what can i do please, help needed

hi all this is my 2nd attempt to 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 hr's away from emergency Hospitals. My partner went to Sydney the day before. I rang 000 (emergency) unlocked front door. I woke up days later in HDU and i thought i was dead until i saw all tubes etc. I was told I had diverticulitis and was no way it could be reversed as it would do it 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. Ok 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 this what i learnt later to be a hernia and was travelling for hrs 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 odour all this was 24/7. My Stoma Sister was off her face and she was hrs away. My Surgeon finally booked me in for a mesh repair.that was September 2008. Got home and not long after i was getting a massive amount of pain just like when it 1st happened was rushed to City n was operated on again as my bowel was strangling cause it broke out of the mesh. went home and in a couple of days 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 cant live with any one re odour etc. Now it has burst the banks again and MY Dr said he has to operate but cant do it where it is he has to move the lot. My problem now is I have bad days n not too bad ones. Dr 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 op. 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 80kgs. I have good days n 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 so scared I wont make it this time round !!!!. 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 helpppppp 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 cant keep it a secret any more. I feel as if i am drowning. waytogo

Afternoon WayToGo....Oh you do have your problems.Bill has good advise for you, asking for help. i have had my share of problems but you have a hughconcern. It sounds like you must loss weight tohelp keep the stoma in...I know mine keeps falling out due to 40yrs of steriods...muscles are shoot. they did tell me to watch my weight as that will push it out! Please try an hang in there!!! I know it is not easy....see someone you can talk too, and try an loss 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 LuckSpade

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 what so ever.sounds like you have had your probs as well and I am thinking 40yrs of them.How long have you had a bag.wow Steroids are a heavy duty thing to be on and for 40 yrs??I was put on Warfarin after the clots to keep my blood thin. That is the big concern for my Dr's 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 re knees so it is going to be hard. thanks again spade waytogo xx:)

Stories of Living Life to the Fullest from Ostomy Advocates I 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 re 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 - maths 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 feels so good to talk to ppl that have similar problems and who have a bag etc.this is the 1st time I have opened up with ppl 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 and that 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 n flowers etc. it took my mind off a lot of my probs as i loved the outdoors. thanks again Diz waytogo xx:)

Good Morning WayTo Go....I hope today is a better day for you. You had ask me how long I have a colomsy...10/7/11 was first surgery for colomsy,than 12/12/11 lost half a lung, than from coughingthe bowel Prolapse, so had another surgery on colomsy 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 dr. first, might be another way to get you moving, to lose some pds. Do get outsideeven if it is sitting on the front pouch. Again Hang in there!!!!!Spade

My friend was i 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, that 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 nothing. 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 and with all your comments, I am seeing that there are ostomates that 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 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 adversity's you had to have done.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's 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 n 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 alot of us. I will be praying for you praising God that you are fearfully wonderfully made. I have bad knees as well have put on some pounds since the ileostomy. I take Advil for the knee pain alot 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 ppl do help and 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 medsas 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 been 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 and will be taken on board and I am getting closer to losing weight than I have ever been as I got my groceries delivered so I cant get items of self destruction. :) I have been making an effort to get on 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 with what you have had to endure 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 Family's and talking to them re 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 re you saying about 2 bags n then the 3rd one is your hubby, Sorry. Thanks again nal very much appreciated. I will weigh myself then try to get seriously walking. with thinking of you all and what you all deal with, will spur me on so thanks all for your help and advice:) 3 waytogo 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.Takes motivation.I hope you get to your goal weight and get your surgery. Best wishes. Keep us updated.And again.. that puppy is soooo 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 your coming around. Hopefully when your kneesare fix you will be runnng down the street. Keepus inform 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 6kg over the last 2 weeks n now that i have started i will keep it up :) thanks again for your ongoing support waytogo

well hi to all of you I am having my knee replacement done on the 16th Jan yehh 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 ppl who love me and 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 cant 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 n 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