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Living With an Unusable Colon?
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- เผยแพร่เมื่อ 18 ส.ค. 2024
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It's not TMI, it's real life and relatable. I appreciate your candor.
Thank you for your honesty and openness. I'm new to your channel, and I like it already. For some reason I landed here after looking up videos helping me with my "Irritable Bowel Syndrome" (which I call "Angry Bowel Syndrome because "irritable" is a clear understatement). Yes, I know that IBS is a much much much much much milder thing than IBD, but it's still quite brutal at times.
Girl, I work in a hospital and have learned so much from you! Your awesome,keep on with your videos. ❤️😘your very cool 😎 beautiful soak never be embarrassed to speak about what’s happening with your health ❤️ love you ❤️Thanks for sharing 😘
Thank you!
Thanks for your honesty, persistence and courage. My daughter has lived this. Trying to learn so I can be supported. Your videos are helpful and informative. These videos do much for families like ours. Glad you're living your life!
thank you! I have been waiting so long to hear another ostomate talk about still having to go to the bathroom and mucus and vomiting that comes with blockages when the ostomy stops working. it is normal.
You are such a tough Pretty Woman! I deal with IBS and sometimes I find the pain unbearable! Watching your vids makes me think “I can handle this” what you go through is so much tougher.
i was flaring so much in my rectum after having my large intestine removed i had to have the rest removed and my tush totally closed up. ( We call it Barbie butt) i cant imagine life without my bag now!! proud bag lady!!!
JessieMac I am meeting with my surgeon Friday to talk about Barbie butt surgery; any chance you would talk offline with me? I'm at dvhm@yahoo.com and my name is Diane. Thanks!
I will most likely need a proctocolectomy as well... I heard the post op recovery was rather painful. Could you share your experience?
Clank
Thank u for such a detailed reply! I'm thrilled ur healing went well as that u are able to do the things that your illness prevented u from doing! The name of the surgery u mentioned is what I'd need (I think I wrote the wrong one). For me, I have a genetic connective tissue disorder that has caused prolapses, nerve damage, chronic gi issues (severe ibs, inflammation, gastroparesis, infections, dysbiosis, gerd, colonic inertia and severe constipation due to nerve damage, pudendal nerve damage, etc). My colon/rectum basically don't function, which have caused a burden on my entire body, let alone my quality of life. So, it's a bit different from ibd, but similar in many aspects (it's suspected I have some form of ibd, but tests have been inconclusive and my whole case is a puzzle to doctors).
Have u noticed any issues from the surgery? Or changes? My concern, which I can't find the answer to, is what happens concerning gut flora, b12, hormones (specifically hunger/appetite ones), and neurotransmitters once the colon is removed? These are basically solely tied to the colon and have multiple functions with health. I appreciate u mentioning mood, which ties into these aspects. Also, have u found that removal of the colon has affected appetite or weight (ie, made it harder to lose or gain, changed your appetite, etc)?
I truly appreciate the info and am glad u are doing so much better!
Clank
Oh, and yes, I am vegan.... U bring up a good point about protein and it's definitely something to consider. Being vegan is important to me, so I'm hoping the surgery will enable me to eat a wider variety of plant based foods. I haven't done too well digestion animal products in the past besides farm raised eggs (which, if it comes down to that, I would consider consuming again, if absolutely necessary), but I also can't digest legumes or most plant based protein sources either. I'm hoping that the surgery will enable me to have a better chance at digesting plant based protein (as even leafy greens are troublesome and sometimes cause blockages and other discomfort). How has your ability to digest and your dietary choices changed since your surgery?
ReineDeLaSeine14
Yep, I do! It went undiagnosed until recently (I'm 31) but have had gut issues (and other complicated health conditions) my whole life. I'm so sorry about your condition.... Your gastroparesis sounds really intense 😔. I have poor mobility as well, and the main issues (in which eds certainly plays a role) requiring an ileostomy are from multiple organ prolapses (repair surgery won't work due to the eds), chronic constipation since childhood which got progressively worse, nerve damage, infections, longterm malabsorption, ulcers, gerd, and inflammation.
Do you have a good medical team that u feel are properly addressing your situation? Howing have u been on TPN?
I had stage 3c Colorectal cancer, after 8 months they removed it. Now a year later they can't do a colonoscopy so Lucky me, I get the bag back. All I look forward too is not looking for a restroom every few hours
I got diagnosed with Crohn’s first and UC later just like you
Funny that we have a similar story as well!
I am so glad I had my j-pouch removed and sewn up... Best thing I ever did besides getting a permanent Ileostomy. JessieMac, Barbie butt here...😊😊😊
I have Crohn’s disease n I had half my colon removed, half my large intestine & I only have 5ft left of small intestine. I am in constant pain everyday of my life. Sometimes I have better days then most but yea it gets rough. Luckily before it got to bad I had my son he is 8yrs old & he’s my heart n soul.
I'm in the hospital right now. I've been living with ulcerative colitis for almost 5 years, and I just had my colon removed 3 days ago, and my body is really sore at the moment, and I'm just getting used to having an ostomy. Unfortunately, I had a rough night last night because my ostomy bags kept leaking and the nurses kept having to replace them. My ostomy site is really, really raw.
Lisa Hathaway I've been suffering for 5 years with uc as well. I'm heading to see my surgeon March 23 to book a date for an ostomy surgery. I'm pretty nervous about the surgery but want my life back. Good luck to you I hope everything heals well and your feeling better soon.
Joanne, I will keep you in my thoughts and prayers, and send you lots of healing energy. 🙂
you poor thing I feel for you good luck with the future of your health
Brandee Brazda she's definitely not poor :) She embraces her health problems like a hero! I envy her strength and good spirits. I wish I had such strong personality :)
I would definitely still think Crohn's for you since you have stricturing disease which isn't at all common in UC. Maybe Crohn's colitis since it's primarily affected just your colon.
One year ago, I married the most wonderful man. In October of 2016, I had an emergency bowel perforation and almost died. Unfortunately, I "lived" and now have a colostomy. I was a gross, ugly, stupid, bitch that most people hated before the colostomy. Now, I don't even look human. I hate myself so much and I'm doing my best to push my husband away. You are an amazingly positive person. I hate my stoma and I hate my life. My husband doesn't understand why I want to die. It's amazing how bad life can get. Sometimes, I think I did die and now I'm in Hell. I don't want to lose my husband but I'm emotionally "killing him."
Are you currently in therapy? Something incredibly life changing can make existing depression and self loathing monumentally worse. It took a very long time, but I'm now in a place where I'm not suicidal and not actively hurting myself. I felt a lot better after I was able to change the type and size of my feeding tube but still struggle with how my diseases have affected my body shape, especially my abdomen. I have a central line too but I was fully ready for that. 💜
There are lots worst things than a stoma... look at the possibility of life not the small stuff... most all of it is small stuff. Your husband loves you not your ability to go to the bathroom.
Seven years ago, diagnosed with Ulcerative Colitis, treated with those little Rx Enemas off & on for a year. The third Year wound up in Emergency walk-in at my Doctors office, they didn't even make me wait( I worked for the Hospital &Clinic, so Everyone knew me), I was the color of Oatmeal (I'd been getting sicker for some time) They had my blood in the Lab before Doc looked at me, He asked my Richard a couple of Questions while just watching me as I was getting worse. He had me in an ambulance On my way to Hospital... Not much I remember, mini seizures,.. was reported by GI Dr.that never even looked at me that I had Crohn's, & scheduled a Surgery. Luckily my Man called my Daughter & She immediately caught a flight & took over since I was in another world. At the Hosp., the Doctor's on call put a stop to that BS, Yes I was going to have a Surgery, but not until we straightened out the Malnutrition that had caused me to gain weight & keep gaining for the last 2years,& being told I needed to take better care of my self & lose weight, & Zap me with enough Antibiotics to Drop an Elephant (I'm an MRSA carrier). After I had my first Grande Mal, they decided to go ahead & open me up, I was losing fluid (Protine) thru my skin & just Bloating more & more... My friend the attending surgical Nurse told me that they ALL were shocked when they opened me up Had to clean out the Infection as they removed my Colon & rectum & were watching my body continue producing Infection as they kept cleaning... My friend later told me that my colon, rectum & the portion of my small intestine was so eaten up that it looked like it had been scrubbed with a wire brush. my Ille sits oddly for this reason. I was admitted on Mon. August 11,2014, & discharged Oct. 31,2014, I had 2 more bouts of MRSA, & J Plugs wouldn't work so they had to pen me 4 more times before they let me go home... the next 2 years I had 4 more surgeries as nothing was going right the 3rd Surgery was MRSA again & it ate a hole in my Vaginal wall so they cleaned & repaired my wall... the 4th one was another clean out of an obstruction & infection. .. been doing ok with occasional obstructions I can work thru with extra fluids & everyone on Standby, I been good for 3yrs as far as MRSA attacks. last Nov my GI Dr., performed an Esophageal Dilation, may need again soon, Hiccups (Hard ones) & choke on nearly everything I eat or drink... It's been a LOOONG 5 Years( actually 7+). I started out healthy, thin, & strong... now I feel like I look like a Pudgy Slug I'm still fighting Malnutrition... all of this contributed to getting a FULL SET of DENTURES 3Years ago... What an Adventure, I promise I Don't wish any of this on anyone. I've remained as active as possible ( I turned 65 a couple of months ago), (All of Our Walmarts got to know me as soon as my Dr. said I could drive, I hated the walker that I had to use for about 2 years,( so I Love those big old clunky carts), I use them as my Safe Walks, I walk up & down each aisle, & when I buy Groceries that ads stretch & bend, that's 2 - 3 hours at least twice a week, since I push a cart I try to buy at least one item, usually a card for one of the grandkids. & now I've been participating in water exercise at the Gym, Thanks to being 65 & now a member of "SILVER SNEAKERS"... The best of Wishes,& God's Blessings to ALL of You & Your Families that are going thru this or any life changing Illness.
I was first diagnosed with Ulcerative Colitis they removed my colon due to dysphasia they gave me a j pouch. 10 years of going to the bathroom 15 times a day and strictures in my small intestine right at the hook up to the j pouch and also inflammation I then was diagnosed with Crohn’s disease they gave me an ileostomy because of strictures which was supposed to be temporary but I decided to not have surgery to hook me back up because after 4 bowel surgeries I’ve had enough. so I still have the j pouch intact and I still have my ileostomy as well. I also have pains in my bottom like I have to pass a stool and I pass mucus and I get lots of cramps if I eat fibrous foods and then I have a hard time with leaking so I wear pads in case.The ileostomy has its good and bad points and for the most part I feel better than before but I have issues I’m allergic to the adhesive on the bag so I have to put cortisone creams on every time I change cause the itching can get terrible and the rash can cause the bag not to stick. I’m currently on Humira. Life with IBD can be a real challenge, thanks for posting your experiences with this terrible disease it helps me and I’m sure a lot of other people as well to deal with their everyday struggles!
We have a lot of the same issues it sounds like! I am glad I am not alone with pain-in--the-butt IBD! Thank you for sharing your story with me Marilyn :D
I have friends with ostomies due to motility disorders and I don't know a lot about them. But the pressing issue is I need to know what eyeshadow you're wearing, as a good purple is hard to find :)
ReineDeLaSeine14 try Morphe 35P pallet lol
Love the beginning :)
I love my ostomy. No more running to the toilet and using it despite what awaits you there ;)
PS: Keep your colon as long as possible. Everything has its place there, if you remove something, things can get wobbly.
Realfritzi
What do u mean by "wobbly?" I have the choice to keep mine (at least until absolutely necessary down the road) or remove it now and not have to risk doing more surgeries. Can u explain what u meant by your comment? Thanks so much!
Realfritzi wouldn't leaving your colon put you at a much greater risk for cancer and further inflammation?
ReineDeLaSeine14
That's exactly what I think! But bc of the EDS my doc is concerned that if the colon is removed, that it could allow my other prolapsed organs to become even more prolapsed due to the extra space. He also wants to be sure I "like" the ileostomy before making it permanent.... But honestly, there is no going back for me and my colon and RP are only getting worse. Also, its a lot less stress on the body to do one surgery vs multiple ones, especially for people with EDS due to our poor healing ability and sensitivities to drugs. Plus, with all the gut dysbiosis I have, getting rid of the colon could significantly lower my inflammatory problems and chronic infection issues... And honestly, it just downright makes me nervous having a dysfunctional colon hanging around the ole bod, lol. Are they suggesting surgery for you?
True. My comment is directed at surgeons, who are allways happy to cut something out. You have to weigh the pros and cons beforehand.
If you have severe UC for example, there is no discussion- remove it.
Hi:
My tween sister has irritable Colón si que os suffering a lot and nobody understands her so you a great help.
Thanks a lot.
Lo ve from Valencia East Spain 😙
Last year all of my symptoms started they said I had UC and then they said i had crohn's did 2 colonoscopy 5 months apart said i was fine but found mucus when there wasn't supposed to be any still have many many symptoms cant eat pain nausea vomiting I go days with out going and no one can give me answers.
Michelle P Look into Behcets disease, just a possibilty
Similar situation
I must be one of the luckyish ones, i had to do a full clean out before my semi emerg resection. Lol wasn't a fan but I couldn't move for 3 days after from how sick I was so I was happy about it. Lol still tasted like shit though that's for sure 😂😂😂
Hello, you said you can eat, why do you need a feeding tube?
Capitola Hale I have not used a feeding tube in years.
LetsTalkIBD Oh, ok the video I watched as with your hubby was feeding you through the tube, old one I guess?
Capitola Hale they explained in the video that she hasn't used a feeding tube in a long time, but wanted to make the video to show (raw) how it's put in and how uncomfortable it can be. :)
Macaila Smith
That post was weeks ago, I forgot all about it.
You should too!!!
In your case, it seems your colon is basically a waste of space. Wouldn't it just be simpler to remove the colon, suture the rectum (ha - Barbie butt) and be done with it? I wonder if the small intestine would shift position to fill the space, and if that could potentially pull on your stoma. I wonder if there are long term studies.
how is that a barbie butt?
Soak=soul
Hahahah!
You are so sweet 👍