Facing My Ileostomy Reversal - A Journey of Resilience

As soon as I finished posting this, of course, they came in and removed the tube. Therapy was right behind them, and they had a device to stand me up. They put a diaper on me, and all the liquid came pouring out, but I was able to stand up and sit down. I thought the tube was going to be so long, but it was really short. I didn't even feel it when it came out, and they put a clean diaper on me, and I feel good. I had somebody help me pack my bags, and I said I wanted the Depends, but she packed my period pads instead. So tomorrow, I'll get the right stuff, and I can get out of the diaper. The shocking pain is gone. Like I said, it's annoying today, and I'm able to move around pretty well. I keep telling them not to let me go back to the rehab, and I think they're listening.

The butt burn started. I came prepared, so I have the barrier cream and I also have the hemorrhoid wipes. Oh my God, it's awful still. They told me I should be home Tuesday. I had pasta and meat and bread, and before that a tuna fish sandwich for my first solid meals since Saturday. Everything went through very fast.

I know the feeling. Being crippled and learning how to walk again is tough. I also agree nursing homes and hospital food sucks. I hope you are feeling well.

You may also consider Hydrocortisone or Zinc Oxide. I'm allergic to zinc oxide, yet steroids can be prescribed.

J, it sounds like you are in fighting form and ready to kick some butt. Keep advocating for yourself. You're already doing better than I was post-reversal surgery 😃

Words of Encouragement from Ostomy Advocates I Hollister

Last night was very rough. I had white noodles with some Parmesan cheese and lean steak, I think it was beef. I have a friend with problems and he cannot eat beef, and I thought, well maybe this is a bad idea, but I did it and I don't think it was a great idea. I've been pooping every two hours since 9 PM, maybe every three hours, and it burns but not always so bad. However, I thought it would just be my butt that would be burning, but my vagina is also burning, which is surprising but I should've suspected it, and I am using a cream, the 3M barrier cream, but I don't think they're applying it well and I'm surprised that they don't know what a low residue diet is. If I say low fiber, that's what they understand. But I'm on a colorectal floor. I also had a little argument with the nurse because when she was cleaning me with the hard white towel, I was screaming, "It's burning. It's burning," and she was like, "I'm not doing anything. It's water." I'm missing most of my colon and the acid is burning me. She says there's no acid, it's water. I said the acid is my stomach acid and she proceeded to show me the towel full of shit and tell me this is not acid. I explained to her the acid is in there, but I'm so tired. I told her it's not her fault. I told her she's not doing something wrong. I told her I signed up for this, but it's very painful. Also, Colin had said that all bowel movement that requires the use of the muscles is very taxing, to say the least. I mean, my muscles are in so much pain, they're exhausted. I feel like I worked out for 10 hours because I have to push. I asked for this, I know I did. I know it's going to get better. I asked for prayers. She also decided to remove the PureWick. She said it was too full of shit and not soaking up the pee, but it was soaking up some pee and I don't think I have the catheter put back in. I didn't feel strong enough to stand up to get into my chair yesterday to use the bathroom. I will try for today, but I'm exhausted. I feel like I've been beaten down. I know it will get better.

Oh dear - caring thoughts are with you. Your suffering makes me hurt - hoping each day will improve for you. Your comments bring back some similar excrucious days of recovery and many on here can relate. Hang tough - better days are ahead - sending huge hugs! jb

My thoughts are with you. I hope today is a better day for you. Keep the positive thought that it will get better. Hugs

At this point, I'm just suffering. I wish I had taken Iggy's advice not to get it. I thought, since there are a number of people with no colon and they are functioning, maybe I made a mistake. It's been a few days, but it's horrible.

J, sorry things have been rough the past couple of days. Stop thinking like you asked for the pain… who asks for pain? All you wanted to do was try a reversal to see if you can get back to your former way of doing things. And you're trying it… and it's not your favorite thing that you've ever tried, but I think you are showing those nurses what a strong woman you are.

..Now, Jules...it seems you just have good days and bad. And many of us probably thought "this was a bad idea," or "I think I made a mistake" when we had our surgery, too. It's normal. You know this. Don't give up. Be the trooper we know you are.

Don't be afraid to ask for pain killers. Don't be afraid to refuse food you think is unwise at this time.

We are here to tell you, you're gonna be alright. Patience.

I have gone over your posts, and it just seems you have to be a bit more patient with the process. I know it must hurt like hell and the frustration overwhelms you.

This, of course, is easy for me to say, being an ileo for 8 years. But I too felt "fudge this," "what have I done?" The Ken Butt surgery I recently had in October sucked. Today, no sucking😁. Took 8 months.

(#$%^/÷÷&$#) But... this is my new normal, worth it...and...

The good folks here were a beacon of hope, just like you are, kiddo... being there, helping with venting, crying, yelling, and giggling...showing their strength enlightened me, hon.

You will get back to your normal. It's never easy. But the payoff will be worth it.

Just an update to say that last night was probably the worst of all the nights. They've tried different things and I've had some reprieve, but last night, up until 2 AM, I was screaming so loud that they told me to stop because I was disturbing the other patients on the floor. They did put me on an anti-diarrhea medication, but that seems to work and I have some reprieve, and I'm pooping every maybe three hours instead of every two, but it builds up I guess, more stronger acid coming out. The doctor said I should say bile instead of acid. So at 4 AM, they come in with an anti-itch lotion. I thought it wasn't going to work, but it's the best thing so far for the burn. Believe it or not, we haven't tried the bedpan maybe once because I haven't had enough control, but I have today and the bedpan helps circulate the air so I sit on there, but they take me off of it because it hurts around where the pressure of the plastic presses my skin. They also increased the anti-diarrhea medicine from 2 mg to 4 mg. I'm hanging in there, but the stoma site seems to be bleeding more so if it's not one thing, it's another. But I'm trying to be strong. A lot of people online are saying, like in the other group I'm in, that the butt burn is two weeks. Oh my gosh, I don't know if I can do two weeks. Some people are saying it's a few months. But there are other people that are saying that with no large colon, there is no burn for them. These are on like Facebook groups. It goes to show how individual we are. I want to say that they are coming in faster to clean me, which is good, but the moment the acid sits on the skin, it's like when it goes around the stoma and like it takes the skin off, you know the feeling, guys, right? My whole downtown region is on fire the moment it touches my skin. I can deal with going every hour if I have to, just the burning is unbearable, that's the part of this. That is what I call extreme suffering. And I don't want anybody to be afraid, I'm not trying to make people afraid, but I do think it was sugarcoated to me that because I have some colon and I had no radiation, it would be better. I wasn't prepared for this, and I don't know really how you could be unless you live it, but I think people should know that the pain can be extreme even without cancer radiation, even if you have some colon. And the lotion has been really a saving grace and I did try the three barrier cream and many products from Coloplast because that's what they have here. They also put me on a generic diaper rash cream. Nothing has worked like this lotion, which has given me some relief, which I thank God for and the doctor.

 

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...Oh snap, Jules. I hear lotions, I hear antibiotics, I heard you were screaming and they just told you to calm down...?? Without any medication? WTF?!!!

You have a right to have meds to control pain and aid you to sleep. I didn't hear anyone doing that for you. Ask. Demand. And yeah, continue screaming. Fudge them all.

Gosh, this sounds so awful. I can't believe this is happening to you there. Is there anyone to act as an advocate? A friend, relative? These people need a smack.

Patient relations has personnel to help you. Require it.

"Keep quiet" isn't "Can I get you something for pain, or to help you sleep?"

Can the burning sensation be controlled with ice packs maybe?

Are they offering you anything, hon?

Please hang in there.

I am so sorry you are suffering so much, honey. God bless you, and my prayers are going up for you. I am glad that the anti-itch lotion is giving you some relief.

I think finally things are under control. They haven't wanted to give me pain medicine because it slows the bowel. Two IVs have failed because my veins are bad. They are supposed to put in another one, but they haven't yet. They give me 4 mg of the diarrhea medicine at 9 AM and then at 5 PM. They gave me another 4 mg. Then I have the lotion and I also have diaper cream too, I guess as a double protector. The fact that I'm able to hold it long enough to ask for the bedpan is a big game changer. The fact that I can go, and it doesn't touch my skin is a big, big blessing. My surgeon is on vacation. I didn't know she would be on vacation, so there are people that I don't really know dealing with me and I don't think that's helping me, and I hope she's going to be back tomorrow. I said some pretty things about my mood and they sent a psychiatrist, and I think it really helped them help me, and I hate to say that, but I think they needed that push. It's hard to realize, I guess, how strong the stomach acid is if you don't experience it, even I guess on this hospital floor where people have stomas. I am very upset. I am going to advocate for myself Monday and fight to get home. But I last went to the bathroom around 3 PM and it's almost 7 PM; that's four hours. And I don't feel any pressure like I need to go down below, knock on wood, so maybe we finally turned the corner here.

I agree with everything you're saying. When my doctor comes back from vacation, I'm going to have a conversation with her. I wish there was something equivalent that they could feel like the bile on their skin, the acid, and then have some compassion because some of them do, but some of them just want to get out of here, especially the nurses' aides because they're not getting paid a lot. It was kind of shocking to be told to stop screaming. I mean, they did say, "I know you're in pain, but can you stop screaming because you're bothering the other patients?" But it's like I'm not doing it by choice, you know. Yes, I'm definitely going to talk to my doctor. I will forever be surprised at the lack of education by the staff on this stuff, and I don't understand it. I don't understand why I'm explaining why I have so much diarrhea and what it is and what the colon does. Also, they keep saying, "You have to get clean because we're helping you," and it's like me screaming has nothing to do with me refusing to be clean. It's just the pain of it is my reaction. There certainly needs to be more education here, and I think my case is very unique because I am in a wheelchair. They didn't feel safe to send me home right away, and I have to have my services set up for my home care, which takes some time. Normally, people go home so fast after they just fart, and here I am, you know, having to deal with them being afraid to put me in my chair. There's definitely a lot of issues, and I'll discuss it with them. I love this group. I love the people here. Again, having the bad compared to this isn't bad, but I had to try the reversal for my own mindset. Plus, I didn't ever come from a place where going to the bathroom was any kind of difficult. So I didn't know anything else; this is my first time experiencing real pain with going through the rear end. Now that I know what it is, certainly the bag feels like a blessing, but again, maybe we've turned the corner. We will see, but I'm glad to have this community, and I'm always grateful for all of you.

J, if it helps them understand, the burn that you feel is similar to what they'd feel if someone ran a potassium line and didn't run it in conjunction with a bag of saline. That feels more like being burned from the inside out, but the burn is similar, just in different places and for different reasons.

I hope you did turn a corner here...about time too! Sometimes you have to go through hell to get your butt home.

All valid reasons they keep you there, especially home care, which can take a half day.

But I think you're on the wrong floor or wrong hospital. The staff needs an enema.

I normally take down names of anyone entering the room, treating me. Nothing like the power of the pen to improve those conditions you were through...go through. And hopefully not, be back at...

There are some people designed to help you like I mentioned a patient relations person.

You make enough noise, someone is gonna come help.

That sucks your doc is on vacation.

You can use that psych doc to an advantage though. He has pull.

Through all of this, others will learn the do's and don'ts. You mentioned that before.

It is an eye-opener for me being my visits equate to 4 - 5 times at the same hospital yearly.

It's our unofficial duty to report, good, bad, the bullshit.

You are spot on and will help others, being so frank about everything.

You got this, kiddo. Be a warrior.

If you can't kick their asses, roll over them like an unwanted speed bump.

Help them? Understand? Fudge that. Ask them to come close and bite them. Problem solved. 🤦‍♂️😲

Tony, sure, try your way and see how it goes 😃

The squeaky wheel gets the oil. In my case? Doing this? They have a special room for me. It's padded.😲😳

They had me on 2 mg of the anti-diarrheal, like I said, twice a day. Then, since yesterday, it's been 4 mg four times a day, and that has solved it, although I'm a little constipated, believe it or not, and there's extreme pain around the stoma site or old stoma site from the pushing. My stomach is so sore. I'm due for pain medicine any minute. The constipation is slight. It's not that bad at all compared to the liquid burning diarrhea. So, I only went last night, but I only ate once yesterday, a very small amount. But still, I feel this is a huge improvement. I have total control to wait for the bedpan, and I had to wait a good five minutes last night, and I could hold it, which is great. That acid burn is still there, and they put the cream on me every few hours, regardless of whether I have a movement. The inflammation has visibly improved, and when they touch it to clean me or put the cream on, I'm not screaming my head off, but I'm just grimacing. I have a friend coming today; hopefully, one of the doctor's assistants is going to teach her how to fill in my stoma because the wound care at home is only coming three times a week for like two weeks, I think. So, the rest of the week, someone has to help me. I don't have the dexterity. So, I'll have my friend be trained to do it once a day. It's an iodine, long, soaked piece of gauze, and they shove it in the hole with tweezers, and it burns. They cover it with gauze and tape, but it's much less burn than the butt one.

Day by day, Jules. 👍

Hello, I am so sorry to hear of your struggles. Thinking of you and praying you get relief, and that things continue to improve every day from here on out!

J, is your surgeon back today? Who is saying the gauze needs to be soaked in iodine first?

Thankfully, you are starting to get some relief. I hope that this will become a distant memory as you continue to improve each day.

G-Day J, I am feeling all of this for you, you poor thing. If you want them to know how the burning feels, hold a cigarette to them. I used to say to my Stoma Nurse it was like a cigarette burn. J, I know it's early to say this, but remember you can always go back to a Stoma like I did. I am sending you a truckload of good vibes your way. Let's get this surgeon to make things better now she's back from vacation. Regards, IGGIE

Hi everyone:

So my surgeon came back today, or yesterday rather, and she actually took the iodine gauze out. So the hole is totally open, just with the cover of the gauze on top and the tape. When I stay at 4 mg of the anti-diarrhea every six hours, it's working for me, but there's a lot of pressure in the rectum and the surgeon is concerned because one thing it could be good because the rectum is expanding, but the other thing is it could be bad because it could be constipation. There is stuff coming out, but not a lot, and last night I slept through the whole night and I was so happy because I got back up to the 4 mg because they put me on 2 mg again and what a bad choice. So I told the surgeon I am so happy on four mg; I slept through the night. She doesn't really like that. She says I need to be going at least five times a day and encouraged me to put it back down, the dosage of the anti-diarrhea when I go home, which is today at 1 PM. Maybe I'll be better at home, which is what I think because I have all the accessibility. I can actually access the bathroom because remember here they have me peeing on myself or peeing in the bedpan if they come in time. She says that if it really hurts the first 10 days in the rectum, that the connection could pop and we're still, I think, on day eight. She says constipation is not good right now and that I do need to keep it liquid, but I deserve to sleep through the night; I've been through hell so you know it's just this pressure in the rectum, but the pressure in the rectum is so much better than the acid. They also switched from Metamucil, which I was taking twice a day, which I hate. They switched from that powder to something called Benefiber; it's clear. You put it in the water; you don't even know it's in the water. Great. Not to be gross, but what comes out is like gel, like Jell-O, so it's not acid liquid at least. She said I might have to take the anti-diarrhea for the rest of my life, but she also said I have a whole rectum left with the foot of sigmoid so I should be fine, but it's going to take time for everything to expand. I have to go see her in two weeks again.

I understand those stoma holes are left open to heal from the inside out. When the surgeon cut out a rectal abscess, he left that open too but used saline on gauze to keep the skin moist as it closed up. Stuffed inside. I've never heard of iodine being used.

But I do think... at least keeping the area moist and covered is safer than nothing.

Glad you are adjusting and it sounds like you are home already.

Being home does help in recovery. Your place. Your rules. Your bed... etc. And if you have someone to help, it means a world of difference.

Keep us posted. You have an audience or fans waiting on you here.

P.S. Not a fan of jello 😆 no worries.

Hi Everyone:

First off, I want to say I'm sorry for not responding here and updating in a while. So, as most of you know, I got my Reversal on 1 July. I still have some days that are very bad with butt burn, but I'm learning to handle it. I don't take the anti-diarrhea med as much as I should.

I feel like since I was given it so early on that I never really found my own natural rhythm, and I'm trying to do that, but sometimes it's to my own detriment. I do feel like it makes me bloated, but it does help. If I don't eat before I go out, I'm OK and I can go out as much as I want without any problems. If I do eat sometimes before I go out, I'll take like five anti-diarrhea medications and I'm good for like two days. Things firm up and are less acidic.

But when I drink a lot more, it helps with the bloating. If I do forget to drink, which I have on busy days, it's like my body shuts down and I get a headache like you can't believe, and I have to go to bed, but I can't sleep because my head hurts so much, so I have to hydrate. That's something that is so important for all of us, reversal or not. Electrolytes, and I knew that when I had the bag and I haven't followed through.

My dog has had some health issues, ironically, enough with her gut as well, so both of us have been having diarrhea, which is a little ironic and funny sometimes.

Usually, when I eat, some things go through very fast, but most of the time it takes six hours, and I feel like in the last couple of days maybe it has improved to like ten hours.

There has been an improvement in the amount of hours I can wait for the bathroom after I eat. I can pretty much do everything I need to do to live life.

But, I would like to explore other medications, and I have an appointment at the end of the month to do that. The acid burn some days can be overwhelming, especially the one time that somebody put spices in my food…way too much spices…and I ate it anyway thinking I could handle it somehow, but I was so wrong and the pain was like back how it was when I was in the hospital. It took about 48 hours to get better.

The soft toilet paper is really important and the bidet. I did have to take antibiotics twice since the reversal because of a toenail infection and that really did mess me up, but I'm back on track and I do feel like I said it's improving. I also think that I've become lactose intolerant somehow or milk is just not a good idea and I don't really like drinking milk but I love cheese and that's very difficult to give up.

I have gained some weight and I'm gonna try to start working out again to lose it.

I was able to take an eight-hour bus ride to visit my friends and I took four of the anti-diarrhea medications every six hours like I did when I was in the hospital and I was able to survive the whole trip without going to the toilet and going back I had no problems also.

 

Although I didn't eat as much as I wanted to on the trip. Hopefully, within a year, everything will get a lot better. I really didn't think I would be doing this well now.

I am forever grateful to this group and continue to refer people here for support. I was very afraid and depressed and you guys helped me a lot. Thank you.

The only thing that is a drag is when it burns when I go. But my control is getting better and better every day. And my scars are doing really well. I really believe in deep tissue massage which I did myself early on because of a comment on some site. A lot of scar tissue gets soft that way and I did it maybe two weeks after the wound closed. I like whipped cocoa butter. It is great to rub on there.

Sending all you guys hugs, and I'll try to be more in touch on here.