Has Crohn’s Affected My Mental Health?

Has Crohn’s Affected My Mental Health?

That is the question. Has this life long condition affected my mental health? The honest answer is yes.

It’s not something I’ve spoken openly about for an extremely long time. In the hope, this doesn’t trigger my PTSD again I’m writing about what I’ve had to deal with over the years.

Has Crohn’s Affected My Mental Health?

So Crohn’s Disease has affected me mentally. Prior to diagnosis, I had to deal with anxiety and pain. When your GP wrongly makes the diagnosis of Anorexia when there’s an underlying condition. It took 18 months of dealing with constant pain, fatigue, diarrhoea and constipation which I believed was all in my head.

Me in the early hours after Night terrors

Me in the early hours after Night terrors

The anxiety drove me to tears, I didn’t trust myself with my bathroom habits. I had to know where every toilet was and using the bathroom at work or at friends houses filled me with dread and made me panic so much because of the smell.

Once diagnosed my anxiety levels dropped because I had proof it wasn’t in my head. I had medication to control this and pretty much developed a sense of humour for bathroom habits and smells. If you can’t beat it then join them mentality.

My mental well being was healthy and I had no issues until late 2009.

My bowel and fistula perforated during a C-section. This left me at death’s door on life support and an extended stay at the NHS Hospital for 3 months.

Between coming off of life support and being discharged I developed PTSD and night terrors.

The PTSD and night terrors have not been a walk in the park. Waking up screaming at 3 AM whilst in the hospital and for nearly a year after the event affected me deeply. Every hospital appointment or planned colonoscopy set me on edge, being stressed also sets me off.

6 months after discharge I got referred for counselling and CBT. This helped me immensely, I had to re-train my brain to realise what happened was by chance and that it was unlikely to happen again. It also gave me different coping mechanisms to help.

I go to bed with a notebook and a pen. To be perfectly honest in the last 8 years apart from a handful of times I don’t sleep the whole night. The nightmares wake me up and I have to get up and shake it off and do some writing or reading to help get over the nightmare I just had.

I stopped CBT back in 2012 when I left the Medway trust and moved to Guys & St Thomas’s care.

What happens now

I’ll be perfectly honest the last PTSD attack I had was back in April of this year. I don’t even remember how it happened. But suffice to say I was out of it for several hours and scared the living shite out of Ben. The problem with PTSD attacks is that it wipes the last 4/5 years of history and you divert back to the past. I was asking Ben who he was and where my boyfriend was. Also forgot Maisie had grown and wondered where my baby was. I know what the trigger was for this and have since sought advice to get this sorted and found a new coping mechanism to help me with this.

The joys of PTSD and the draining affect it has on me

The joys of PTSD and the draining effect it has on me

The attacks normally drain me for a few days and leave me rather emotional.

Anxiety

Even the most well-rounded person has anxieties, I believe that’s just us as humans with a high-functioning brain. Most of my anxiety stems from not believing I’m good enough to be with or just wanting everyone to like or love me. I’ve learnt that not everyone has the same heart as me and that shit happens and to embrace it.

The main anxieties with me are toilet related. Wheres the nearest toilet? Is my stoma going to leak? Are people going to notice? Am I going to stink out that toilet? When will I next have an extended hospital stay? These all fly about in my head on a day to day basis but I’ve just learned to deal with it and plan. I’m good at planning and as long as I have spare supplies with me and the BenBen that knows where every rest stop is then I’m dealing extremely well.

The only one I struggle with is staying at people’s houses. Hotels are fine. I have a leak then fair enough it gets dealt with and I can clean myself up. Staying at other people’s houses, however, is a different story, nothing says thank you to your guest by saying I’ve shit the bed and possibly ruined your mattress and bed linen. I’m hoping this is one I will someday combat.

Last time I stayed at someone’s house was back in December at my Boyfriends parents and I’ll be perfectly honest I didn’t sleep well due to worrying about what would happen should I leak in his sister’s bed.

Summary

Most people that know me see me as a happy upbeat person, in reality, some days I’m like a duck, calm on the surface but frantically peddling below under the water staying afloat. Yes, I’ve had the PTSD diagnosis for nearly 8 years and I have anxiety but I refuse to let it beat me. If I’m struggling I open up to those closest to me. I have a fantastic support network from friends, partner and family. If I cry I do it on my own and then confess later. It’s the little things that bug me that I can’t control and see any way out of but thanks to a certain someone I’m good 85% of the time.

My main reason for this is that even the happiest of person could be suffering on the inside. Mental health is so taboo and not spoken about enough.

I’m a strong believer that the NHS should offer all emergency surgery and planned surgery ostomy patients counselling prior to and after the event. This would certainly help those that are too afraid to ask for help.

Please feel free to leave any comments.

 

 

 

 

 

4 Comments
  1. Hi Louise

    I’d say I have anxiety due to my crohn’s also. For me at the moment it revolves around work and making sure things at work are ok in terms of my Crohn’s disease.

    The vedolizumab still hasn’t kicked it. GI Consultant is giving me until 7th August, so fingers crossed.

    Take care

    Elaine

  2. Hi Elaine,

    I’m ever so sorry to hear you also have anxiety regarding your Crohn’s. I can understand with the Vedolizumab. It’s a bit of a slow burner to kick in. Ive got to wait until Ive been on it for six months then have to suffer a Gastroscopy and another sigmoidoscopy to see if the microscopic colitis has gone into remission. I’m still loosing weight at the moment as well. Fingers crossed for you that by the 7th of August that this kicks in and works for you. I’m always here for a chat when and if needed.
    Please take care and keep me updated with your progress

    Many Thanks
    Louise xx

  3. Hi Louise

    How are you doing with the vedolizumab? I have my 4th one on Monday coming but I’m also also back down to 5mg prednisolone and I don’t feel it’s working yet. As soon as I went from 10mg to 5mg prednisolone I’ve started to feel unwell again this week. I feel shattered. Plus my perianal skin tags have become sore again. I did ok with them when the prednisolone was higher but now they’re sore again and surgeon won’t touch them just now because they’re inflamed so it would be bigger holes in my butt and more chance of infection and complications. So in general just sore and tired. Just watched this weeks’ show with you girls and Steve. I’m loving it every week as it helps give me information and also to know there’s other people out there. I’d love a wee bit of time in remission, that would be a bonus.

    Cheers

    Elaine
    ( @elaine__d)

    • Hi Elaine,
      Im seem to be doing Ok on the vedolizumab. I wont know until October/November if the treatment is working as will need biopsies of the bowel taken to see if the microscopic colitis has cleared up. Don’t forget when they taper down the steroid doses that initially it will make you feel slightly crappier than usual until your body adapts to not being in your system. It normally takes up to 6 months for it to be completely out of your system. I’m the glad the show is helping you to some degree.
      Hoping you feel less tired and crappy soon. Yes remission will always be a good thing
      Take care
      Louise xxx

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