Struggling with Recovery and Emotional Rollercoaster

Hi everyone.

Well, on the 31st March, I underwent an Ileal Conduit irreversible and found the time in the hospital upsetting, trying to get

used to my new companion and how to change it and deal with accidents. I took things pretty steady for about 4 weeks

then started to do a little dusting. After 9 weeks, I felt pretty okay and decided to do more around the house and try and

get out and about, which felt really nice, having a slow walk along the beach. Then I started to cry for no reason on

and off until the present day. I thought I was going round the twist and didn't want to talk to anyone about how I was starting

to feel. My family thought I was being silly crying and my ME flared up big time also, which didn't help matters whatsoever. I went to the hospital and had my 1st check-up from the operation and was told I was doing really well and I will be seen

again on November 23rd. I got used to changing my bags and keeping the area clean, etc., but I still keep breaking down

for no reason and I am starting to get a lot of stabbing pains next to the stoma site most days. I don't want to go and

see my GP in case I end up being readmitted. I've spent most of my life in and out of hospitals now and really

can't handle much more. I haven't been on here for a long time as I've been ill with so much and having shingles also.

Then I found out my dad has multiple sclerosis and is due to have a major op anytime. Also, my mother is very ill

and I'm worrying about them and feel useless as I live nearly 300 miles away. Then today, I've had pain on and off

all sodding day and my urine in the bag is very cloudy and like a lime color, and I have backache, so I think I have

a water infection, yet I'm drinking loads. I was browsing some of your blogs and noticed quite a few of you guys

also getting pain near the stoma site and felt pretty reassured knowing I wasn't alone and it could be a sign of

overdoing things or a possible hernia. So today, I decided to not hoover or mop and just dust and do some dishes,

but I've still got the pains on and off. I'm having a crap day again and feel like crying and locking myself in the

bathroom so my eldest doesn't see me upset.

Anyway, I'm ranting on like a hen and just wanted to let you know I've had the op, feel down a lot, and I do have good

days, but a lot of real bad ones also.

Love to you all and take good care.

Jules. X X

Keep your chin up, Julie. It seems that when it rains, it pours sometimes, but the sun will shine again. I'll keep you in my thoughts until it does,
Your ostomate sister, BEG

Awww Julie, I can relate to what you're going through. I too had lots of trouble after my op and worries. It sounds to me like you need a real break in life. Thinking of you and you're in my prayers too. ((((Hugggggsssss)))))))..tc Ambies...xx

Hi Julie, well you're just getting the worst part of it all over as soon as possible so you can relax and not have to worry later. It sounds to me that you need a great big kiss from my therapy dog Spirit. We go to the hospitals and we talk to new ostomates. We are also certified ostomate visitors and let people know it is not all bad. At least we are still alive and for 99% of us, we would not be alive if we didn't have this crappy bag attached to us. I have an ileostomy and am 3 years into it now, and it does get better. It just takes a while... lots of hugs from both of us, tiny Spirit.

Hi Julie, like BEGirl said, keep your chin up, and things will get better. I've been where you are and we all know how it feels, so just keep on dusting and start smiling and stop the tears, and you will be fine. From another one of your ostomate sisters, Sherrybear.

Julie, I feel the same, but don't let the black dog in... You're going through what most of us do. I had some major crying issues when I was seeing one doctor, then the next. Take this pill, another doc says don't do that, take this. The anti-depressants didn't work. And as Begsy said, it will get better. You've got other family things going on as well, and it's all on top of you. I'm trying to help myself, and I do make mistakes a lot, but every day is a new day. Try that, I do, and I say, "Okay, today is going to be better because yesterday was shite." I've been in and out for 21 years and I'm over it as well. You do need someone to talk to. We all care because we get it... The family things are another thing. It's such a lot for you, darlz. Please see the light. The dark really sucks... xxxx Mooza

Hi all, I would just like to say a HUGE thank you to all you lovely caring ostomates who have commented on my post. After reading them all, I felt so much better and had a smile on my face for a change. I appreciate your kind words and prayers, and bless you all. Love to you all and take good care. Nice to know we can all share our thoughts on here and also have some giggles along the way on our journeys living with our new baggies. X X

Hi Julie, I can so see where you are coming from, as can many others. This op we have affects many in different ways. I have had my ileostomy for 5 years now, and still have very down days where I want to hide in a corner. Why? I have no reason. I suppose I feel different to others around where I live. What makes it worse is I suffer from fibromyalgia as well and am now unable to work. I am now on morphine. I am only 46, with a mind of a 21-year-old, and I guess these are the days when I think, "This is all shit." I am sorry if this is a dark reply to yours. It's weird but reading yours kind of helped me to get this out. As for the housework, well, I have OCD, and my mother, bless her, was around daily helping. And as soon as her back was turned and she went home, I would attempt to do the things again. She now lives in Florida and is 73, married to an American, and OMG I miss her so much. Damn, Julie, lol. I am sorry. I hope you pick up and things will get back to normal. I know it will. We are all here for one another.
Sending love
Kellygirl xxx

Hi Jules, you sound like you're having a tough time. I do hope things get better for you soon. I've just had my ileostomy a couple of weeks ago and am finding, like you, that I get sharp pains around my stoma and that I cry for no reason. Reading posts on here reminds me that I (like you) am not alone in the way I feel and that things will get better. I'm sure that soon your good days will outweigh the bad. I hope you soon start to feel brighter. Best wishes. :)

Hi, Jules. I am new to the site but not to the ileal conduit for 35 years. I have gone through 88 surgeries and still kicking. Keep your chin up and things are not as bad as they seem. Take care. Heartwarming.