Feeling emotional – Stoma and Ileostomy worries

I am still recovering well, physically my strength is returning though I still feel very tired.  Im able to do more now, cooking and cleaning and have developed a terrible nesting instinct!  Honestly its like I am 9 months pregnant, I have an urge to rearrange all the rooms, organise and declutter the world!  This means my house is now worse than it was before as there are piles and stacks of ‘stuff’ everywhere!

I think now that I am recovering physically that my mind is working overtime and mentally I am struggling.  Im over thinking things and at times just feeling really sad.  Im sad that my life revolves  around this bag.  I spend so many hours a day in cleaning, emptying, changing, washing, worrying… I have never been the sort of person who spends hours getting ready so it feels odd to spend so much time on myself.

I spoke to a friend yesterday about the blog and how so many people had told me that it was helping them, and I was worried about posting about the bad days as I wanted it to be about positivity.  She told me that she didn’t think my blog was about positivity, it was about honesty.  And being honest is talking about the downs as well as the ups.  She also reminded me that a blog that was always hyper happy comes across as smug!! So I thought Id write a bit today about how Im feeling.

My sleeping patterns are still all over the place, some nights I sleep well, others the insomnia kicks in and I just can’t sleep at all.  Im also getting up once or twice in the night to empty my bag.  A friend told me that our minds get into habits and it will take time to break those habits.  From June till the end of September I was on Prednisolone and the meds made me be unable to sleep and so for all that time I was taking sleeping tablets.  So I know that its going to take time for my mind and body to readjust to sleeping without any drugs in my system.

But in the middle of the night, when everyone else is sleeping and the house is silent, I sit and overthink… These thoughts tend not to be positive ones.  I feel sorry for myself, a big pity party in my honour.  I sat the other night at 4am weeping at the loss of my ‘normal’ life.  Mourning the loss of a life that didn’t involve wearing an ileostomy bag and having to (literally) deal with shit every day.  I sat there wishing I could rewind time and go back to before my operation.  I cried about how my body looks and feels, that Im weak and tired and that I have the scar and this stoma, this weird looking thing on my stomach that spews waste and I have no control over it.  I feel sad that feeling unattractive affects how I feel around my husband.  I feel devastated that my kids still avoid cuddling me as they don’t like the stoma and are worried about hurting me.  I feel scared that the course of my life has changed so drastically and that it won’t ever be the same again.

When the sun comes up it also lightens my worries, its a lot easier to be upbeat during the day.  I talk to Timm a lot and to my friend Caroline, I know I can talk to them openly and honestly and I know that talking helps.  The old saying of a problem shared is a problem halved is so true.  Im not asking for an answer or a solution to the problems, but saying them out loud makes me feel that I can overcome them and that I have support.

At times when Im not feeling down I can look at things logically, I know that when I want to rewind my life or want my ‘normal’ life back, that actually before the op I was ill.  I was so sick, my bowel was ruling my life.  I was going to the toilet 10-15 times a day and bleeding constantly.  I was one the highest doses of meds and wasn’t responding at all.  If I hadn’t had the surgery I believe I would still be in hospital, I would have had to go onto drugs like Infliximab that carry such awful side effects.

I know that this surgery and my annoying little stoma has saved my life, though it is difficult, it has set me on a road to recovery, a road to a new life without pain, without bleeding and without medication.  Though I still feel that I spend a lot of time emptying and changing my bags, I have to remind myself that before the surgery I sometimes lost control of my bowels.  That was the most humiliating and devastating part of my Ulcerative Colitis.  Now I don’t have that worry!  Before the surgery I was in pain pretty much all the time, now I have no pain.  Before, I was bleeding so much from my bum that at times I had to wear a pad, now I have no bleeding at all.

I have a few friends who are going through really tough times at the minute, all in totally different ways but equally tough.  It makes me think about life and the challenges we face during our lives.  When I was younger and Id read about someone facing illness or the death of a loved one, I’d think ‘how do they cope?!!’ – I now realise that there isn’t an alternative to ‘coping’ – Coping is just putting one foot in front of the other, taking each day at a time and accepting that sometimes life is shit, things happen that are not fair, that situations feel so huge and overwhelming that all you can do is sit and weep.

Sitting and weeping is a necessary process, we need to express our pain and let out our frustrations.  Then we get up, brush ourselves off and keep going.  I think it is so important to have people to talk to, this blog is cathartic for me, I feel that writing all my feelings here allows me to release them. Talking is key, whether it is a partner, family, friends or a councillor.  I think if we can talk things through and be open about our feelings it really helps.  Giving a voice to your worries takes the power away from them.  We all know that we can take a concern and make it bigger and badder in our heads than it really is, speaking about them with someone you trust deflates the worry and I swear it will make you feel better!

Its not about ‘getting over’ a tough time, its about learning to live with it and that is what I will do, I will accept the bad days and sometimes Ill sit and weep, but I will keep going and learn to live with my stoma.

Love Sam xx