Hospitalized Because I Ignored My Detached Colon & Rectum (don't do the same!) | Let's Talk IBD
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- čas přidán 17. 05. 2024
- There are some things you NEED to know if you have a bowel diversion like an ostomy - because if you don't know them, it can greatly impact your health! I myself wound up in the hospital because my swollen colon blocked off my ostomy - it was terrifying! I thought I didn't need to worry any more about my lower GI tract. If I'm not using it, why does it matter? Let's talk rectal spasms, passing mucus, and diversion colitis!
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Hi, I'm Maggie and I have Crohn's disease. I am thrilled to be here sharing my personal experiences with Inflammatory Bowel Disease as well as living with an ostomy. I'm proud to share a little bit from a clinical experience as well, having worked as a GI pediatric nurse and ostomy telehealth nurse. I am so glad you are here. ♥ #ibd #crohnsdisease #ostomy
Hi Maggie! So happy you're doing well right now. I don't think I heard you mention in this video about cancer risk. I had ulcerative colitis, and they took my colon out on an emergency basis, but left my rectum in because they didn't think my body could survive that much extra surgery. But the rectal stump stayed plenty inflamed.
They told me it would have to come out because it was a question of when, not if, it would turn cancerous. I had it out about two years later, right after I graduated from college. After that surgery, they said, as they lifted the rectum out of my body it actually shredded right in their fingers, and that I would've only had a few years to go before it became cancer.
So, if anyone has a stump left in, but it's inflamed, they should definitely talk to their doctor about this.
Best wishes Maggie!
I didn't and you are absolutely right! Just pinned your comment so people are aware of this as well and can take it into consideration! Thank you for sharing!
Thank you for sharing your story
It takes courage
I know had a ostoemy for 1 year had it reversed luckily
But wow
What a thing to go through
Some really difficult mental issues to deal with
But your story made an impact
Thank you✌️❤️
@@delenebennett3010 You were able to have yours reversed, you are blessed! As for me, I've had it for over 45 years now, so I'm kind of used to it, at least.
@@tumunu
Wow that is a real long time
Well done to you❤️👍
It’s not easy I know
Im 12 yrs in and still have a very small amount of colon and rectum left. I’m begging for them to remove whats left.
I got my stoma 8 weeks ago. No one had informed me that anything was going to be going out the old way. A week after coming home from the hospital I realize that something was coming out. I started screaming for my adult daughter. I thought something had gone terribly wrong. Thank goodness for Google. She did call my doctor's office just to make sure that this was something that was supposed to happen. It still freaks me out. My colon surgery was due to all the radiation for my cancer. It totally destroyed my colon. No chance of reversing. Your videos have helped me immensely. The only thing I was given was some training as to how to change the pouch . I've learned so many tips on how to take care of my stoma and how to more properly take care of my skin around the stoma. Thank you for your videos. I was very depressed before I found you and your videos. My whole mental state improved almost immediately. Thank you.
❤Susan, I hope you are feeling more in control now. It's hard to know what t to expect when you aren't told!
@Plootyhooter yes, I'm doing so much better. At 3 weeks I wanted to give up not that that was ever an option. After watching several of these videos I've been fully taking care of everything without my daughter helping me those first few weeks. I'm feeling so much more confident . So happy that these videos are available. Believe me they are so needed since no one seems to tell you all that much coming out of the hospital.
Yep, I wasn't told that I would have mucus drainage and I have NO rectum or colon. The mucus build up is very painful! I better talk to my surgeon. I really don't know how to get the mucus out. My ileostomy, her name is Fountain is only 7 months old. I don't know if the mucus dissipates over time. 🤷🏾♀️
@vikkilawson27 it's cute that you call yours fountain. Even though mines just a regular ostomy although it seems higher up then most pictures I've seen, it was so runny and spurted so often I started calling mine Old Faithful I'm still sticking with it even though it's not doing all the liquid spurting anymore. It does still tend to make gurgling sounds. It would be interesting to hear what everyone calls their stoma. Until watching the videos I didn't realize people name their stoma. My daughter thought I was kind of weird when I started calling mine Old Faithful. I hope you get some answers to your mucus issue.
Hi, my stoma is called stormy because it was a little bit wild when I first got it (Nov 22) ❤
I have no lower GI issues, but I love listening to you talk! 😂 Glad I found your channel!
Me too
3 months ago I had emergency surgery because I ignored symptoms of a perforated colon caused by Crohn’s disease. Thankfully, my wife convinced me to go to the emergency room. I was being stubborn and trying to go to work. When she told the surgeon about it, he told her I would have died while driving. My message to anyone with Crohn’s or UC, LISTEN to what your doctor says and definitely listen to what your body is telling you! If I had waited any longer, I wouldn’t be here now!
Yes i wasn't told that you would have mucus, passed a little in the hospital and nurse told me she didn't know if that was normal.
Ive had my illeostomy 9 years now, last year i wound up extremely impacted, thought i should not be having anything coming out, i too had to go in and in wasn't stool it was an extreme amount of mucus..ugh wish I would have known, nice to listen to you let people know these things that we are not told
You always look so good in the color peach. Much success to your second channel.
Aw thank you!! 🩷
It really is a lovely color on her! It makes her complexion glow :)
Totally!
I didn’t have miss for nine months after surgery. Three times I passed mucus. I have never heard this information. THANK YOU.
Hi, Maggie. Thank you so much for your posts. Its astonishing how much we aren't told as patients, & how little information we can find on Dr Google, so its a huge relief to have found you talking frankly & openly about this very difficult subject to share
I have a loop stoma and not enough mucous comes from the tiny mucous loop. I still have to go to the bathroom and am having trouble similar to your history. I am scheduled for a proctocolectomy in March. I am nervous but truly feel so traumatized by the troubles with my rectum and colon it is the best thing to do! Thanks for all you do!
You are helping so many people. Thank you.
I’ve had a stoma for a year now, nobody told me I would still get a discharge from my back end. It was scary the first time, I was horrified to let it go but the urge got the better of me. Thanks for sharing & advice, always appreciated.
Yes- the colon is still alive and will produce debris. I’m sorry your doctor didn’t apprise you of that.
Girl we can’t lose you. Be careful for you, your family, and you CZcams family. Glad you are OK.
Thank you so much for this honest video! 🥰
My wife had rectal cancer and her rectum out 23 years ago at age 23. She has her entire colon but she gets those phantom rectum pains to this day. Do not expect those are really ever going to go away. She does really good with it. She had a tumor the size of a apple core in her rectum and she was always constipated and bleeding. Her sjit doctor told her for a year it was just a hemroid to use a cream. She hid from me how bad it was and one day she forgot to flush the toilet. ?it looked like we had murdered someone in the bathroom. I made her change doctors from IHS or indian health services to a real doctor and they did a scope 2 days after seeing her and told us. So we go to the GI doctor next and he looks it al over and gives us the options. They do a lot of scans to make sure it has not spread and she had a ovrerian cyst they thought might be a tumor that spread so we had to get that checked out next. The did a scope in the abdominal cavity to look at it and remove it. Then he really wanted to do radiation and chemo to try and shrink it be we decided to do the surgery first and see if it was needed. So for surgery he was way different. He stressed to us how important it was to clean out first because if he cuts through the stool it can give you a bad infection and even kill you. Your bowel is full of bacteria and you do not want that released inside the abdominal wall. So it really surprised me to hear you say that. She took meds to clean out and the day of the surgery they gave her like 7 more enimas on top of cleaning out because he could not stress enough how clean the bowel needs to be. He was like a 70 year old asian doctor that had been cutting his entier time s a doctor . so they did the surgery. He was not able to save the rectum once he seen how big it was so they made the colostomy and removred the rectium and it was a 10.5 hour surgery. She did developed a lot of adhesions and they cause her a lot of pain still but overall she did real good for 20 years and never had to have the radiation or poison either. He was so happy we talked him into doing the surgery first because of not doing the radiation it was easy to do and heal as radiation can really damage and slow down healing. But the last few years she has gotten a huge hernia around her ostomy and her intestines are just pushing the abdominal wall out about 6 inches around the ostomy and pushing the entire ostomy out a good 4 to 6 inches on that side of the stomach. Hers is a sigmoid ostomy on the other side of yours and she has all the colon.
So if you ever feel like the muscles and skin around it is tearing and it starts to poke out go get it checked. We are waiting to see the surgeon now to talk about fixing it. He wanted her to loose 30 lbs and do a colonoscopy first. So we see him next week to see what the options are. He said it will be a very big surgery and it he is really worried about the adhesions. If she leaves it it might obstruct and if he tries to fix it, it might obstruct. So we have to weigh out the options . Sorry to rant on I just felt moved by your story and wanted to share. I might visit your other site as my health is a train wreck to and I am now bladder and bowel incontinent. I hope our stories might help others going through stuff. We have been through a lot together and been married since my 19th birthday in 1995. I suffer with gastroparesis for about 7 years and almost ended up with a feeding tube. The GI tried to talk me into it for a year and I refused and instead found a doctor 5 hours from home to do a gastric stimulator. It has helped so much!! GP is a horrible disease and causes nausea and bloating and suffering. I can imagine Crones is a lot the same when it comes to that.
You are such a joy to share your health with others. God Bless you!!!
Hello and very interesting as I never realized how complicated this all is ...what we have to deal with as the human body is so complex I am so glad that we have people out there like you and your friends that can give us some guidance. Thanks again and take care 🙂
Maggie your an incredible person and these videos are so educational.
This is helpful information shared in a kind and upbeat way. Thank you, Maggie!😊
Love your energy, so sorry that you deal with all this and pmdd
🩵
I have a temporary ileostomy, I’ve had it for 11 months now, never have I ever passed mucous .. I don’t have IBS though, had a bowel endometriosis so had a rectal resection to cut out the deep infiltrating bowel endo, but let me tell you… the anastomosis broke open and I’ve been struggling with a penny size hole/wound since then SMH. Surgeon confirmed it’s 90% healed… but the mild pain and discomfort especially when seated is FRUSTRATING!!!! Plus having to empty the bag 7-10x daily is messing up with my mental health, can’t wear just anything. So I barely go out and when I do I gotta wear something oversized!! For 11 months I e been super depressed and in constant discomfort abd super angry at my surgeon for not doing a wound graft procedure when he saw that it hadn’t healed after 6 months …. Can’t wait for all this to be behind me. Just want my life back . Sorry for venting .
I'm so sorry. I wish you good health, both mentally and physically soon! This too shall pass. 🫶🏾
@@Afrinaturality ❤️❤️
Thanks for sharing this informative video! It’s especially helpful for one who rarely takes care of a patient w/ a colostomy (w/ intact colon & rectum). I saw a mucus ball from a patient once & had no idea how that was possible, but it all makes sense now! I’m so sorry this info was not shared w/ you right after your surgery & it led to a hospitalization 😔.
Just to let you know, on every one of your videos that I watch I skip forward past the intro that shows your wedding pictures. Because, I tear up EVERY TIME! Even though I don't know y'all, I know that that day was so very happy for y'all and I was, and am, so happy for y'all that you have each other. I keep y'all both in my prayers. Thank you for all you do in sharing vital information with all of us.
Thank you so much Maggie. I just developed an abscess that I’m convinced is the mucus trying to find an alternate route. I have the spasms and I’ve had might right hemi colectomy for 12 yrs now. It’s so important yo listen to your body and be your own advocate. They sent me to obgyn and I basically had to fight for a visit with my GI M.D.
We shall see what’s next
Thanks, Maggie :)
❤❤Thank you so much for sharing the most informative symptoms you have experienced.
Your channel helped prepare me for my late stage colon cancer surgery and subsequent ileostomy. Some things definitely went wrong. It's too long a story. I've had my ileostomy for about 3 weeks now, and I'm still learning how to deal with it. I also have a drain coming out of my rectum because I developed an abscess where they put my colon back together. At some point I am supposed to have a reversal surgery. I binge-watched your channel for a couple months before my surgery. You definitely helped me understand more than I would have otherwise.
It's sad and angers me that we are barely told any of this after our sx's. My rectal spasms are sometimes worse than childbirth was and there are times when Im passing mucous up to 10 x's a day. I had a colostomy 18 yrs ago but SBS from so many resections. Have 5 ft of small bowel left. High output up to 4500 mls per day. Stoma is flat so skin is not great. Have an obese belly. On TPN, cant lose weight, constant N & V. Can eat 5 bites of anything at a time and have dumping syndrome. Im miserable, pretty much bed bound and on disability. 57 yrs old live with my 76 yo mom, worri3d about my future. Ty for your channel...so informative.
Thank you I. Really get a lot of answer that my Doctor hasn't told me
Thank you for this information. I tell my husband you are the girl version of him on what he has gone through with his Crohns Disease. He has always had issues with his diversion colitis and the doctor never mentioned the fatty acid enema, but he is definitely bringing it up at his next appointment:)
Thank you for this info, Maggie. Got my colostomy in March, 2023 (this year) and I was told that the fluid passing was normal and would eventually stop. Well, this week (and last week) I had fluid pass much to my surprise. None had passed for quite a while…. I will keep an eye on it…. Thank you. ❤️
I just found you and am looking at a permanent colostomy. Your information really helped me.
I’m so happy I saw this vlog. Thank you so much for all your great informative videos Maggie. I’ve had my ileostomy for about 3 1/2 years now. About a month ago I woke up feeling rectal pressure and as though I could have a bowel movement. I went to bathroom and I was frantic!!! I began passing blood, some liquid mucous but also something which was formed like stool but did not look like stool. I had never passed anything from my rectum since my ileostomy and I was scared. Long story short I had gone to my GI doctor and was told it was normal it was dry mucous.. sorry for being graphic but I just want you to know that you were the only one ever who mentioned having to pass mucous after diversion. That passing of mucous went on most of the day. I am now seeing a different GI doctor as I felt my doctor was kind of blowing me off and I needed to know more about this. I do get rectal spasms at times. I am going to talk more about this to my new doctor who listens well and does answer my questions. I have learned so much from you and I cannot thank you enough!!!! Yes!! That mucous becomes uncomfortable and builds up for sure. First time in 31/2 yrs is a lot of mucous!!!!
Love to you and Zak and your pups. ❤️🐾
God Bless & Thank You for sharing... Your helping so many ❤🎉
Oh Maggie, I had my loop ileostomy February of this year 2023. My gut motility I’ve gotten so bad. Basically Ehlers-Danlos has done a number on every system in the body here.
But, my ileum was so filled with back loaded, fecalization… I wondered about that clean out too. But nope, I had the vomiting of digested feces that was worse than any exorcism scene! It was not right. And it just kept coming. Finally with an NG tube, it was six canisters of suction. The staff could barely cope with the fragrance. My husband was the only one who could really help me. It was a nightmare to say, the least. My heart goes out to you for all you’ve been through also!❤
Hi Chris, So sorry about blackie. Give my condolences to Hollie and Ellion.
Ditto with the UC and keeping the rectum. My surgeon told me very early on that if the rectum was kept, I would develop cancer there......needless to say, I got the Barbie butt quick smart !! Life is great now so anyone who is hanging on for dear life,le.t go of the bits you no longer need, you'll be much better off without them!! Thanks for your videos Maggie,they really are helpful,take care,
Bron, Sydney Australia 😊
Thank you so much for making your channel. You are helping me so that I can help my husband ❤
Those earings are so pretty 😊
I had emergency surgery just this May. I’ve learned more from you and other you tubers. I still don’t have a lot of answers to my questions. I woke up with 2 stoma’s. one is a loop one and the other is where all the output come from. I only have had mucus come out of my backside & the loop ostomy once. I was freaked out cuz it came out looking like white turds. It completely filled the cap (Band-Aid thing )I wear on the loop ostomy. I feel like there’s so much I don’t know and like someone else in the comments, I too was depressed until I found your channel. I finally have an appt with my stoma nurse next week and I have a list of questions. Right now I’ve been switched from the Manuka honey rings to paste to try and fix my raw & bleeding skin around my stoma. They now are guessing that I may be having a reaction to the honey. It’s been an eventful few months as they found I have stage 3 ovarian cancer as well.
I had white stools due to Grave's disease (hyperthyroidism.) The doctor said it was because food was passing through so quickly that my body wasn't able to absorb the fat. The fat is what made it white.
Watching this while eating. ha ha one or two dry heaves every time mucus is mentioned. So Glad you are doing better. thank you for what you do.
It blows my mind that you didn't have to do a full clean out prior to your bowel surgery. I had a right hemicolectomy in 2021 and I did pretty much the same prep as a colonoscopy (plus antibiotics and lots of ensure clear). I had endometriosis in my colon and my appendix was missing, and I have a family history of colon and appendix cancer. I did not need an ostomy at this time, but the possibility is always in the back of my mind if I have more issues down the road. Thank you for educating :)
I can't thank you enough for this info. No one told me that the mucous discharge is normal.
After following your channel for years, unaware then that now im getting my own ostomy
Thank you, Maggie for keeping us informed! ❤
Hi,Maggie.
I hope you are both well. Happy New Year.
I have just watched your video about rectal discharge. I was never told about this
Sorry, I pressed the wrong button, I was never told about rectal discharge. My introduction to it was experiencing the 'smell' it became really bad. I was told this was how things were going to continue & I should use suppositories a couple of times a week. I finally, after 3 years, changed to microlax enemas, which were a lot easier & definitely quicker with a much better result. It's a shame that doctors don't have a better understanding of what it's like having a stoma, but hey. Take care & look forward to seeing more of your videos ❤
Peachy pink colour looks so good on u
Very informative! Thanks for sharing in such a professional manner, as you always do. I’ve often wondered how that works. My Crohn’s is mostly in what remains of my small intestine. Mucus production seems to increase with flare ups for me,so perhaps this continues after ileostomy surgery, which would account for the variability in mucus build up.
Thank you 🤩🤩💖💖💖
Thank You
Hi I have to have ilestomy for 13 years and I didn’t know it was possible for mucus to stop with a surgery because I get hemorrhoids and it hurts .Thank you I will be discussing this with my doctors this week .
Interesting presentation. The big problem with diverted Crohns and UC bowel is the increased risk for cancer. Typically this type of surgery is done in emergencies. Except for elderly patients with short life expectancies, I strongly advise these patients to get rid of the residual bowel. The cancers here tend to be especially agressive as well.
When i got my ileostomy in March this year, I was told I would pass mucous. The way it was said I thought it would happen once or twice to like finish cleaning out the colon. I then had it happening every day for a couple weeks and so searched the internet and saw a video from someone "What I wish I would have been told" regarding her ileostomy. She said you pass mucous often because, as you said, the colon is still alive and one of its jobs is to make mucous to protect its lining. So then I knew it was normal and would happen all the time. I've gone weeks with having some come out once or more a day and then gone weeks without anything. I also am having my anus and rectum removed next month and have my ileostomy changed into a colostom, due to cancer, and will have a Barbie butt. Good information to have that I might feel spasms. So thank you for putting out this video! ☺
Kind of off topic but my brother had an emergency tracheostomy for a throat cancer. It was an equal distance for me to take him to our dad's house and drive back as for Dad to get him.
Thank goodness, I'm a respiratory therapist and they had not told him anything about the stoma or the tube or done any trach care for TWO DAYS. The inner cannula was completely clogged. They had gotten him a speaking valve, at least, so he knew to deflate the cuff.
He and our dad felt a lot better getting him home knowing how to handle stuff.
I understand what Maggie was saying your body has to produce mucus in order for your intestines have to be lubricated to help push out your business. At least that's how I understood. I do drink alot of water because I do feel dehydration.
God Bless!
WHAT?????????? This is crazy I had my surgery around the same time as you and remember when you had the mucus. I had to give myself an enema before going in for my surgery.
Well this is interesting. I had a blockage went to urgent care with stomach pain and went into surgery pretty quickly and came out with an ileostomy. Had planned on a reversal but after talking to the doctor I decided to keep the stoma due to possible side effects and didn't want to be a slave to the toilet. I did have the scope to look at the reversal (which would have been doable) but they never said anything about build up of fluid in my butt and I have never had any discharge except after surgery for a bit in the hospital. Glad you made this since it would suck to find out I had a bunch of stuff trapped in there which I imagine might be bad maybe even fatal anyway I now have something else to check on :)
Goodness! I really wish I had even an ounce of this information when I had my ileostomy 3 years ago. My entire colon was removed to save my life but since then I have pain in my rectal stump and a constant light brown watery fluid, sometimes with blood. I'm always leaking and the moisture has damaged my skin there as I take steroids so my skin is quite thin. My GI consultant has never helped me with any of this, offered any advice although every six months or so the pain gets so bad that I had to have painful dilations to clear to watery discharge out. A couple of times it's burst out of me when I've not made it to the bathroom in time. My Dr still isn't putting me on the treatment that I need!. Thank you so much for this invaluable information. I shall certainly be taking it up with my Dr at my GI appointment next week. Thank you for all your ongoing help and advice, you're a true gem. Sending lots of love from the UK ❤️
Oh honey… so sorry to hear this. Can you change to a different GI specialist in the UK? I’m in the US. I wish you the best.
@glancycorner7425 Hello there, thank you for your sweet comment, and yes, if nothing changes after the appointment next week, then I will be writing a letter of complaint and insist on a different doctor. I've already started drafting it! Thanks again for reaching out to me, that was so very nice of you 🩷
I’ve had my colostomy for nearly a year and this is the first time I’ve heard of mucus getting impacted. I’m a bit freaked out now. I knew it was normal to pass some mucus but I haven’t passed much in this time.
I wish that you can say centimeters and millimeters also. Not just Inch. There is many patients all over the world that follows your channel. I recognize your symtoms. I also have chron and they cut in my rectum for drain all the fistels that come up. Later on i got lumps in my colon and they operate me and put a stoma on my belly. I got chrons even now after the operation but it feels much better, I have pain time to time but I feels so much better with my pouch and I don't like before not got to run and look for a toilet and often to late so i got my pants full. In those days i always got a spare pants with me and I do it now if I got a leak. Thanks for a great channel. By the way I'm from Sweden.
As a nurse that worked in a nursing home with lots of colostomy/ileostomy appliances i never knew any of this. I dont recall it ever coming up when looking up how to care for the patient.
Hello my friend you are awesome
Just to offer another perspective: I usually only need to go about once a month. I have a Colonoscopy so the remaining part of my colon is fairly short. Hence minimal mucus buildup and less frequent passing rectally. Spasms are a bitch though, especially if they wake you up from sleeping. Ugh. Nobody told me beforehand either, which is really weird. You’d think it would be standard procedure to educate your patients about future risks and just general goings-on. 🤷♀️
Like how hard would it be to have a print out available for patients? They do this for orthopedic surgeries!!!
I have had my colostomy for over ten years due to faecal incontinence. I have a yearly checkup. I have got more info about mucus removal from watching this video than l have ever got from the stoma nurses that l see. ( They are very good though) l get a very sore back passage and it drives me mad because it itches so much and l think it could be the mucus draining out. I haven’t had a case where l have to manually clear it for a while. The urge to go to the toilet is so bad until it’s all gone. This can sometime be quite painful but mainly it’s just uncomfortable. I shall now follow this page as l think it will help me understand things better.
My cousin has no colon and now only 75 cm left of the small intestine. It is a brutal situation.
I usually get an urge to go to the bathroom right before and during my period. It feels horrible and then and relieved.
Maggie, this one Caroline really should watch while Paul is still in hospital.
She is having to be his advocate and learn on the run.
I was wondering if you could do a video about the potentials of scar tissue -- and what adhesions are -- after abdominal surgeries. I suffer from this myself, and I think many people do not realize what can happen after surgery and symptoms they should look for that could represent an emergency situation. I ended up in emergency surgery a year after my ostomy takedown due to a small bowel obstruction due to scar tissues.
Thank you Maggie!! I’ve had an Ileostomy for 15 years and a few months ago started to have pain & bleed a lot from my rectum. Going to specialist soon & most likely will need to remove it and have Barbie butt. I’m so scared of how much this is going to hurt. Any advice on how to deal with the pain? Thanks
I don't pass mucus anymore ever since I have taken morphine
I wish I had been told before surgery j could possiblely lose partial or complete bladder function. I now have a urostomy to go with my permanent ileostomy.
Maggie, can you tell me what skin product you use before you fit your equipment. I am now allergic to every brand of ileostomy equipment. I feel utterly despondent about it. Had my ileostomy since 1988.
Many thanks, Jane, in the UK
Hi, can you take fennel seed tea for the spasms and other benefits. Hope you check this remedy out and wish you good health and pain free life as much as possible.
Wow, thank you so much for this video. I had surgery for my stoma August 17 of this year and have the urgency to go to the bathroom all the time. lately I try to hold it because I was never told to try to pass the mucus and the couple times that I did really have to go some stool came out as well. Is that normal too?
I have the same problem. I still have my entire rectum and anus, but I don't pass anything and seldom have the urge to go poop. I also had hemorrhoid surgery and some rectal repair done about 17 years before my colectomy and ileostomy surgery, which was almost 3 years ago now. I never have had a concrete diagnosis of Crohns, but have been diagnosed with UC and ischemic bowl prior to going septic 3 &1/2 yrs ago, but also diagnosed with several other GI diseases or disorders. Still not sure, after the colon was removed and examined by pathology it said chronic history and evidence of scarring and inflammation of the colon with strictures is evidence of possible Crohns disease. Back to the mucus part, lol, I don't actively pass mucus. I have very dry thick mucus that forms into what resembles a solid short piece of formed stool. It doesn't look quite the same though and I have to go in digitally and remove it every so often. I seldom get all of it as it forms just above where I am able to reach. I know, TMI, but we're all in the same boat, so to speak. Might as well be real and frank about it. I don't know if I had the loop or straight ileostomy though. Any ideas on how to find out? I had my surgery and after my last post-op checkup, I have not been back to the hospital, surgeon or GI doctor that ordered my issues to be looked at by my surgeon. Reason for this was I had changed jobs, nurse, about 3 months before I went septic and had to have surgery and had to go on disability. In that short 3 months time I was about 10 days away from insurance picking me up. So all of the expenses have been out of pocket for us. The total charge for all of my ICU & surgery was over $70,000.00. I have had to wait for disability to kick in and am just now getting coverage from Medicare and Humana. I expect to start fresh after the 1st of the year with a new doctor and get all of the specialists lined out and set up for exams. I have not been hospitalized since my surgery. I have had an ER visit and 4 doctor or urgent care visits for sinus and urinary infections. I will be 61 this coming April 2024. I hope I haven't waited too long for the several problems I have. Neurological, bone and joint disease, chronic pancreatic problems and the numerous prior problems and surgeries I have had since turning 30 years old. I was born and shortly after started having problems with my diet and constipation. So basically I was born with bowel problems. Also IBS and lactose intolerance. Also had gastric bypass surgery in 2001. Obesity due to stress, depression and hereditary on both sides of my parents. Wow! It is actually cathartic to write all of this down. I also have PTSD from my health and surgical past along with sexually abused by 3 of my uncles and my Grandfather on the maternal side from 5 to 19 years of age, at least that's what I can remember. Wow, that's a lot of 💩 to pack on 1 little girl. Sorry, but this is helping me and hopefully may help someone else who reads this. I have been depressed mostly on since my teens and been suicidal a few times, but fortunately have worked through most of this. It does seem to cycle though, about every 15 years, but also after super stressful experiences. Thank you for your comment. I'm sorry I dumped all of my 💩 on you, lol. I am currently on the mental mend and doing better each day. Truthfully, I don't have the physical or mental strength to fight anymore. I'm not suicidal, just tired and ready to go see my Jesus. I love my family and friends so much, but I am so exhausted from the constant battle and always waiting for the next problem to come along. I assure you that I am not suicidal, my glass is half full again not half empty. I have had several wake up moments over this past week alone, that is helping me tremendously. Sorry again, so much to read and thankful for the opportunity to talk to someone else. I know I'm not alone in this. God bless and thank you.
Thank you Maggie, excellent video, I wasn't told about the mucus happening after my surgery. Do you still deal with the mucus? So I take it that it's normal ?
I had my colon and rectum removed and got the hole closed up, so fortunately I no longer have to deal with it! It seems most patients aren't but the mucus is normal!
@@LetsTalkIBD link to your second CZcams channel please
What if you don't have mucus? I've had an ileostomy since March 2023. A permanent one. I haven't had mucus or anything. I've lost weight (135 lbs to 105 lbs/5'7" 😥). I'm dehydrated all the time (aching shoulders, lightheaded, muscle cramps. I've got a port now. It won't help through the dehydration, but the hospital can give me my fluids without so many sticks to get me to the IV.). ANYWAY...Mucus? I don't understand.
I have IBD but from no gallbladder. The nurse practitioner I see said mucus isn’t normal that I have severe inflammation. I hope that’s right and this is normal. The NP wouldn’t order fluids for me I have to go to one of those IV places and get it on my own but I always feel so much better after.
I had ulcerative colitis from aged 23 when i was traiming to be a midwife. I had loads of polyps over time and aged 48 was diagnosed with a large malignant tumour. I had a total colectomy ( I didn't have bowel prep either)and opted for a j-pouch. I had a temp loop ileostomy for 4 months, i also developed a stricture, which has made it difficult to empty my pouch. I can no longer eat much fibre or veg.
At some point i will opt for a permenant ileistomy and 'barbie butt ' as my surgeon calls it!
I use catheters to empty my pouch when things are really bad. Is that not an option for draining the mucus?
I may be facing a resection in the future, can you recommend resources on this? Like YT videos/channels. Thanks!!
It has been my experience , after 45 years with an ileostomy, that most doctors don't know much about ileostomies. Unfortunately, you need to be your own doctor. Educate yourself. One good way to do that is to follow Maggie.
How does one find a GI dr who is knowledgeable about ostomy issues? They know how to give you one but don't know how to treat the problems that follow. Here's the problem (sorry is this is TMI), I get the mucus build-up but I can't pass it. I literally have to dig it out. It is so painful and probably dangerous. My primary care dr has no clue how to handle the issue. I can't be scoped "back there" because scar tissue has blocked the rectal opening. I don't know what to do.
The best way I have found is join an ostomy Facebook group and make a post asking the best doctors for your area! I had the same issue a lot because of stricturing- I totally understand your pain!!
@@LetsTalkIBD Thank you, Maggie. I'm so glad I found you on CZcams.
Hey Maggie, I had a colectomy and had an ileostomy placed in Jan 2023. I passed mucous a few times a week until a few months ago. Nothing since. Should I be worried?
I would definitely pay attention to any bloating/rectal spasms and check in with your surgeon! Some people produce much less mucus so this may be your norm!
what was the exact symptom that moved you towards the colon removal. I asked the surgeon about these same symptoms..and got nowhere. He said the colon was nothing to be concerned about!
I had an ileostomy 7 years ago. In recent times I have had to go to ER for CT scan and was given two enemas. I had a lot of stool
Come out my rectum and I continued to have bowel movements through the night. It happened again a month later and I could not get the FLEETS enema tip into my rectum. With much effort I had another bowel movement of several pencil thin stools several times. My surgeon doesn’t seem concerned, but I am. This shouldn’t be happening. Any suggestions.
Iii have a loop .the second hole is very tiny. You couldn't see it if you didn't know it was there. I have had fluid and .wash out through my second hole.
dont know if others have the same problem but I cannot at all hold the mucus in to be able to make it to the bathroom in time.. I have to wear a pad at all times because it literally just falls out of me at any moment. Next month will be two years of having my colostomy and I seem to produce more mucus and have to release it a lot more than I used to. Really almost now on a daily basis, instead of every 3 to 4 days in my early days of having it. It is so very annoying but still would deal with this a million times in comparison to colitis.
هذى مايحدث لي ايضا😢
Perhaps there is still active disease in your remaining rectum?
How is mucus able to travel from the colon into the stoma? Do they place loops quite low?
What is the strongest odor reliever for my ostomy?
I only have the stump of my retum. Can your experience of accumulated mucus not coming out happen too? Also, do water enemaschelp to listen the hardened mucusvor any other type of enema?
It’s 12 years since my illiostomy, I originally had a loop illiostomy, which two years later was made into an end illiostomy
, I have only ever passed anything from my anus twice, both times I have ended up with Sepsis and been very poorly. The first time was ten years since my first opp and just 4 weeks ago. In between and since 4 weeks ago nothing more.
I am on the waiting list to have my Colon and rectum removed in the U.K, should I be talking to my Consultant?
I have a question if you have an ostomy do you still have a period or do you just go pee and poop
Hi Maggie. If you couldn't use enemas etc to help pass the mucus, what method did you use to try and relieve it? Is there anything that worked at all for you, to stop it building up? This information would be really helpful, thanks.
I left the comment and a question on your irritated skin video where you were driving to see the WOCN I cannot get to see a stoma nurse I only had like 15 minutes with her in the hospital right as I was checking out and I’ve called since I’ve been out and no one has one. How do you find a WOCn in my skin is now irritated. I’m going nuts because I have convexity and I was not sent home with any convexity product. Really hardly only two bags.
Here's a site from UOAA on finding a WOCN! I'm sorry you're experiencing this! You might also find it helpful calling different manufacturers (ConvaTec. Hollistet, Coloplast) because they can talk you through products and send you free samples to try! www.wocn.org/learning-center/patient-resources/find-a-nurse/
I have a question.
I had a total abdominal colectomy with ileorectal anastomosis 2 years ago. The doctor made a point to let me know due to my specific disease process, I'll only have about 18 years with it. He just barely approved me for the surgery because I have very little control of the rectal muscles. He was also concerned because I have POTS/dysautonomia-- he thought I'd end up with a port doing at home fluid infusions.
I've recently started having issues-- it's getting harder to have a bowel movement because the rectal muscles aren't working together and I've had 3 nighttime "leaks" in the past week-- I've never had that happen.
Once you go back for an ileostomy-- do they automatically remove the rectum? Is it something you can ask for? I'm concerned about the whole mucus situation because I'm young (33) and have had a hysterectomy.
Hi there! No - those with ileostomies dont automatically get everything out! It really depends on the individual and their condition. Some are left with rectal stumps, which still produce mucus but I don't believe quite as much as someone who has their colon. I lived with my ileostomy for 10 years before removing the rest!
????? Do you take short chain fatty acids now with out your colon?, are the short chain fatty acids to keep an institute colon with ileostomy healthy or are the short chain fatty acids needed for the rest of your body???? You are awesome 😁😁😁
No - I have nothing left (not even a hole - I had it closed up) so have nowhere an enema can go! :)
Classic Maggie, I know it's all gone, but you stated the colon absorbs nutrients such as short chain fatty acids wondering without the colon if you take short chain fatty acids orally now for your body or if the short chain fatty acids is just for an existing colon with ileostomy to keep the colon heathy rather than the body as a whole needing them ? , did I tell you, you and zac are awesome ! @@LetsTalkIBD
It was just for the colon! Since food goes through the rest of my intestines, it gets the nutrients it needs to sustain itself! :)
Thanks Maggie just curious as I will be getting a looped ileostomy soon :).
Just give yourself an enema with warm water if it doesn’t completely clear the first time do it twice your rectum should be completely clean at this point
Remember - not everyone has the ability to do enemas or should. In my case, I couldn't even fit the tip of an enema in there because of scar tissue and stricturing
I have one doubt my mother went through illeostomy surgery a month ago whatever she ate pre surgery for 7 days is still there in her colon and rectum , She can feel it in there bleedy smelly and filled up doctors said no issue it can be there bla bla bla but how? Would not that keep on decomposing and cause issues in future then they sugested If i feel like cleaning that up I should get her enema ?
Does this still happen if you have a colostomy, having a section, detached from my rectum and up the descending colon some
Yes! If you have any portion of colon or rectum that isn't part of your functioning stoma, it can still produce mucus!
@@LetsTalkIBDit has to, or it can? My BF has Ileo and for 6 weeks nothing came out. Has pressure in rectum, can it be this? Should we do something, or ask the Dr? Thank you
What's a biologic?
Dear maggie,thx again for your video.have you talked with people who have had reversals.i am 7 months out and have had aterrible time
I've had a colostomy reversal and ileostomy reversal. What is the problem you're having?
@@ProtectDemocracy-VoteBlue fecal incontinence,mutiple times aday,pain in bum
🌼☀️
Weird question maybe, but I noticed the dogs in the intro, and I wondered if you've ever had them try to sniff/dig their nose into your bag/stoma area. I ask because I had a g-tube as a kid, and dogs would often sniff and dig their nose around at it through my shirt and it could be quite painful/uncomfortable, if they bumped it around. Usually after nudging their head away they would get that the shouldn't be messing around there though.
Thankfully they all seem to try to be careful and don't bug my bag at all! Occasionally if they're excited, they might jump up on me and hit it, but as long as my bag isn't completely full it doesn't seem to cause any problems!
I got scared when I passed mucus because I wasn't told about it