How does Crohn's disease affect your mental health? How do you cope?

@DanielW‍ 

hey Daniel thanks for reply I was put on steriods mainly to control the inflammation   That’s all tablets I’m on at moment until they start my infliximab drip this Tuesday as I’m new to this I’m not sure if I’m having a flare up or not but I feel so rubbish that I guess I am. Maybe I’m a bit down then and that would explain the crying sometimes I just can’t stop 

@Tosher I've never been out of a flare myself since diagnoses in July of 2019 so I understand the discomfort, pain, frustration, if your getting bad mood swings of severe frantic crying etc I'd personally put that down to your steriods as I experienced similar issues with a steriod in the past myself. Also for yourself I'd advise speaking to and ibd nurse or your consultant in regards to tablets for the dirrehea also as the steriods and infliximab may only help so much. I'd also advise getting yourself flushable wet wipes as going to toliet that amount can cause discomfort and tearing around the bum. You can get wet wipes with aloe Vera in them. 

@DanielW‍ 

Hey Daniel

Its like you read my mind I have these wet wipes at moment as I have such a sore bottom with constantly going to toilet it hurts so bad when I poop I’m in floods of tears it’s agony I wondered if it was piles I have phoned my ibd team but they are just a message system and they phone back when they have availability to speak my dr is male and I just feel I can’t go to him with stuff like this 

@Tosher you can also get a thing called instillagel their little syringes filled with a numbing agents you inject up your back passage to help numb and ease pain. You can also get creams prescribed to help with the rawness etc which I'd advise asking for. I currently go about 30 times a day myself and have done since July 2019. Infliximab is meant to be great so stay optimistic and hopeful that it works don't be over thinking it just have trust in the medication. Also drink diorlytes to replace your sugars etc and keep you highdryated. As far as I'm aware as advised my consultants and gp that these are fine to drink with crohn's I get blackcurrant flavor and put them in dilute. I drink roughly 3 to 5 daily to help with fatigue and exhaustion from dirrehea. 

@DanielW‍ 

Thank you so much Daniel I really appreciate all your advice and help I will look into all this and hope it will improve things.it is all very exhausting isn’t it ?I hope you are as best as you can be and thanks again for your advice 

@Tosher yeah it's truly exhausting. I'm getting by used to it by now and glad to help in anyway I could. Also look into something for your partner to help him understand and cope. Theirs a good few things out their for partners with ibd etc may be worth showing him might make him feel that bit more confident in helping you and understanding this difficult situation 

@DanielW‍ 

Thanks so much Daniel 

Hi my name is Peter Hopper aged 74 and have had crohn’s after diagnosis for 37 years.

Looking back it started in my early 30’s with bouts of severe stomach pain and frequent trips to the toilet, sometimes up to 20 times a day. I had many trips to the doctor and also many different types of medication, which sometimes helped but mostly didn't. I was so ill at one stage that I couldn't get out of bed for over a week and lost 10 kilos through a combination of sleeping and not eating because I was so weak.

This went on and off for a couple of years until one morning I woke with terrible pains in my tummy to the extent that I was sweating and being violently sick. My wife called for and ambulance and I was taken to hospital. I was given morphine for the pain and taken to the operating theatre, where I had 10 inches of bowel removed. The surgeon told me I had chrohns and at this stage I had never heard of it. The surgeon was very good and over the years he looked after me, even coming to my house if I was ill and my wife phoned him. Sadly a few years ago he died of throat cancer and I often think what a waste that was because he was a very nice man and a great surgeon.

Since that time I have had a few trips and stays in hospital but luckily I have not had any more operations as they have managed to keep it under control using steroids. A medication that has its drawbacks with all the side effects but at that time was the best option for me.

I was still working and travelling all over the world with my job as a mechanical engineer. This was very stressful because when I was about to travel, I would not eat for12 hours before my flight and kept fasting until I arrived at my destination. Depending on where in the world I was working it could be upto 3 days before I ate anything.

I'm quite sure that air travel affects your internal organs and especially the bowels because of the difference in air pressure and this was the worst time for me during take off and landing. This is the reason I didn't want to eat before flying. Even now eating before travelling by car is not an option if it is a long journey.

Mental health is a problem I suffer from, I have anxiety, depression and have been diagnosed with PTSD. This has been going on for some years now which has affected my relationship with my wife and children to the point of being given an ultimatum to see a psychologist or leave the family home. I was then told of the mental health symptoms and I now see a psychologist regularly.

I have been taking medication for the symptoms and also have been taking infliximad for three years, it does help with stomach pains but I still have problems going to the toilet often.

I do get depressed because of my situation and have to say I have even thought about ending my life. I have also just recently been diagnosed with mild heart failure which arrived all of a sudden and because of the years I was taking a high dose of steroids, I wonder if they have caused this new health problem. I do plan when I'm going out and about by not eating or most of the time I tend to stay nearby or in doors because of the stress it causes.