab place is especially scary. Take lots of sanitizer and find your own masks. They may be short supplied. Just as a extra precaution.
Again good luck.
I worked with a girl briefly that had Crohn’s Disease and she told me about having the J-Pouch procedure done, I’m guessing she didn’t have trouble to the extent you did if that was an option for her.
She mentioned she lost a lot of weight cause she didn’t want to eat but never mentioned rectal problems, but of course maybe she just didn’t want to go into that deep detail.
Have you read much about fecal transplants, do some people get real results from that or is that mostly less severe cases?
Beckdawrek:
Glad to hear you’re feeling better. You had a kidney removed, not transplanted, and you feel better from just that? Must have been a pretty diseased piece of tissue. I was sick for about 17 years, and I started feeling better before the ostomy surgery was healed. That diseased tissue that my body was attacking was gone, and the racking pain of digesting food was gone with it. I wish I could have done it sooner, but before the Affordable Care Act, I couldn’t get insurance. All those years without proper healthcare left me permanently damaged, even beyond the ostomy.
What was the name of your pain, if I may ask? I don’t know much about kidney diseases, just a little about polycystic.
I need to figure out the mask situation before my operation. I wonder if those accordion-folded fabric masks are good enough, or if I need to invest in those n95 cups-for-your-face. I know those cheaper masks fog up my glasses no matter how much I adjust the nosepiece.
Pool:
Crohn’s disease is an autoimmune disorder that can affect you anywhere along the digestive tract - from mouth to anus. I was affected in my colon and anus, with many fistulas and abscesses. Mine got out of hand more than some, in part, because I didn’t have health insurance for 14 years.
WRT fecal transplants, I think we have a whole microscopic world to learn about. We’re just learning about the role bacteria play in our health, and I would not be surprised if they can help many Crohn’s patients. I kind of think Crohn’s is more a broad category of symptoms than a single disease, and in time we may discover different causes for different expressions of Crohn’s.
Fecal transplants can be a real life-saver, even though we don’t quite know what we’re doing yet, which bacteria are helping. I think it’s a great treatment for stubborn C.Diff infections, and I would have tried it for my Crohn’s if I could have, a decade ago. By the time they did the ostomy though, my colon was so disease-scarred as to be nearly immobile, and they’d already operated a half-dozen times and scarred me up otherwise.
They’ve collected fecal samples from remote tribes, trying to get a sense of what our more natural biome is like, vs what it’s become with our cleanliness and altered diet. This may help them figure out what we’re lacking, and what we’re being overrun with. This is an important area of research.
I’m a T1 diabetic from birth. My kidney was irrepairably damaged and infected. We tried everything. In March when I had the surgery I had been ill for about 18 months.
My diabetes just wouldn’t stay under control. I had always had it under control and it was very scary to not know what was gonna happen day by day.
The kidney gone and my diabetes has settled down and I feel nearly as good as I did 2 or 3 years ago.
Of course I’m in the vulnerable category for any virus’ or flu’s. So I’m locked down at home for the duration.
I do not want to take a chance and get COVID.
Damn, type 1 can be rough, glad you’re doing better. COVID’s got me worried too. I’ve pretty much been social distancing since I got home from the hospital two years ago, at least now, I have a reason
It scares me. Another reason to worry about this procedure. Probably the worst place I could be is in a nursing home, and I’ll have to be there for weeks. Gah.
I was in a nursing home for most of 2018. I wouldn’t them to find their ass with both hands and a flashlight. Bad time. They made it worse - I’m one of those ppl who REALLY can’t have gluten, it’s not a trendy diet to me. It sets off my Crohn’s horribly, making me flare and bleed. THEY KEPT GIVING IT TO ME! I talked to the nutritionist. I talked to the kitchen manager. Hell, I had his cell phone #. They were utterly unable to NOT give me food with gluten. Once, they told me they ordered special gluten-free noodles. THEY WERE REGULAR EGG NOODLES! Wheat was the first ingredient, and said it contained gluten, but they bought it special for me, and told me I could eat it!
Sorry, I get mad thinking about what they put me through. It hurt me bad, for months and months, and it was their fault.
No, I don’t have one yet. The location of this occurrence is problematic, it is right at the edge of the anal ring - there are 3 options, chemo and monitor, chemo, remove to clean margins and hope for no permanent damage and monitor, or chemo, full ken butt and monitor. Obviously the first 2 are my preference, however I am researching everything I can about life with an ostomy.
Crohn’s sucks, I am glad I don’t have it. I am glad the new biologic is helping, and your ostomy is doing so well =) Good luck in avoiding aliens =)
Yeah, for years, they thought I had ulcerative colitis. I thought, “Well, at least I don’t have Crohn’s, those poor ppl get weird things like fistulas.” Heh.
Well, if worse comes to worst, you should know that living with an ostomy isn’t the end of the world. I hope it doesn’t come to that. The idea might have been easier for me to accept than some, as I’d built up a great hatred of my bowel and wanted to rip it out myself. Also, if they have to cut the anal sphincter(s), continence could become problematic. Yeah. . .I had some experience there. Life as an adult that constantly poops themselves is much worse than life with a bag, I’ve found.
Like many of the heathens here, I don’t pray, but I do hope you get well soon and come out of this in the best possible shape.
Now I’m picturing a Far Side cartoon:
“Remulon, there’s something wrong with my Human. . .”
“C’mon Glorthos, I’ve told you a thousand times, you put the probe. . .oh! Oh, those humans and their wacky cosmetic surgery!”
I’m really moved by this thread, y’all some strong ass bad asses
I hope FILB your next rehab nursing stay is on the ball with your therapeutic diet, get someone to read them the riot act, you’re the patient you have people!
Been doing a fair amount of research - it will put a crimp in our favorite form of vacation - cruise ships. We pop for the full access spa deal to get the hot tub/sauna access, and we like hitting the various beaches [bahamas, wow!] and ship and various island public policies are a firm nope with an ostomy. sigh The diet is wigging me out in an amusement way - diabetes diet = whole meal, seeds, nuts, grains, lots of veggie fiber; ostomy diet - refined flour, lower fiber, minimal seeds, nuts and anything that can pass in granules/chunks … oddly, I hold my hospitals record for throughput - as verified by visual watermelon bits, 17 minutes mouth to toilet bowl when I had chemo/radiation based holy crap boss level diarrhea
Pretty much - poor mrAru would have to bet probed twice =)
I know, the whole diet in institutional care sucks, he has gluten allergy, I am allergic to mushrooms [common as powdered form in ‘natural flavoring’], coconut/palm/tropical oils, sugars and solids [cheap shortening, sweetening, nongluten flour] and shellfish [bivalves, clams mussels, oysters, scallops - common in oriental fish sauce, or even european cooking as clam juice for making something seafoodier] so I have to pretty much avoid convenience foods and mixes, and those are rampant in hospital - I ended up having pasta in vegan tomato sauce with what was surprisingly good real shredded parmesan rather than Kraft shaky cheese pretty much every dinner, lunches tended to be the turkey, ham or roast beast sandwiches and a garden salad for lunches, breakfasts were able to be my normal oatmeal. mrAru was working nights, and got off to share breakfast with me - he would bring in a banana/chocolate malted Carnation instant breakfast/whole milk yogurt [homemade] shake at about 9 am so that handled my midmorning snack, and he would smuggle in cut veggies and those single portion cups of hummus for my afternoon snack.
I decided to be proactive this time, I set up a hospital go-bag, it has my own slipper socks [toe scks with nonskid bottoms] a bathrobe to avoid the air conditioned ass, some single use shampoo, conditioner, body soap pods, those little pre-gooped toothbrushes, floss thingies, nasal saline [sealed], lip balm [sealed] and body/hand lotion. I also have about 20 each salt and pepper packets, honey sticks, tru-lemon packets, decaf earl grey [bigelows!] packets of splenda, individual tubes of peanut butter, jelly [they always have saltine crackers available at the nurses station] and the little bottle of srirac
