Dealing with Post-Reversal Challenges: Seeking Support and Answers

After I had my bag taken off, I thought things would be good, but I found that I can have loose bowels. The doctor said to take anti-diarrheal pills three times a day. If I don't do that, then I will have loose bowels and that is a problem. These pills are over-the-counter type... It is hard if you're out somewhere to get to a bathroom quick enough, so I pretty much stay home where I feel safe... I am a homebody anyway, and then with the virus going around, I have no need to get out that much except for food, doctor's appointments, etc... But I find it sad that my life is altered in this way, and God only knows it has affected everyone in one way or another...

I had my operations on December 17, 2017, and four months later, I had the bag removed... Anyway, a disappointment is what I am getting at. I kept asking the doctor and nurse when will this stop, and they didn't really want to answer that question. The nurse said, "Well, it could take up to 1 year or 2 years..." but the point being is they didn't give me a straight answer... How I solved this is don't eat... If I have an appointment somewhere, I just don't eat... People I know said, "You shouldn't do that, not good for you..." Well, obviously they have no idea. I feel I can't even go to dinner with friends or lunch without having fear, barely get home in time... But it wouldn't be a secure thing if you eat. Anxiety!

Anyway, lately I am now realizing that this is just it... I feel I am so lost and far from the ordeal I went through... Most of my circle of friends really have no idea how I really feel... It isn't something you want to sit around and chat about. So this is why this site caught my eye... To learn from others and we have things in common... How you all deal with things... I have had a hard time navigating along to ask even a simple question in the past outside of this site... My wish for deciding to join this community is knowledge, friendships, and a possible connection to someone very special... That we can all relate. I want a better understanding of things I didn't get from the doctor, nurses... A big gap in there of feeling lost and felt like my life is over. I truly don't believe it is over, I just need answers... I am a strong person but want the best for the last part of my life. So ahead I go to learn... Thank you...

I've considered the reversal, and after reading this, my doctor hit it on the head!

She said I'm probably not a good candidate for the procedure and I might be better off leaving "well enough, alone."

It must be very difficult for you to deal with in more ways than one, isn't it?

Ugh.

My heart goes out to you!

Rocky

Thank you Rocky, you're my first response....I had a problem with the bag, it kept leaking the whole time even when I was in the hospital and then had to go to a rest home for a short time...this is so weird. I have always been healthy, eating right, exercising.....so this was a shock to me...but I had all the faith in the world but this whole procedure was a nightmare....so now I say to myself, okay you're alive and be thankful which I am.....I was chained to my house pre-operation and after....I don't know but with the shorter intestine things run through faster....I had nurses who couldn't even get the bag on so it wouldn't leak and I was thinking why me....but I am lucky I am alive to type this email...I am a happy person....as my Dad would have said if he were alive, he would say if it ain't broken leave it alone....When in the hospital they told me I needed to start learning how to put the bag on but I was so weak and was shaking a lot...lost so much weight....everyone has their story...I remember at night I could feel the bag filling up and would get this little itch around the stoma....for me I couldn't live with this so when my doctor said are you ready to get the bag off and I said heck yes.....

I'm so glad for you that you have had no problems where this works for you...I love to hear stories...this is a great site to learn...I thank you for sharing with me and others....sounds like you had a good doctor....I know things could be worse and that makes me so appreciative that I am alive and learning how to navigate through all of this.....have a wonderful evening..... 

Sorry to hear that your reversal hasn't turned out to be a good experience. It sounds like you didn't have a stoma nurse if they couldn't fit the bag properly when you had the ostomy, a good WOCN is essential when having this surgery as they can help mentally as well as physically in getting your head around the whole thing.

Have noted that most people who have posted about their reversals on here usually leave the site shortly after, probably thinking that they have no need for it anymore, which is a shame because I'm sure there are many people who are interested in what the outcome could be, good, bad or otherwise (like yourself).

I have a permanent ileo so can't offer advice, I do know that having a bag forever (for me) means freedom from pain, drugs, constant doctor visits and with the added bonus of never being chained to the bathroom again.

I hope someone chimes in that has had a reversal and can be more helpful.

Hi, Just Me - and welcome to this site! I'm glad you found us. :)

I'm sorry that you have endured so much and still have no satisfying resolution to your GI issue(s). It's frustrating when even the medical professionals don't have any answers, I know.

I had Ulcerative Colitis for 9 years before my (permanent) ileostomy surgeries, and I'm familiar with taking loperamide hydrochloride to reduce the "loose bowels". It is lousy to be home-bound because you need to be close to a bathroom to avoid embarrassing "accidents". Sometimes, even being homebound, I wasn't able to make it to the bathroom in time. It was more than a little humiliating and downright scary. Ultimately, my colon was so ravaged by the U.C. that it wouldn't work at all, and even the loperamide HCl didn't help at that point.

What led to your ostomy surgery, and what kind of ostomy did you have?

Lily17

Hi Just Me,

I read a different post before I read this one. Sorry, should have looked down the list first! Anyway, I am really glad you have found this site. There are people here that have been through or are continuing to go through what you are. I have a permanent colostomy from cancer, but it was horrible to begin with and my ostomy nurse was useless. I had to figure it out on my own. Once I got the right products that worked well for me, it was all uphill from there. I was given horrible pouches by that ostomy nurse. They don't always know because most have not walked in our shoes.
I know you still have issues and if you don't feel your doctor has addressed these to your satisfaction, I would seek another opinion. Seems there may be something causing your pain. It may be something you have to live with, but I would certainly want to know.
It is no fun feeling like a prisoner in your home. We have all felt that way at some time, I think.
Good luck,

Puppyluv

Oh, thank you so much for the reply....I love this that I can hear other people's stories...you just never know or you can relate to.....You're right about getting the right product....in for a doctor's visit, his nurse put a new bag on before I left, and it was the best one of all and wondered why I finally find one that is great and was due to have the operation for reversal....it sure would have been so much easier with the right equipment... nbsp

It is bad enough with this COVID staying at home and with the current situation, but I do try and stay positive and thankful for all my blessings....I value your input....makes me feel better. Have a good weekend.....stay safe....:)

Thank you so much for stopping by and replying to me.....and the welcome....I am so glad I made the decision to join....I had a perforated intestine....they had to take out quite a bit so things go through me fast....So taking the diarrhea pills three times a day does help and on different occasions I would think ok maybe I don't need to take them anymore and as soon as I try it, it goes back to the loose bowels....so taking those and not eating if I have to go out is my only way of coping with this....I need to get in to another doctor to see if there is something stronger...my surgeon never told me that I would have to deal with this the rest of my life.....Was going to say it depends on some things I eat or drink.....but it is never the same no specific thing....don't get it but work with what I have. nbsp

Thanks for telling me about what you have had to endure...I do know that it can be different for different people...no two are the same...It is a good thing I am retired so I can stay home. From out of the surgery and the bag situation no one ever could keep one on me without leaking and all.....I was scheduled for the fitting for the bag....and the day I went in for surgery my feet were swollen so they had to cancel my surgery....so as time went on the marking on my body started to come off and they said don't worry ...well guess that is why you get a fitting because the doc just guessed and think that is where all of that started....I had people in the hospital all work on me to get one to not leak, even followed me into the nursing home....I was in there for a couple of months and in the middle of the night the bag starts to leak and you would be amazed how all the nurses had trouble and I thought how am I going to put one on myself if the nurses can't even do it...through this whole thing I went to hell and back many times and I would pray to God all the time...things would go good and then next day something else....

Through this whole ordeal I lost my faith in the medical field....I could write a book....but I am not....don't want to dwell on it....I will say when I started to notice problems with myself I would go in to the doctor and tell him my symptoms and tried to get help and felt like I was just pushed aside...I was having to go to the bathroom every 5 to 10 minutes constantly all day and night....I would tell him all of this....went through this for a long time until one day I get a call from the doctor's office and he said pack a bag and get to a hospital asap....you need emergency surgery.....anyway with the perforated intestine my intestines were surrounded with bacteria.....and I am lucky to be alive today...it was horrible....septic....had that...

Ok so I am thinking I will be fine after this operation...and I would ask questions about how long will I have to deal with the diarrhea and all...never could get a straight answer from my surgeon and nurse....so have had to wing it. nbsp; So this is something I guess I have to live with, still chained to the house...I was going down the street to get some food and boom I get the feeling I am going to have an accident pushed the cart back and got in my car and rushed home about 3 miles...and just made it to the toilet...people I know don't really have any idea of what I deal with...I think people may even think I am using this as an excuse....Ok no more about me.....I will figure out this and with the nice help on here.....I say thank you for taking the time to read this....just haven't had anyone around that understands this situation until this site....I am so thankful... Have a wonderful day...I will settle down here...ha ha