Seeking Advice for Ongoing Stoma and Health Issues

Hi all, this is my second attempt at writing this blog. Well, here goes; I hope it is not too long! I have had my stoma since 2006. My bowel perforated and I was alone and way out in the country, hours away from emergency hospitals. My partner went to Sydney the day before. I rang 000 (emergency), unlocked the front door, and woke up days later in HDU. I thought I was dead until I saw all the tubes, etc. I was told I had diverticulitis and there was no way it could be reversed as it would happen all over again. I died twice, I was told. I had the best surgeon in the country and he saved me when I should have died. I need for you to know this as it is important in what I will be asking for help. I was still a very sick person and was not out of the woods. Okay, next, after I went back to the country, I was so not happy with this bag sitting on my tummy, but I learned to like it as it was keeping me alive and I had finally accepted it. Not for long, as I got what I learned later to be a hernia and was traveling for hours to and from the city, as I could not keep a bag on and if it stayed on for any length of time, I got a very bad odor; all this was 24/7. My Stoma Sister was off her face and she was hours away. My surgeon finally booked me in for a mesh repair. That was September 2008. I got home and not long after, I was getting a massive amount of pain just like when it first happened, was rushed to the city and was operated on again as my bowel was strangling because it broke out of the mesh. I went home and in a couple of days, there was another emergency dash to operate again as it broke out again. So, he repaired it and then put it all in a cage??? (Don't know what it is called). I now live very close to the hospital, am living by myself as I can't live with anyone re odor, etc. Now it has burst the banks again and my doctor said he has to operate but can't do it where it is; he has to move the lot. My problem now is I have bad days and not too bad ones. The doctor will not operate as I have put on a lot of weight; I am very depressed. I had a total knee construction last year and had to fight for my life again as I got two massive clots on both my lungs from that operation. I am also booked in to have the other knee done and I am so scared. My surgeon said he will operate if it is a life or death situation or I lose weight and get down to 80 kgs. I have good days and really bad ones. I totally understand where he is coming from because it is going to be a massive operation; he wants to give me a better chance. His words, so I am scared.

Has anyone ever had this or similar as I am so scared I won't make it this time around! My stoma is inverted and it is in a crater like a damn volcano :)

Thank you for reading this and maybe some advice would be greatly appreciated.

Hey Mooza, help please

Hello waytogo.Your story sounds horrific and I cannot say that mine compares in any way with it. From what you say it seems that your physical problems are largely in the hands of the medical profession so there is little you can do about it on your own. However, the fear and associated psychological problems are a natural and 'normal' response to this type of adversity and there are things that you can do to help alleviate that sort of worry. You have already made at least one small step in the right direction by asking for help and advice.The problems are clearly yours and the potential solutions will lie within yourself. But often there are people who can assist in the process of adjustment. Sometimes these will be people who have had the same or similar experiences and it would be great if you can make contact with such people. If not, there are psychologists who specialise in post traumatic affects and they might be able to suggest some ways forward for you on the psychological front in dealing with the angst that these sort of circumstances create.I do hope that you find the help and support that you seek. Best wishes Bill

Hi Bill, thank you for your response. I was going to ask my GP if there was anything I should do. I hide my feelings as I think I am weak in not being able to cope, but apparently, I can't keep it a secret anymore. I feel as if I am drowning. waytogo

Afternoon, WayToGo... Oh, you do have your problems. Bill has good advice for you, asking for help. I have had my share of problems, but you have a huge concern. It sounds like you must lose weight to help keep the stoma in... I know mine keeps falling out due to 40 years of steroids... muscles are shot. They did tell me to watch my weight as that will push it out! Please try and hang in there!!! I know it is not easy... see someone you can talk to, and try to lose some weight; this will help some. I wish I could tell you there is a magic fairy, but there isn't. God bless and good luck, Spade.

Thanks, Spade, for taking the time to help me. I know what you mean when you say you have no muscle and the weight is of no good whatsoever. Sounds like you have had your problems as well, and I am thinking 40 years of them. How long have you had a bag? Wow, steroids are a heavy-duty thing to be on and for 40 years?? I was put on Warfarin after the clots to keep my blood thin. That is the big concern for my doctors, and that is why I am so damn scared. My son came and fixed my treadmill, so I have no excuses now to get on it and go for a marathon walk, lol :) I use a walker to get around due to my knees, so it is going to be hard. Thanks again, Spade. Way to go, xx :)

How to Stay Hydrated with an Ostomy with Collin | Hollister

You dear girl waytogo. I am so sorry you are scared, and I am saddened that you think that you cannot live with anyone because of your stoma, etc. I cannot give you much advice about your situation (knees, etc., and your weight regarding your operation) except that if it is a life-or-death situation, life is always preferable, and life can be so sweet even when things look so black. I have had my ileostomy since 1999 and have had many ups and downs, including a month's stay in a psychiatric unit last year due to deep depression, and I plummeted down to 5 stone 2 (about 33 kilos, I think - math is not my strong point) and was so weak I couldn't walk, but I got through it, and you know what - life is worth living. I cannot believe I almost ended it all because I had so many medical problems and getting epilepsy on top of everything else seemed to be the last straw. I am on my own - but not really!! I have a lovely family who I'm so sad to say I worried terribly, and I have 2 wonderful rescue mutts who are my constant and loyal companions. I am so sorry I nearly left them all, and I would have made them so sad, and I feel guilty about that. I don't know what to say to make you feel better, and I just want to quickly transport from Scotland to Aussie to give you a big hug and will you to go on. Take time to stop and look at things - the stars, trees, birds, children playing. Listen to the sounds all around and believe in yourself. Shut off the news and anything that is depressing and about which you can do nothing, don't even buy a newspaper. Will yourself to be strong, and you will feel a little stronger (easy to say the words, I know). Your mind is all-important, and being positive can win you through. I don't believe in God in the conventional way, but I believe in the power of the mind, so my thoughts are winging their way to you, and I sincerely wish you all the best. I don't just wish to hear you get through this - I will hear that you do. All the very best, dear x x

Hi Diz, thanks for your comments, and you did already help by taking the time to read my blog and all your suggestions. I am and have taken it on board and am mulling all of it in my mind. Normally, I can use my mind to control a lot of what is going on with my health, etc., but recently I have not been able to get my head into gear. I think the thought of having a stroke or something horrid like that. Wow, I am so sorry to hear all of the things you have had to go through as they are much more than I have to go through. I got your hugs and it feels so good to talk to people who have similar problems and who have a bag etc. This is the first time I have opened up with people who have a bag. I already am getting my head around what I have to do, so thanks so much for your concerns for me, Diz. I wish we could meet up, lol. Would love a big hug. I will keep you posted. I am starting today to get this weight off. I am getting on the treadmill today. Thank you so much for helping, and I am so surprised that after I wrote this blog, the comments could help so much. Tytyty Diz, when I lived in the country, I used to take a lot of pics (before knee probs) of sunsets and flowers, etc. It took my mind off a lot of my probs as I loved the outdoors. Thanks again, Diz. Way to go, xx :)

Good morning, WayTo Go... I hope today is a better day for you. You had asked me how long I have had a colostomy... 10/7/11 was my first surgery for colostomy, then 12/12/11 I lost half a lung, then from coughing the bowel prolapsed, so I had another surgery on the colostomy 2/1/12. Learning to live with it, it does get easier... it is all in the mind how we handle the situation. You are going to be fine, we are tough ladies. Watch the knees on the treadmill!!! You might talk to your doctor first, there might be another way to get you moving, to lose some pounds. Do get outside even if it is just sitting on the front porch. Again, hang in there!!!!! Spade

My friend was in the exact same situation as you are. She had to lose weight, or no operation. I also had a hernia repaired. My ostomy has been in 3 different spots. I wear maternity jeans, which are actually more fashionable than stretch pants, to keep mine from leaking, as this time, my ostomy is up higher. I was at a small weight of 110 lbs, and then was diagnosed with hypothyroidism also. I weigh 150 now, and can't lose weight for anything. It isn't easy, but self-talk, or finding a buddy to walk with you would be great! We are all here to cheer you on/up when you need it. Think of all the things you'll be able to do when the weight is gone. Life will be better, easier, less painful! Love and hugs to you!

Hi Spade, thanks for your comments. With all your comments, I am seeing that there are ostomates who have had, or have had, a worse life of operations. I know we all own our own problems, but it is sure helpful talking and reading about all of what you all have had to go through. I am so in awe of you, Spade, as to go through what you have had to endure, and you have such a great outlook. So thanks for all the suggestions, and I will take them on board :) x WayToGo x

Hi Chellebean, I am so sorry for all of your ordeals that you have had to go through, and you too have come through the adversities you had to face. Your mind must be very strong. I have used my mind in other areas of my life, so I know I can do it. I sure can see that I can come through what I have to go through. How does your stoma work being up high? Where about is it? What is hypothyroidism? I will also Google it to be able to understand what you have to endure. It sounds like because of this that you have put on weight. When I get my knee done, I should be able to go walk about, lol. Thanks also for being here for me as that also helps me. Hugs and love right back x :) Waytogo x

Dear Friend, you are not as alone as you may believe - the helping hand of the many understanding friends here has saved a lot of us. I will be praying for you, praising God that you are fearfully and wonderfully made. I have bad knees as well and have put on some pounds since the ileostomy. I take Advil for the knee pain a lot and try to move about soon after I take it. The pounds are hard to shed indeed! Keep fighting!

Hi notexpectingthis, I have been helped in my mind so much already with all of your comments, and you are all right when you say to talk on here as all these people do help. Wow, I didn't know just how much it has already done for me. Thank you for your prayers, notex, lol. I hope you don't mind me shortening your name :). I am on a load of pain meds as well as others to get me through the days. Thanks again for your words of advice and your prayers, and I too will pray for you. Big hugs being sent x :) waytogo

Your story just breaks my heart. You have been through so much...I can only imagine how you have suffered! But I can tell you from experience that losing some weight will make a huge difference in your life, not just physically, but mentally as well. If only it were easier to accomplish!! My cervical cancer returned after completing radiation so I was told the only other option is to remove everything. Now I have 2 bags, a colostomy and urostomy (actually I have 3 bags but I'm getting rid of the alcoholic husband:-) After I recovered I started eating healthy, lost some weight and feel better than before...healthy and active. My heart goes out to you as I wish you all the strength and courage you can muster to keep up the fight. I know you have it in you!

Hi nal143, thank you so much for your comments and advice, which will be taken on board. I am getting closer to losing weight than I have ever been, as I got my groceries delivered so I can't get items of self-destruction. :) I have been making an effort to get on the treadmill, but wow, it kills my bad knee. I will do it a little at a time for the next few days, so maybe I will get used to a bit of extra pain. Ouch! :) I will think of you all and your well wishes, and it will make me do it. Thank you so much, nal143. Wow, I am so sorry for what you have had to endure; it is so much more than me, and I don't know how you are getting on with life as it is. I know we all have suffered along with our families, and talking to them about what we are dealing with is not the same as with you all; we understand so much of what one has to deal with. I had to smile regarding you saying about 2 bags and then the 3rd one is your hubby. Sorry. Thanks again, nal, very much appreciated. I will weigh myself, then try to get seriously walking. Thinking of you all and what you all deal with will spur me on, so thanks all for your help and advice. :) Way to go! x x :)

Hi, your puppy is adorable. It seems you have gone through a really rough time. And being told you need to lose weight to get your surgery can't be easy. It takes motivation. I hope you get to your goal weight and get your surgery. Best wishes. Keep us updated. And again... that puppy is so cute!

hi DH sorry I took so long in replying to your comment. thank you so much and yes I have been through a lot but hey there are a lot of ppl worse off than me, and this is why I think I can get down to my weight goal as it helps me to think about how silly I can be at times. every one has their own probs and are owned by them, so I am, and all others have to deal with them. Hey I am a lot better after finally writing my blog as it has helped me come to terms more now than before as I felt so isolated. I have a great family but they don't know what or how I cope if I do lol and they too know this and are so glad I have finally written on here for the support I needed. Thanks to you all I have lost a little bit of weight still not enough but I have just today gotten a letter from the Hospital with my final forms to fill out for my total knee construction and when that is done I will be driving around the country side (not too far away lol) I will be a regular visitor to our gorgeous Beaches to take some pics and that is even closer to the Hosp LOL :)So all is getting a lot easier thanks to you all and thanks a million to all your support that you have given me :):) thanks again :) waytogo

Morning Waytogo...just saw your message. I am so glad you're coming around. Hopefully, when your knees are fixed, you will be running down the street. Keep us informed on how you make out. Remember, just take each day as it comes.
Spade

Thanks, Spade. Yes, I am running up a smaller hill thanks to you all. :) I will keep you all informed, and I hope you too are good. I have lost 6 kg over the last 2 weeks, and now that I have started, I will keep it up. :) Thanks again for your ongoing support. Way to go!

Well, hi to all of you! I am having my knee replacement done on the 16th of January. Yeah, I am still scared, but I will be having the injections this time around and will expect a better outcome (please, Lord). Thanks to you all, I have been doing a lot of thinking and have come to terms, I suppose you would say, with my life and that I am alive and that I have people who love me. I was being hard not to have taken their thoughts on board. I am taking one day at a time and I have kept that bit of weight off but can't seem to get past that weight. But now, after my knee op, I will be able to get around a lot more. I will keep you all in mind when I come out of the op so as to get my butt going and get over it quicker this time around. Love to you all, waytogo xxxx :)

Hello waytogo.Thanks for the update. You sound a lot more positive than you were in August and that can't be a bad thing. I know of a few people who have had the knee replacement op and they have benefitted enormously from it. I hope your operation goes well and I'm sure that with the enhanced ability to move around you will be able to tackle the weight loss much more effectively. Best wishes Bill

Hi Bill, thanks for the comment. I appreciate it :) Yes, I hope to get around more, lol. My old butt might be stuck to the damn chair, lol. I have a huge old butt, no sarcastic remarks, anyone. Thanks again. I sure will be back to let you all know where I am at after surgery. Yes, I know, I will be in the hosp, haha. I am in a stupid place right now :) Thanks again, waytogo.