I could offer my own experiences with cramping, period and rectums, but I choose to tell you how adorable you are. Maggie, you have a very special talent for connecting with people. I am 70. Wow, that''s hard to write. My husband died recently after 50 years together and I swear I put you on for company...friend company. Whenever you and Zak drive into Philadelphia, you pass by the apartment I lived in when we met. You are an amazing young woman and have inspired me in so many ways. I'm sorry you have to go through all this mess but like my mentor said, "Life is a suffering." His English wasn't as good as his Russian, his original language. You have really circumvented your issues and created wonderful life. BTW, my daughter is 25 and fabulous. We adopted her at 3 hours old. They kicked us out of the hospital. I took her to Wendy's because it was so hot and we needed water. She loves the story.
I do not have your GI problems specifically, but I have Lupus that affects almost every organ system in some way. I just want to say thank you for being so awesome at what you are doing. You take time out of your crazy life of renovating a barn for a wedding venue, being newly married, dealing with your medical issues, (even when you are so ill) to make these videos that deal with so many issues that people are dealing with. It is awful how little time doctors spend with their patients discussing all these things. Patients are left trying to find anyone that can help answer questions. And so many of these topics are so embarrassing to them. Finding someone with your nursing background and that can cover these topics with facts AND compassion is so rare. So I just want to say thanks. You are such a cool, intelligent, beautiful lady. I send you lots of positive thoughts, love, load of wishes for healthy days and hope for the amazing future you deserve.
I had a hysterectomy at the age of 50. Everything was removed cervix uterus tubes ovaries everything. Every now and again I feel like I’m gonna get my period. It lasts for an hour or so and goes away, but I still to this day get the feeling I’m gonna get my period. It actually feels like it’s going to gush which may sound a little gross but I think you know what I mean.
I have tethered cord syndrome and have a neo-appendicostomy and will probably need an ileostomy in the future. There's no nerve activity in my colon and bladder. I'm also a nurse and thought I was well informed, until I started listening to your videos. I've learned so much. Because if my spinal cord problems, I have bladder and rectal spasms, so understand where you're coming from. The day I'll need my ileostomy, I'll be prepared thanks to your videos. Thanks Maggy. ❤️(I really like the fact that you're not shy to talk about it. It makes life a lot easier) .
Hi Maggie. I've been a silent sub, I may of commented 3 times ish.... There ARE so many AMAZING exercises for pelvic exercises on RU-vid! If your not feeling well and NOT exercising as MUCH, that will definitely cause weird pains, spasms,discomforts and pelvic strange symptoms. The more active you are, even a 10 to 15 minute steady walk, if you can do longer walks EVEN better, but walking and increasing heart rate , works so well with ALL our body functions! Love you ! Wish you PEACE through this and COMFORT ! Love and light Take care♡ Mary
Wow, I never considered that you could have phantom rectal spasms or sensations. We’ve all heard of phantom limb, of course, and your pelvic nerve endings have also been cut, so of course you would experience phantom organ sensation. I hope you can find relief. You have been through a lot for such a young woman. God bless you, Maggie and Zac, and for the work you do here.
I completely agree with you Maggie. I have rapid transit and malabsorption, on TPN because of it. People constantly tell me all I need to do is eat… they just don’t get how much pain it can cause and how it just doesn’t work. Thank you for talking about this part of GI issues.
Oh my goodness!! It's awful, you and I are the same in this diagnosis. I have many health conditions that all suck, but this is brutal on the entire torso. I wish you relief!!
I found your channel while looking at colonoscopy videos. I'm getting a colonoscopy tomorrow morning. I started listening to you and I couldn't stop. I love listening to you. You are so open and natural. Thank you!
I so appreciate your honesty. I understand completely what it feels like to go thru horrible spasms. It is so difficult to describe to others...but you do it with competency and compassion. Though I don't have Crohn's, I have a whole host of other auto immune problems that result in my suffering with IBS-D. Your efforts here make a huge difference...Thank you!!❤
Same~Several...Like the most horrible menstrual cramps coming off the Rectum😢...Will actually awaken as it begins, and then can go several minutes to half an hour:(
It actually makes sense that this happens usually on your period. Your body releases prostaglandin so the uterus will contract, but this can also lead to cramping and spasming in other areas too. I get pretty regular muscle spasms, but they definitely increase on my period, there are also many people (who still have rectums) that describe a lightning, shooting pain in their rectum during that time as well. I know it's phantom pain, so that might work a bit differently, but maybe it's caused by spasms somewhere in your pelvic floor? I think it's awesome that your openly sharing you experiences, younger you and current you should be proud💜
Brave of her to talk about these issues, I don't know if there's anyone else dealing with similar issues talking about it in this way, probably helps that she's a nurse. Anyway her videos are so informative.
I just said this too! I couldn’t remember the name of the hormone though. I learned about it when I was in labor because of an induction method my midwife recommended.
As Joan Rivers used to say, “Can we talk?” I so appreciate your candor, as many people can learn from your experiences. We wouldn’t be here if we didn’t want to learn from you. Like you said, doctors don’t always tell you everything you need to know about such things and your willingness to discuss it may help someone in need. Bravo! Best wishes to you and thanks for sharing! ❤
Wonderful video about real issues we face and bounce back from on a daily basis. You do make me smile Maggie with your happy attitude and it's infectious ❤. My phantom rectum I decided to rid of once and for all a few days post operative, and asked my body and specifically my rectum to live out what it wanted to say one night whilst I was sleeping and on meds post operative. It was a night of very crazy dreams whilst the nerve endings gave out their phantom messages, and was happy from then on in, in being silent. That worked for me anyway. Many different ways of dealing with such like, and I can fully appreciate the squatting on loo stance works too. Brilliant.
Hi I’m a new subscriber and your channel just turned up on my feed out of nowhere!! It was fate! I have Crohns Disease too and an ileostomy! I have been having Phantom rectal pressure and Bladder spasms for years and no one has been able to find the cause! I had never heard of pelvic floor therapy before but I’m seeing a new GI doctor soon and going to ask about it! The only thing that helps is sitting on the John like you said !! Crazy! It was Fate that I saw you’re video!!💜💜Thank you so much!!
I get something similar on a daily basis...so frustrating. I did want to just mention the iron supplement I use to you, it's called Feosol Complete. All other oral iron supplements make me very sick but this one does not! It came high recommended by other Crohn's/UC patients because its so gentle on the tummy. Just wanted to mention it to you incase your iron pills make you nauseous at all, feeling like that is so miserable. Thanks for all you do for the IBD community Maggie, we love you!
Hey Maggie Don here I know what you mean by animal problems I don’t have a bladder but sometime I thought I have to go to the bathroom to tell Zach hi for me I’m glad he’s with you
I have a rectal stump, nocolon and the spasms are extreme. I do have discharge at times, once it harde Ed and had to have this golf ball sized hardened mucous manually removed during a colonoscopy. Helped big-time. Now have a fistula from rectal stamp to vagina...ugh..discharge from the vagina has stopped so hopefully fistula is healing.
I found the information about the impact on the pelvic floor so informative; thank you. I know what to do now. I think I have neglected this area. Your looking better. Love to Zac. Take care. UK hugs coming over the airwaves.
I’ve got IBD and in August of this year, I had 9” of my colon removed due to a stricture and mass of diseased colon tissue. No ostomy! It took me from Nov. 2019 until this August to be diagnosed! Lame G.I. Doctor. Fired all my doctors, got all new. I am having an inner-stim surgically placed to help my incontinence, both bladder and rectum. They found a lot of Diverticulitis during the surgery. It’s been a long and hard road. No ostomy but I worry if this issue will plague me for the rest of my life! My pelvic floor is horrible! Most days I am weak and tired! Who knows!
I also struggle with keeping food. Try eating your normal meal but in a longer time frame. Kind of like “snack” on it. I eat a meal in sections basically over a span of 3-4 hours instead of in one sitting and it makes a huge difference. Annoying but works for me.
Sounds like you are going in the right direction. Really hard to pinpoint what is or isn't working at times with so many health conditions. I go through the same thing. Also not wanting to take insulin at times (just like not wanting to eat at times) because it is going to make me too low or the food too high. It is crazy. I do not have IBD but IBS. I used to have the fun symptoms you mentioned almost everyday. No doc could diagnose me. I am a lot older and it has calmed down a lot. Some of it was due to stress and high pressure jobs. Grateful I no longer have that stressor any more. On disability due to autonomic nerve damage.. Never know when I will wake up and be dizzy most of the day or when I am getting dehydrated and also I don't sweat. Just mentioning. The opposite of phantom pain. Not recognizing nerve signals because they aren't happening. One day at a time I am doing better. Bless you Maggie. Your attitude and matter of fact way of presenting what you go through really helps me. I have had my main chronic condition T1 diabetes since I was 17. It caused the autonomic dysfunction after having it for 40 years. During the pandamic I started listening to you. I was told once since I have had flare ups of diverticulitis that I could have to have an ostomy soon. However, that was 7 years ago my doc told me that and I haven't had a flare up since. Not sure what I did different, but listening to you I think if I had to have one I would not nearly be as horrified as I used to be about it :) Thanks for listening.
Iron will help your energy level Glad your taking Vitron C works well for me. Sometimes I change out to “Country life Easy Iron “ Best to you always ❤️
Hello Maggie. I just wanted to say that UC definitely made me want to avoid food. I found that about twenty minutes after eating I would feel tense and my colon would start to gurgle and rumble, I also worried that I would suddenly need the bathroom. This would continue for some time and when my digestive system finally relaxed it was time to eat again! Thankfully I have been in remission for a long time now so this is no longer a problem but I completely understand how you feel about food sometimes. Also I can't be sure but I think that tea can reduce the body's ability to absorb iron so it is best not to take iron supplements within half an hour of drinking tea. I suggest you do some research on this as it may only be a problem with black tea. Take care and sending best wishes from the UK.
I get phantom rectum pain every so often too. It does not feel good at all. It's so interesting how we both tend to get it around our periods. I sit on the toilet too! "Pushing" seems to help relieve the spasms. I hope you're feeling better now.
The struggle with food mentioned around 12 minutes in is essentially my entire life, no one gets how eating more and what you eat simply doesn’t matter when your GI doesn’t work. I’m 35 and have been belching around the clock/suffering from constant indigestion since I was 15, No GI specialist or doctor has really figured out why or diagnosed a root cause. Physical activity makes me belch, indigestion/food makes me belch, even while doing nothing air builds up all the time and I have to belch, it just never ends. I haven’t been able to have any stability in my life whatsoever socially or with work. I’ve thought about getting rid of the colon a bunch of times but never seem to have it as an option with my doctors. I was around 130 lbs at 15 and been around 110 ever since, doesn't matter how much or what I eat.
This is sooooo frustrating Maggie totally relate 💜 I have problems sleeping too I don't sleep all night some nights I get out of bed and do something else hope you feel better soon Maggie💜
Did you ever think of a warm bath instead of sitting on the toilet? Maybe the warm water might be better than a heating pad simply because of the wet heat. I know you can swim so a bath might be o.k., at least a sitz bath. Maybe it would relax the whole area? It's just a thought and might work. It's like pain in a removed limb. If you can divert the signal to the brain it might diminish sooner. You are probably right about the pelvic floor exercises. Gee, I hope you feel better. You have had a lot of hassle lately and you deserve a long break.
What about using a doughnut pillow (like they give you when you break your tailbone)? The concept of sitting on the toilet without having to constantly get up.
I completely agree with you Maggie, I also never had a good relationship with food and lately even more so. It feels useless to eat and few minutes later everything is just gushing out, was placed on. loparemide, but do not want to take it every day. All of the best Maggie, hugs to you, Zak and your furbabies. 😍❤️❤️❤️❤️
Maggie - have you considered some of your symptoms you describe could be pudendal neuralgia from so many surgeries ? Do some reading on it, bc there are blocks they can do that really help if so .
I kept meaning to tell you that I bought a vibrating heating pad on Amazon and it's a life changer. It helps the air vibrate up or out and you can use it with or without heat. I would have killed for this after my surgery. I hope it helps you and others.
Maggie I understand your relationship with food. I have an ileostomy and I am not absorbing a lot. I also am getting dehydrated. So my doctor's say eat more and drink more. But if I drink too much I don't have room for food. When I eat I don't have a lot of room for drinking. I feel so so tired and sick and just want to eat and drink what I can. Not always having to force food or drink. So I get it. So sad that you have to go through this. Big hugs and many blessings to you
Hey Maggie Long time no talk...but I have been following you !!! Fathom rectum yes it exist...I get it when I am bloated...sit on toilet and it's gone...lol I think I will pass gas and nothing happens!!! I have been so tired lately and guess what my ferritin is low...so another iv off iron now!!! Even vitamins don't digest in my small colon!!! Take care you sweet person you!!!
I was having issues with dehydration all the time even thou I drank sufficient amounts of fluid. This doctor at emergency told me to put a pinch of sea salt in my water, amazingly enough it's been helping. Keep on being you Maggie, I'm sorry your not feeling the best.
Sorry Maggie that really sucks. I have spina bifida occulta, unfortunately the form that caused issues and had a tethered spinal cord which I had surgery on a few years ago. I have issues ranging from neurogenic bladder (retention), nerve damage, neurogenic bowel and endometriosis. You make a great point about the pelvic floor, and everything in that area is so close that one thing affects another affects another... Can make it very difficult at times to figure what causes what and what is a side effect... All the best for your future health!
Sorry that’s frustrating! I got pelvic floor therapy because I was sometimes getting rectal spasms after orgasim talk about frustrating! I should start doing the exercises again too!
You amaze me with your frank presentation of a topic that would make most people squirm. This may be an off colour comment, but the, "Phantom Menace" sounds like a B horror movie. You're great Maggie.
Hoping for more improvements. I used spinach iron from a national health food store. That's all it was and called. You are a nurse, so you already know B12 helps absorb iron and VitD. My D level was rock bottom and seemed to promote more absorption issues and GI blues. Learned I should talk to someone about that dialator. There are beads I tried that actually helped inserting an hour every other day. Not comfortable though. Take care of yourself.
have you thought about TPM liquid nourishment ? is that an option for you … maybe to supplement your low food intake and it may add more weight …? just a thought … hope you feel better Maggie … thanks for sharing …
As for the iron supplements, I’ve heard they can be notorious for causing constipation, so maybe that for you is becoming beneficial considering you’re having issues with loose output 🤔
Hi Maggie , I been having health problems. I kniw about rectum spasms. Horrible pain. I usually sit in warm water. I use a heating pad. I take muscle relaxers. Yes I cry. I feel for you. Hope your sinis infection gets better soon . I just got over one and it took lot of antibiotics to get rid of it.
Hi Maggie, since you mentioned your phantom rectum acts up around your period, that actually makes sense...the hormone that stimulates your uterus to cramp also stimulates muscles in the "neighbourhood" (that's why period diarrhea is a thing). I know you don't have the colon, but it's possible either your surrounding muscles or your brain is affected by the hormone. Also, glad the iron is helping and not harming! Wrecked my stomach on iron salts until I discovered a plant-based iron I could tolerate, which I could talk long term (Ferrous Bisglycinate...Webber Naturals makes a really affordable one that also has vit c, folate and B12).
Hello and I have had the stomach issue were I feel much better when I don't eat as well .I understand that you need to eat to stay healthy and alive but it's a real battle as with my chron's I can't have dairy or wheat as my body shuts down and I am sick for a week or so I don't have a bag but I know the feeling you get .like you said you feel offal when you eat and it just doesn't stay with you .I hope you feel better soon and get on the right track for you !!! Thank you for sharing and take care. Rest if need to ....
I have a history of painful rectal spasms that are connected to a weak pelvic floor (which is also connected to overactive bladder issues). Mine were caused by sexual activity, bowel movements and menstruating. I’d be curled up in a ball of pain, freaking my husband out. I’m better now, perhaps due to being in menopause?? Who knows) and yes…pelvic floor PT is amazing! But alas, I need to go back for the bladder stuff.
"I have a weird relationship with food." The history of my life since I was teenager. I keep changing my diet to control my GI issues and I hate it. I am always craving food that I cannot eat.
Hey Maggie 😊 I have gut issues. I recently found that a RU-vidr I have just started following has a second channel from years ago that outlines her struggles with gut issues. Well I have watched her journey and decided to order, through her link, the product that has helped her the most. I am sure you already know about this product, but I have to say that it has helped me sooooo much! Her name is Jeanne Martin and her old channel name is “A Gut Feeling” I bought the chews to begin with to see if it might help my sick gut. I started low and slow, and I have to say that after 2 weeks I do see improvement. I am just letting my body get use to the chews. Jeannine says in one of her videos to start low and slow. The company that she chose even sent me more information in the mail after ordering from Jeannine 😮🙌🏻👏🏻🎇
I actually am a rectal cancer pt w/out a rectum. While undergoing chemotherapy I had an ileostomy. I actually have phantom pain from where I had the ostomy have since had an ostomy reversal. I also experience rectal spasms and there is medication you can take. Check with your GI…Hyoscyamine. Worth an ask 😊
I had colorectal cancer. I have an ostomy forever. I have constant pain in colon and rectum. I leak from rectum and stoma. Most food goes through me quickly. Doctors don't have any answers. Can you recommend any medicines over the counter and prescriptions for this problem? Thank you.
Phantom bowel pain. That sounds painful. I take anti-gas med thats otc. I'm super sick so I know how you feel. My heart goes out to you and I will pray for you 🙏 ❤ Let us know how the barn is going.
I had a TAC w/IRA. I starting having them out of the blue about 3 months post-op-- they were so intense and painful. Girl, I showed up at my surgeon's office like nah this ain't gonna work. He prescribed me 540 Levsin. 🤣 What's bad is when you aren't getting the "I gotta go" sensations and you put too much emphasis on one word, cough, sneeze etc and well.. you know 😳 Granted, that may just be me-- I have nerve damage which caused all of my GI issues.
I’m so sorry your body is so difficult to live in. I wish l could hug you when you’re having a bad time. Have you tried acupuncture? Not the local person, but an elderly Chinese specialist? It sounds like your whole system needs help. Maybe you could drink Athletic Greens and give up a couple of meals a day? Your trials and reporting them is your life’s purpose. You deserve so much respect and admiration. Love and healing hugs from Australia.🌈🐨🦋💕
People dont get it when u choose "not eating but feeling ok", over "eating like everyone else but feeling like nobody can understand"... i can only eat once a day and once i eat, the day is over, if u get what i mean 🤐. * i hope u feel better soon sweetie ❣
Hello Maggie I am a 54 year old man and I had the last piece of colon and rectum removed in 2018 and I get cramping and lots of phantom pain which can drive you crazy
Phantom rectal spasms 100% are real. Heating pad between my legs is my first attempt. If I still have the pain I hop into a extra hot bath in a squatting position for as long as I need. I also have someone assist in acupressure on my sacrum. I do as much possible w/out meds but a cyclobenzaprine really takes my "broken butt" pain away. As far as not wanting to eat it's totally understandable. I can go for yrs at a time only consuming 1 Spiru-tein shake w/rice milk and 1/2 Pedialyte, and water PRN a day.......nothing else. Absorption feels and looks nonexistent when my bag looks just like what I ate. I mean how much nutrition am I getting if the food comes out looking the same. Best of luck. I am a female so I can relate to the period stuff. Asher is actually my grandson. :)
Thank you for the helpful tip ! I had phantom rectum problems,also. I am not sure how many times. I have an ileostomy ,also. I also had blockage. I didn’t know it could happen,since I have a stoma! I had surgery in2001 ! I am 75yo! I may have a portion of rectum. Not sure.
I have recently been diagnosed with IBD. It’s comforting to know what it is but seems like this illness is so unique to each individual. I’ve frequently suffered with dry mouth and often get oral thrush - am I the only one who experiences this? Unsure if linked to IBD or not.
I wonder if the phantom rectum cramps has to do with the hormone that’s released during menstruation. Because typically that hormone causes cramps in both uterus and rectum. Women who have “period poops” know what I mean!
I had that eat more thing going on when I was pregnant with my second son...crohns was outta control and I weighed 84 lbs at 5 mos pregnant and this gi kept sending me home to eat and just gain a lb or 2 and I just couldn't. He decided it was best to terminate my pregnancy. I said hell no and walked out. My I eternal med Dr put me in hospital put in an Infusaport and tpn'd me til I could eat. He weighed 4 and a half lbs but was fine. I had a tubal 2 mos later and a hysterectomy at 38 and crohns settled down after that. People who haven't had it have no idea how hard eating is!
I have an ileostomy and most of my colon and my rectum. I never have any discharge. I know that sounds unusual, but that’s just how it is in my case. What I do have, though, are rectal spasms - quite often, actually. I find them very painful and I still go to the toilet and press, even though nothing will come out. I just can’t help it. Any tips?
I agree that eating should be fun. Dr Zach Bush says we should not label ourselves as vegetarian or carnivore or anything else and that we should eat what we enjoy for eating is not just about nutrition it is also about the experience.
Before my hysterectomy little over 9 years ago, I’d often have my IBS flare up big time when having period cramps because my cramping uterus would trigger my intestines. While you don’t have your colon and rectum, maybe there’s something left in there related to that area that your uterus could be triggering? Any muscles or nerves related to the butt area that is left behind when you have the surgery? Just me thinking out loud here
I know mirror therapy can be helpful for phantom pain when it involves a limb...since that isn't your case that likely wouldn't be helpful. The best you can do is ride it out most likely BUT... Since your missing part of your body thats "suppose to" be there im wondering if somatic experiencing therapy might be something that could be helpful? It's something you can definitely look into! The reason I go there is because being trained in trauma recovery I know retraining the brain doesn't do anything for trauma which this type of thing would be. Your gonna drive yourself nuts "retaining you brain"! Because it likely wont help.
I get that kind of feeling like I have to pee but then only pee a little as I'm trying to fall asleep. I don't know if it's mostly anxiety of having to pee when I am almost asleep, or having irritable bladder syndrome. But I can only imagine how obnoxious it would be for you.
I have phantom rectal spasms still after 3 years been sewn up I get them at random times but when I do its in the afternoon/evening time and I'm like body just stop this I don't it but sometimes its will last several mins and yes sometimes I just go and sit on the toilet for a few mins it eases I bit but they are still there god knows how long I will get them for.
