Terrified of Upcoming Surgery - Need Sympathy and Comfort

Hi, Red top,

How are you doing? How is the recovery going? Please, if you are up to it, post an update on your progress. I think of you often.

Rosiesmom

That's awesome to hear, Sandy. It makes things much easier when they go the way they're supposed to. Sorry that you're suffering from fatigue...I think that's quite normal considering what you're dealing with. At least it's not nausea. Thanks for the update and stay well. R/Mark

Hi, I am Milton and I had mine done in Jan of this year. I can't tell you that it's not hard at first having a bag on you all the time. But I can tell you that with time, it gets easier. I think I got to go back in for them to work on me again. What a bummer. Just when it was starting to look good. Now they think I may be in 4th stage. I don't know how much more a man can start. I have been fighting hard, but it looks like it's gonna slap me down again. I am a fighter, but never in my life have I had to fight anything close to this. Well, I did not mean to talk about me. But keep your head high and don't you give up. Good luck to you, girl. PS, if you ever need someone just to talk to, I'd love to be of help to anyone I can. 'Cause I am a bag boy and I know how it can be at times. My number is xxx. Good luck.

Hi Milton, I just read your post. I must be on this thread somewhere. You hang in there too. It sounds like you have been through a lot this year as well. Bowel disease is a struggle and all of us here are very familiar with it. Take care and keep fighting for health. I will keep you in my prayers. LH

Thanks, lady. You know, it seems to me that only us, the ones with a bag, really understand and know how one feels. Won't keep you on here, but thanks for your reply. One of the hardest things I had to deal with was not having anyone to talk to that understood. Anyway, takes

Just like to chime in if that's okay. This is precisely how I find it with those that surround me. It's easier to identify with others when we all have the common cold as an example, we then know how each of us feels then. Each person's understanding fits within what can be personally experienced. With Crohn's and the surgeries that lead to an Ostomy, this is something those of us that have gone through this truly understand.

Really appreciate people here that share thoughts and feelings.

Thanks :)

I agree, Lone Wolf. This site is a wonderful place to talk about ostomy life as all of us can relate. Chatting here really helped me through a difficult period in my life. I am very grateful for my meet an ostomate pals. Take care and have a great week. LH

Hi there, LadyHope. Nice to speak again. Ok, let's type again :) And it's true if we all chat with one another, that is the best therapy going, or at least the beginnings to coping with the emotions.

Hello Sandy. I have just sat down to read all the threads on this post from the beginning and wanted to thank you and everyone who responded for your contributions.  It is so good to be able to follow the progress of someone such as yourself over  a period of time tha t spans both pre and post op.  But more important for me is the way that relationships begin and blossom on a site such as this. We all know the process is a beneficial one but this particular thread of posts highlight just how good!  Best wishes to you all. Bill 

Hi Sandy! It is now 4 months since your ostomy surgery. Can you let us know how you are getting on? I would love to find out that everything is going well and you are adjusting OK.

Just started reading this site and saw your post. I too, have the bag for life. How are you doing?

I am doing fine now as far as the bag is concerned....got refitted with a concave format and it works like a charm. I really have to remember to empty it!!

As far as FAP - it is always a challenge with so many parts and pieces gone....glad to be part of research as long as I can. How are you? I spend as much time as I can on HOSPICE, quilting, and gardening (daughter made me some waist-high areas but I still like to do the flower beds on my knees!

Up until two years ago, I had a 3-acre garden. I sold at farmer's market. You wouldn't believe how some people know so little about veggies. I had a lot of fun. Not enough energy now, but I try to walk every day.

I do what I can -- puttering!! The sheep and donkeys are in the pasture during the summer. Along with the grandkids, new chickens are going into a hen house (former playhouse) in a week or two. I am enjoying the farm once again. The children (8 and 10) currently live in the UK. They visited here for a week, so we started some plants and bought baby chicks -- Hannah and Liam plan to come for the month of August. They enjoy the local fair and enter a few things. Hannah has started quilting and Liam loves gardening.

I just got a call from DHMC today to schedule tests on all the partial organs that I have left ... checking for tumor growth, so going in June 14 -- FAP is what it is. I hope the tumor growths can eventually be stopped in the years ahead-- some of the new tumor research looks promising. One daughter and her son have it from me - the other daughter and 2 children are free of it.

I cannot walk for long stretches because it uses up so much energy and I cannot possibly process enough food to replace it, but I do get out and enjoy each day. I probably get a mile a day underfoot but in small doses.

Have a wonderful day and thank you so much for writing!

Hi Sandy...wow, your story sounds almost identical to mine! I agree...the chemotherapy was easy compared to the radiation...I had 30 treatments and then surgery. I also had reconstruction and a hysterectomy along with the resection. My surgery was in October 2014 and I can honestly say that yes...it's a loss...life is very different but my life is almost completely back to the way it was! I'm also very active and can do everything I did before...if I don't choose to share it then nobody even knows I wear a bag...I'm also considering irrigation but have not yet. Right now it's scary, I know...so many uncertainties and fears but you WILL have your life back and I think you, like me, will move forward with your life and back to enjoying your GRANDS! If you have any questions at all, feel free to ask...as you know...these types of discussions can be very graphic...I never thought I would be discussing my poop with strangers...many blessings to you!

How are you doing now?

Hi Honest Abe... I wasn't sure if you were asking Sandy how she was or me.. haha. If you were asking me, I'm doing great... very blessed.. I hope you are too! :)

Yep, asking about you. I have never met a person with an ostomy. I have no problem talking about mine. Received good news about my blood work from the oncologist yesterday. Everything normal.

That's wonderful! There is nothing better than receiving the news that all is well :) This forum is great for support and most everyone is willing to share their experience. So happy to hear you're doing well! Blessings...CH

Hi.. It's me again... July makes a year since my surgery... I have gone back reading all the responses from all you wonderful people.. And I want to thank each one of you for all the support and concern!!! I guess physically I am doing okay... But really, I think I have just been in denial about all of this... Reality sunk in about 4 weeks ago, and depression has set in.. :( ; I do have an appointment on Tuesday to try and get something for it. I haven't been on anything, I'm really scared to be on anything... I figure I want to give my body time to recover from all it has been through..... And usually with anything I am on, I get every side effect listed!! I do not tolerate any meds very well... With pain meds, and just about anything else, I have to take Phenergan because I will usually throw up if I don't.... But I think the time has come to be medicated.. And I do have a question... I am supposed to be having a colonoscopy on July 25... And I'm NOT looking forward to it... In fact, once again, I'm terrified! When I went to see the surgery doctor, I did have questions, but once in the room, all I could do was cry.. He just sat there until I finally stopped, all he said was now, be here for the 25th..... He's not there for anything else, just to schedule the colonoscopy... One of the things I wanted to ask.... Do these bags come any bigger?? I'm scared that when I drink the 'stuff', and it starts working, will my bag overflow?? And since my rectum was removed because of the cancer, I assume they will go through my stoma... Will it hurt? Will they put me to sleep?? I'm NOT looking forward to this...

Hello Redtop. Thanks for your post as it raises some interesting questions. I have never had a colonoscopy so cannot help with that aspect but I look forward to seeig other people's answers. I was not sure from your post whether the medication you are contemplating was for issues connected directly with your stoma or whether they were for your depression. If they are for your depression, I would offer a word of warning in that many of these psychotropic medications have side effects that turn out to be worse that the condition  itself. The psychiatric profession tends to be in denial about the so-called side effects and will prescibe even more drugs to conteract the effects of the first batch.

My take on this medication is that the term 'side- effects' is a misnomer in that these 'effects' are the direct result of the medication. They are well known and documented and are definitely not a side issue. Most medical trials for psychotropic medication have indicated that palacebos are very often  at least as effective as the drugs they would like you to take. Drug companies try to hide or diminish these sorts of statistics because it is not in their financial interests to have people finding their own cures for things like depression. I would draw your attention particulary to those drugs that have been shown to alter the depression towards suicidal tendencies. Of course, if people commit suicide then their depression is de facto 'cured'. However, this 'cure' has to be questionable. 

Bags come in many different sizes and you can ask for samples of large bags from any of the manufacturers who will be happy to send you samples.

If you want a really massive bag then I would suggest an irrigation sleeve folded in half and pegged at the top. I use one every night and they are more than capable of carrying any output you are likely to have. The only real problem with them is that they don't have air filters, so if there is any output, the smell tends to seep out.

I hope your procedure goes well

Best wishes

Bill

Hi Redtop. Please forgive me for reading this stuff from the last post toward the first. First, I agree with what Bill said and then would like to expound a little and in no particular order.

The colonoscopy through the stoma is not a big deal. They'll anesthetize as needed and probably use a pediatric scope. During the prep you'll dump your bag as necessary and it should be easier than with a rectum. You'll be comfortable and don't spend a second worrying.

As for the depression, I think we should be told that we'll probably experience some as a result of the trauma we went through. Maybe they don't want to scare us any more than they think necessary. You are wise to acknowledge your need for some help. Hey, we're different now and if we allowed ourselves to really understand what was happening to our bodies we could easily have cracked. I think most of us are way stronger than we ever thought and those, like you, who recognize their emotional, psychological needs are stronger yet.

However you choose to handle your situation, I think you'll be just fine, then really good. I've been there, thought the shrink was a moron and his prescribed meds sucked. I just became so angry I decided I needed to get better by myself and just reading about and listening to other people's experiences.

I think your surgeon could've and should've been way more compassionate but that's just my opinion. Hopefully he's a great surgeon.

Lots of folks here are way more knowledgeable and you'll get good advice.

Respectfully,

Mike

Hi Redtop,

If what you have gone through has just begun to sink in just four weeks ago, it's okay. Everyone is different in so many ways. The thing I think that's important is that it sunk in. Now you can figure out how you are going to look at yourself. Once you realize that you are basically the same person now that you were before, then you know you'll be okay.

Convince yourself, you can handle it. One day at a time. One hour at a time if that's what it takes. Yes, there are bad times and bad days, but there are also good days and good times when everything works and there are no issues.

iMags is right, the colonoscopy is more of a discomfort than anything with possibly some nausea and bloating. Besides, why worry before you have a reason to, it just causes more stress. Think of things that ease your mind and picture yourself how you want to be.

Best wishes

Thank you all for the advice....but Mrs. A...I have to laugh at your comment, why worry before I have a reason...I am the type of person that when calling one of my kids, if they don't answer, I automatically think they are hurt, in a ditch somewhere, crying for me!! Yes, my mind always goes to the worst-case scenario....and trust me, it's not that easy to stop thinking like that...lol...guess I was born a worrier! And iMacG5...thank you also, and yes...the surgeon was a d**k....no compassion at all....but I guess that one good thing about that hospital...you always see a different doctor each time you go....but you know, I really get tired of explaining every time I go!!!! And yes, I think you are right about the doctors not wanting to scare us...I really wasn't told too much at all....it was like, first, 'you are ok, it was just a small cancer growth, but we got it all', to 15 minutes later, 'sorry, but it IS cancer, and you will have chemo, radiation, surgery, a colostomy bag for LIFE and then more chemo'....then go home and wait for an appointment at the cancer clinic! And I waited for 1 1/2 months for an appointment....but hey...with a lot of fears and tears, I got through that....I thought I was strong...lol...but now it seems reality has set in...the beach used to be my happy place....but until I figure out how to safely get in water, it is now a very depressing place ;( ;I have NEVER been one that liked to take any meds...shoot, not even for headaches...I figure my body has been through too much crap this past year! But yes, I have realized that I need some help! I have a counselor, sweet sweet lady, and I have found a family doctor, and I love her to pieces...soooooo compassionate!! She has started me on a very low dose of antidepressant, that will also help with the neuropathy and said to come back if anything felt out of place!! My next appointment with her is in 4 weeks....yes..this whole thing has taken a toll on me...I am not, nor will I ever be the same person I started out to be.....but with all the kind words here, and knowing I'm not alone, really really helps!! Thank you all soooooo much!! Now, I pray the meds work! So far so good..no major headaches like the Zoloft gave me....maybe I'm on the right road now..........

I can relate to you. I have been through chemo, surgery, etc. I lost my spouse 3 months ago and had to drive myself to the ER for blood clots and 5 days in the hospital with no visitors. It has been rough, but it improves. Try to walk some every day. It helps me. God bless.

Well, bless your heart Honestabe! And now I feel like crap for complaining...but I guess that's a good thing...lately I find myself shutting out my people here..I know I am blessed to have them! As for you driving yourself to ER, if you have Medicaid, they will fix you up with a ride,...if you don't, then maybe contact your senior center and see if they could maybe help you find a way...I'm so sorry for the loss of your spouse :( and I hate that you have to go it alone now :( ;yes, I imagine it has been rough for you! You sound like a 'strong' man...people tell me that I'm strong....but I really don't think so.....you just do what ya gotta do...right?? You don't have to like it, but ya gotta do it!!

Hi everyone, I haven't been on this site for a week or so because I have been so busy and tired. I wanted to respond to this post saying that this is a lonely, frightening journey at times. Things have happened to us that we never expected or even knew could happen from a medical perspective. For me, it is the ileostomy, barbie butt, and monitoring dehydration as well as all of the fallout from my UC. UC, the gift that keeps on giving... lol. I've gone to more docs in the last three years than I ever have in my entire life. Saying that, we are here for each other. We may not be next-door neighbors, but we are meet an ostomate neighbors and friends. It is comforting to know that I am not alone and blessed that God led me to this site. Have a nice weekend....it is hot here in PA. LadyHope

Hi Redtop....Please know you are not alone....as you can see all of us here have some form of experience with the same questions, fears, and wonders you have.....

1st you will be active again it just takes time healing is slow....as for eating we all have our opinions on that as we all tolerate and process and definitely differ in outputs etc it is definitely one of the hardest things to nail down you will experiment with foods and be told repeatedly chew chew chew and chew some more and remember water is your friend...as far as clothes again at 1st loose fit for comfort there are many secrets to camouflage your bag when you are ready.....smells will depend on what you eat but again many hacks to diminish the odors.....as for attaching ask and learn as much as you can many of us have tips and tricks and most have played with different products finding what works for us....you should be assigned an ostomy nurse you can turn to for questions and answers and of course we are all here....most been there done that....stay strong and carry on hun....please keep us posted....you got this....

Happy Saturday

Your friend Homie with a Stomie

Tracy