Rectocele or Prolapse: Seeking Advice

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Delia

Hi there ladies....

Anyone with a rectocele or prolapse that haven't let go of their colon yet?

If so, how do you know it's time to quit ignoring it? I think I feel it now, pain is a whole new level all the way up the hip, to the right of the ostomy, and up the lower back. There's a little black and blue.

My stoma is also swollen and has been even though I've been on liquids for 2 weeks.

I have severe medical PTSD and refuse to go unless I know it's something I can fix myself at this point.

Is this normal and can I fix myself with no pain meds (I live on capsicum cream) or do I have to go somewhere and if so, suggestions on how to explain so I get in and out quickly.

Thanks and sorry for the TMI or length. I'm rarely this vulnerable, but I'm scared because I can tell it's not going away and making bladder worse.

CrappyColon

Hey, I am headed out to my niece's birthday party so I can't take the time to fully respond but I could tell how upsetting this makes you, so I wanted you to know you've been seen/heard. Feel free to message me anytime. I do have some thoughts on this from when I still had my colon. Do you have a good colorectal surgeon and/or motility specialist? I did have the rectocele issues but the radiologist was saying one thing, whoever in colorectal that looked at the results back then I'm thinking it was 2019 wasn't going to do anything so I left and went to the competing university hospital essentially next door and found a wonderful pelvic floor obgyn.

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Delia

Nope! Moved here less than 2 years ago because of bad surgeries and slowly finding my people. I found my gastro for my gastroparesis and gastric neurostimulator, some motility, but hard to get in to see him. I can call the office though. I haven't found colorectal because I'm avoiding. That surgery went wrong and they sewed up the wrong side and I had corrective surgery. It took a month for my guts to wake up and we were starting to prepare for them not. When we discussed removing, I had a date and canceled.

eefyjig

I don't have your situation but I feel for you. PTSD can prevent us from taking care of something that needs attention. I've been there. I ignored the month-long bleeding into my bag, just didn't want to/couldn't deal and hoped it would miraculously go away. I wound up passing out and spending a lot of July 2019 in the hospital. All I can say is try to have confidence in your current medical people and understand that your prior medical ones made mistakes but your new ones won't. I'm so sorry for what you went through. I know you're scared and in pain but having it looked at makes sense. I'm sure you'll get helpful advice here.

Delia

Thank you... I've been working so hard on managing my PTSD, but since this specific problem really set off the worst two years of life and change its entire course, I know my limits. I had a procedure go wrong recently and I was awake so it kicked up my panic attacks already and started messing with my arrhythmia so I'm already at capacity on what I can let myself feel today. If that makes sense. I just want to hear from people like me that I have to address it or I won't go. A doctor won't get me there, my husband won't... my old pharmacist was the one I trusted and he passed away a few months ago.

 
Living with Your Ostomy | Hollister
Delia
Reply to eefyjig

Sorry for my novel

Beth22

Hi there,

I also have PTSD from all my medical. I completely understand where you're coming from and I too have had horrible doctors and experiences. I went for almost 20 years and had shitty doctors not being able to find out what was wrong, and I would change doctors because of their lack of listening and not paying attention. My first surgeon for my ileo created it 2 weeks after I had a complication, and he left me in the hospital for 4 days and left me there, didn't come back, didn't do anything so I left. What I can tell you is, and I know it's scary and hard, but not every doctor is the same. You will have to dig a bit to find a good one, but don't give up. Especially when it comes to your health, or you end up way worse in the ER and you have a doctor you don't even know touch you or perform an emergency surgery. Don't let the past doctor or doctors ruin your chances for your health and happiness.

CrappyColon
Reply to Delia

I wish you lived a little closer to me.... I have 3 doctors who I think would be helpful to you and the Digestive Disease Department at Cleveland Clinic has psychologists specially trained to work with people that fall under the digestive disease umbrella. Are you close to a university/research/teaching hospital? I have PTSD from medical trauma as well - non-digestive disease related mostly. I had almost died right after the birth of my first child then fast forward about 7 years... I was supposed to be sedated for a 2-part procedure. They were trying to place a vena cava filter and also a catheter type thing in my leg so I could spend 24 hours on EKOS in the ICU to break up a good portion of a 2 ft blood clot (like who gets a 2 ft blood clot?). The problem was I didn't sedate and they had given me enough fentanyl for a 300 lb guy and couldn't give me anything else for my safety, but a nurse meaning well said, while trying to calm me, "breathe like you're in labor about to have a baby." I was flying off the table and they were holding me down and the cardiovascular thoracic surgeon had to call it after they placed the filter. He said in the over 800 times he's done that procedure he's never had a patient respond like me. I felt super special... I remember staring him down after they had left me to rest in hopes I'd calm down, but I said to him, "You see how I'm still not sedated?" So now they put me under general anesthesia for almost every procedure. AND then to top it off when I went and saw a new cardiovascular doctor at CC, he told me they would NOT have done half of what they did to me at the local hospital. AND the surgeon I had at the local hospital's nickname is "the butcher." Rotten luck. I have to drive by his office almost every day. I used to get so angry whenever I saw it, but more life experiences have taught me that holding onto the anger is not worth it.
I know you said you avoided colorectal... I have a surgeon who I think is one of the best female colorectal surgeons. So if you ever want to visit Cleveland, I feel blessed to have been able to get an appointment with her because she was brand new to CC at the time. She listens to you talk about your life as well and not just what needs or doesn't need to be operated on and the nurses love her which speaks volumes to me. AND, I think this part is very important hence the caps, I was told by the nurses she is one of the few surgeons to jump in to help women when these issues are clearly affecting their quality of life. Whereas a lot of the (male) colorectal surgeons only want the cancer, severe colitis/Crohn's cases. I've had good male/female doctors/surgeons so I'm not trying to be gender biased but at least in the surgeon's department she sticks out as one ready to help a lot of women who haven't received the care they need up to that point.

Starting with what are the things you NEED to do to take care of yourself.... what can I help you with? I find it easiest to tackle one medical issue at a time if possible. You're in a new place, I think you have an opportunity to start fresh with a whole new medical team. From the issues you listed it sounds like you need a good colorectal surgeon that also specializes in pelvic floor issues and/or a pelvic floor OBGYN, and a motility specialist (trying to remember what you said in your original post because I can only see the comment I'm replying to right now). Did you have a specific type of neuro as well? I'll leave it here for now, but I want you to know you are capable of doing the hard things, and you can absolutely do them while afraid. With the support system you have, what would make the existing team more helpful?

Jodie

anyark

Pain is a red flag and it's telling you something is wrong. Time to see your doctor. Don't wait around, thinking it might go away. Wishing you the best, anyark

JustGigi1967
Reply to anyark

Thank you, I needed to hear that pain is a red flag and means I need to see my provider. My nurse is on holiday for the rest of the week. That's the only reason I reached out to my hospital team.

Delia

I appreciate the support. I did reach out to every doctor and only heard back from one because of the holiday. It wasn't my doctor, but the on-call who said she felt bad but couldn't help. I went to the ER and they confirmed what I suspected and also treated me exactly how I expected. Dosed and discharged. I came home knowing my issues were confirmed, with rashes from the medication, and with more pain and nausea. Oh, and super triggered. I called the next day and no doctor called back. Today, I got a message that let's just say made me see red. I now have shit in order, but I feel like it takes me crying and past my threshold to get help. That truly disgusts me. Oh and because I've been to Mayo the ER idiots literally say I've read through your chart and say so you have a feeding tube. No. I've had 7 or 8. I lost count and that was before TPN and Mayo was 4 or 5 years ago. Happens every single time and it's not relevant.

My photos on my profile. That's who I was before my body no longer felt safe. I was sick, but still felt like I was stronger than all this. I've been told on several occasions that my facial expressions don't match up. I don't give anything away. I'm no longer expressive. If I explained what caused the PTSD, maybe people would back off but I feel like when you live in constant pain you can only cry and yell so much. You can only care enough to smile so much, too. It's not that I'm depressed or not happy. I'm in pain and trying to control it. My face can only accommodate so many demands people. I have to worry about my heart issues, BP issues, pins and needles... I can't allow it. I live in it and my face won't show how much I'm hurting every time so they assume I'm okay. I refuse to put on a show. So, I get discharged until I'm basically dead and you should have come in sooner talk where I tell them I was here 2 weeks ago. No, not every place is the same. I get that. I do have some great doctors I've recently started working with but for over a decade I fought so hard for myself and was destroyed. Now, I just want peace. That's why this sucks. I'm not looking to coordinate this or that anymore. I want out of that world and was getting closer to it. I educated myself enough to know what I can handle, but this just really sucks. Also, I shouldn't text when I'm still raging about doctors. My apologies. It's not you, it's definitely me.

CrappyColon
Reply to Delia

My pup Mali would be some good therapy right now (she's the sweetest when she's sleeping otherwise she's all about chasing squirrels).

Get it out, girl. Don't keep it inside. Have you ever seen someone specifically for the PTSD? PTSD, regardless of the cause, is no joke. My PTSD was triggered back in March - can't remember why other than the anniversary of finding out there was nothing left to do for my crappy colon. I have to wrap up in a blanket like a burrito (when I do it myself, it's funny to watch I'm sure) or one of my rescue dogs will lay on top of me - dogs can sense so much. I know I have to take a step back from everything when it happens, sometimes it can take my mind/body a week to reset.

Beth22

The worst part about all of this is that it does truly suck and you feel alone like no one is listening while you are suffering in pain and just want help and someone to believe you. I completely understand exactly where you are coming from and I am really sorry that you have to go through this. I have been there several times myself and for over 17 years I couldn't go to the bathroom for 3 weeks at a time and I had taken every laxative known to man on every diet, cut out 95 percent of food. I was in constant pain, looked like I was 4-6 months pregnant, and I was literally full of crap. I had over 15 doctors tell me I was fine, nothing was wrong with me, and try giving me another pill or laxative even though I had literally brought in a list of everything I have done and tried and was allergic to. I had one doctor (a motility specialist) tell me to suck it up, get over it, people are worse off than you. Unfortunately, I have very many stories and events like this and same as you, ER visits and sent home. And every last one was wrong; my colon didn't move and I had to have it completely removed. I have pelvic floor dysfunction which causes me to have my Ileostomy, along with gastroparesis, GERD, gastritis, and a hiatal hernia. I tell you this because I don't want you to feel alone or give up. It is one of the hardest things to deal with when you know there's an issue and doctors won't listen or do anything about it. Best advice: don't give up and continue to advocate for yourself, you know your body better than any doctor would. Try and find a colorectal surgeon, if that one doesn't listen, go to the next and so on until you find one that hears you and your concerns.

Delia
Reply to Beth22

Thank you! Yes! Yes, I think this one just triggers me more because they screwed up my first ileostomy surgery and wouldn't listen to me until I started projectile vomiting poop poltergeist style. Enjoy that visual. They never acknowledged their mistake of sewing the wrong side and it took a month for my guts to wake up. I don't ask for much... transparency and to have them believe me. Apparently those are like asking for unicorn poop. Everything you mentioned I have, too, so I know you know exactly what I'm talking about... and yes, I had one surgeon ask me to smile for him. He said I couldn't possibly be sick because my teeth look too nice. He didn't bother reviewing my records or the tests I was just forced to repeat by the gastro. I do have great looking front teeth. I also have a tongue that is swollen every day that has my teeth imprints and no one can figure out what I'm allergic to either. I also went home that same month and had 11 cavities and thrush because I'd been in the hospital shitting out of my mouth. At least I have pretty teeth though.

I hate going. Of course I have a therapist and manage my PTSD. If I didn't, I would have never gone. I just hate when I'm constantly disappointed by how bad it is and I'm still getting more test results coming through showing more that at this point is just making me laugh.

Delia
Reply to CrappyColon

Yes, I have a fantastic therapist and two beautiful dogs that have never left my side. One knows I'm sick before I do and I try to push her away because I want one more day of not being sick, but she knows. She comes and plops herself right where the pain is and soothes me.

The other is a complete asshole! I love him! It's always his way and on his terms, but late at night when I am in pain crying and everyone is asleep, he's up and watching over me. When I fall, he's the first at my side. He's incredibly protective... but don't tell him you know!

Sorry, I sound like I've never dealt with my PTSD. I have been working incredibly hard and have so many measures in place, but triggers happen. I had a procedure 2 weeks ago - a nerve block and they put epinephrine in and I have an arrhythmia. Apparently, I'm part of the small percentage who can't have epinephrine. Now, I know. I was awake, but couldn't ask for help and barely got out a noise. I could hear the fear in the doctor's voice, I felt them yank the long needles out, rip off the prep. He was ordering them to get the monitors on me now. I can usually get my heart to calm myself on my own because I have chronic sinus tachycardia so I know how it feels to run a marathon all day long, but this time I couldn't coordinate the beats. I felt myself... I don't know. I'll leave it there. My body wasn't my own. I also could hear their fear and I couldn't move. It triggered a past trauma.

People respond differently to trauma. It's almost impossible to sedate me now unless it's full and you use a lot. I wake up back in that bad place and fighting. I always explain in advance and we always make plans, but we have yet to desensitize my body.

If I step foot in a healthcare facility, hypervigilance kicks up. I have my self-soothing tools, but it also depends on the provider and environment. I used sound-blocking headphones now because my sensory issues are insane.

Since I was getting nerve blocks, my nervous system was alert and that is part of my illness. When that rollercoaster arrhythmia started, my sympathetic nervous system learned a new pathway and has been giving me crazy arrhythmia moments since. I'm scheduled to see someone, yes, but until then I'm getting non-stop panic attacks when I'm not sitting still. All my medical team is aware. I pushed my body too hard to avoid those constant attacks that meds and alternative options were not keeping away and I pushed too hard. Now, I'm paying in other ways. I know what got me here.

I'm a smart, educated, resourceful advocate for myself. I just thought this was the one place I was allowed to share without someone asking me if I had a therapist. I normally don't share anything because no one understands. Sorry, but that didn't help when I'm really in it right now. I understand the intention behind it, but I was very much just venting to a support group that I thought deals with the same situations. I wasn't looking for recommendations. I can Venmo a $35 copay, if necessary.

Beth22
Reply to Delia

It's like you literally want to take them by the shoulder and shake some sense into them like uh hello do you have wax build up in your ears ok let me yell at you then lol... A little.over a month ago I had to have a Ileostomy revision was my 4 th (a whole other story of why, my body is stupid and it is my body's fault for constant retractions) I am always in a 1 of off the wall never seen before problems and like you allergic reactions to everything . But my doctor who is good did the revision and surgi itself went good and then my stoma wouldn't wake up(which has never happened) well it was easter weekend and my doctor was off for the weekend so he left specific instructions for the doctor that was on call in the hospital, he brought everything up to my room that was for the doctor on call in the case my stoma still wouldn't move and my doctor told me his plan and told me only sips of liquid since I just started to feel a little discomfort. Later that night I was in horrible pain my gut felt like it want to explode and I was crying in so much pain, paged the nurse the doctor on call said give her a gas x, which I can't take nurse paged him several times through the night because of pain and he ignored them, next day the doc on call comes in and he straight up says he wasn't going to do my doctor's orders, and to eat solid food, I said that's not what my doctor wants and he wants a cath he says nope not doing it walks out.(my doctor had a catheter and want my stoma cathed so my output could come out) so 2 more days go and I ended on the hospital floor screaming in pain and throwing up , nurses paged the doc on call and not.once did he come in check on me, do a CT or anything he left me on the floor . I asked for them to call my doctor I knew he was off but knew my doctor wouldn't be happy they tried to get his number but the doctor on call said I could but I am not going to he will be mad. I called for the head of the hospital, I tried getting a supervisor and every other person higher I could to get help and just even call my doctor to see what he wanted to do and nothing.So I had to wait sitting like that for days till.my doctor came in on Monday and I told him everything he wasn't happy at all.. and my doctor got it moving with a cath in 20 mins and I was up walking around the hospital. I will say over 90 of doctors are ass holesand have no business treating patients, and they are lazy and don't want to take the time to actually workand they put everyone in a box treating theres systems the same and when you are outside the box they have no idea what to do and they don't want to . it took me over 17 years to find the one I have now. That experience kicked up my PTSD really bad . I know it's hard but use that PTSD fuel into bad ass not gonna happen today mode when you go to a hospital and doctor . If you can't take or do something say nope I can't do that you have to find another way and I know you can. Like with meds you can't take or allergic to or something your not comfortable with. Speak it girl you know you and your body. Lol most places don't like me because I don't take bull shit and since I can't take certain things I won't and then they like the nurse practitioner that came to my room got pissed because I straight up told her point a to z of what I know to do and not to do and was more knowledgeable then she was on what I needed to do hahaha .. sorry this is a long post.

CrappyColon
Reply to Delia

Uh no. Slow your roll please.
I asked because I've been in therapy at different times for medical and other PTSD, I'm a huge advocate for people getting the help they need, whatever that is. I sure hope going to therapy for PTSD isn't insulting- I've had therapists who made things worse so even in that dept. it's not perfect.
If you just are venting that's great, and if you need to let some steam off my way, go for it, but maybe hold up a sign that says 'vent happening here' and remember who you're really upset at? ;Sarcasm is great but no need to bite off heads

Your dogs are both really cute. Isn't it crazy how intuitive they can be?

Delia
Reply to Beth22

I hate that you went through all that and yes, my experience was similar until they finally did a test and had the oh shit moment and there was scurrying from the room. The fellow came into my room and explained what they did wrong and apologized so much. He then said they would come in about 10 min to take me to surgery to fix it. The surgeon walked in and saw his drawing and I never saw that fellow again. He was the only one who acknowledged something was wrong or apologized. I'm not an awful person and I just want the truth about what's happening to my body.

I'm so glad you advocated for yourself, even if you were fighting against a screwed up system.

Trust me, I do the freeze thing. I'm the most controlled (unless coming off anesthesia or a freak incident) so most don't realize the level of my panic. I do it because I am scared and want to get the hell out of there, but the moment I leave my body starts the shakes and all that follows.

I do advocate for myself and won't let a doctor leave until I ask my questions, but I can't force answers.

I'm doing my best.

Delia
Reply to CrappyColon

I actually think my role is at a perfect rate... not too slow and not too fast. I get nauseated so I'd rather not make a lot of sudden changes.

I also very much believe in therapy so it's nice to know we're on the same page. I've never said or implied that it was insulting to go to therapy for my PTSD. I would never say that for any reason if you were to ask me that question, as well. If you read my message back, I said I have a fantastic therapist so I obviously don't hide my feelings about therapy and even shared more about what I do. What disappointed me was that when speaking with a person with no chronic conditions, that is a phrase that gets my fake smile and where I kindly end things because I am not ignorant to the fact that you can't live well with PTSD without help. Of course it was the first measure I took. You can also read my message and see where I said, I understood your intention. You were trying to offer a recommendation, but sometimes people just need others to hear them and I naively thought this was a safe place for that. From now on, I know I can be a listener and supporter. I no longer feel safe opening up if I'm going to need sign posts. In my original post, I put help because I was trying to build up the courage to go to be seen. In that follow-up update, I was angry at the fact that I did exactly what I was supposed to and was failed again. I even said something about this is towards the doctors.

I'm not using unkind words towards you. Yes, I am upset with the experience I am going through, but your response actually did upset me, as well, if you'd like me to be brutally honest. I've also not seen a single other thread here where someone had to hold up a "vent sign" but I've read a lot of venting and support. I also did not come close to biting your head off. I can promise that. That would not count as a mini meal and I have gastroparesis and so it sounds hard to digest. Also, I haven't been able to eat in about a week now. Your head doesn't sound appetizing. Yes, I use humor because I'd rather do that than cut someone deep with words when I know I'm good at it and that person also suffers like I do. I'm not in the business of causing additional pain.

I was just being honest with you that I didn't need to hear that. I should be allowed to say that without someone telling me to slow my roll, telling me I might think therapy is insulting, to hold up a vent sign, or that I am biting their head off. If I am supposed to tell a doctor I'm not okay with something, how is that different here?

Please know I'm not trying to be unkind but you are very defensive so may I ask if possibly you have a reason that it bothers you if someone tells you something they are not okay with or is it the therapy thing itself?

And... yes, my dogs are cute just like your dog! That is, until they fart and I can't move fast enough.

Beth22
Reply to Delia

I can see by your posts that you are fighting for yourself and doing the best you can. I truly wasn't meaning it as you weren't. It was a "you got this" thing and I know the feeling of going through it all and still pushing yourself against what is going on is hard. At times, you want to say "screw it." I just don't want you to say "screw it" (not that you will, but some do). I am sorry you have to go through it. If you ever need to talk or anything, I'm a listening ear... or well, reading and writing, I guess you would say on here, lol.

Delia
Reply to Beth22

Thank you!! Sorry if I'm coming off like I didn't appreciate your words. I absolutely do. I totally connected. I'm tired and hurting, lost 16lbs in less than 2 weeks, and I'm crawling to the bathroom. They put me on the wrong antibiotic and now I have to start over. Plus, 3 more specialists. I knew this was coming, I was just wanting more time. I'm just looking for people like me who get how all-consuming this is and especially when it's tied to other conditions that doctors can't figure out. I don't quit. I say it because I really want to, but I have way too much left to see. I just want to quit being in the system. It doesn't feel like it helps. That's what I mean when I say quit or want to give up. I just want freedom.

debbinmiller
Reply to Delia

Bless your heart. I wish I could give you a big hug!! My dog "baby" is great too when I'm sick or sad. They do know! When I'm crying, she always comes and licks my tears away. Some would say because of the salt or whatever in my tears, I don't care what "they' say! I can see by the look in her eyes and the gentleness in her kisses she knows I'm hurting. The folks on this website are great! They genuinely care and empathize with you and your feelings. We're all here to listen.

Jayne
Reply to CrappyColon

Yes, be focused and targeting. Do not be fobbed off with partial advice.

I do not know whether it is similar in the States, but here in the UK, it is not unusual to have a second, even a third opinion if necessary - always ask questions ......

And, if it is difficult for you to ask questions - perhaps write down all your positive and negative thoughts and maybe take a friend with you to the consultation?

I appreciate that shyness and embarrassment are real issues - but feel empowered to ask for help.

Bless you biggly

Best wishes

Jayne

PS just seen capitals - sorry, I am not the best at keying or spelling - but felt the urge to respond.