Flaring and feeling worried..

Hi

I'm 24 and was diagnosed with crohns disease 6 years ago. never written on a forum but thought i'd give it a try. My first flare was particularly bad. I did not respond well to any medication and after 9 months on steriods and pain killers, constant agony, losing 2 stone (going from a size 14 to a size 8) ended up with an emergency bowel reseaction. All seemed well after but infortunately 3 months after the surgery I was rushed into A&E and had another resection due to my bowel closing.

Well 5 years on an the dreaded crohns is back. I was very lucky to have 5 realtively symptom free years (except for the odd bad day and D if i ate the wrong foods) however i'm back to the stage of having D after every meal I eat and noticing the pain returning gradually. It seemed to creep up on me and I think I was actually in denial for a while until I ended up in the car 10 minutes away from home and had an accident. This was my first ever accident and I cant begin to describe the utter humiliation I felt..I've even traded in my car as hated the reminder everytime I got in. The pain is nowhere near as bad as during my first flare but I no longer smoke (and havent done for 5 years) so guessing this is a big positive for this. feeling really worried incase the flare is building up like it did last time round and I end up really poorly again. I work full time and my job is stressful so I can not afford to be ill!

My specialist put me on budesonide however changed me onto pred after 5 weeks due to the budesonide having no effect. Well 7 weeks later of starting on 40mg a day and cutting down as directed (currently on 25mg) i'm feeling as rubbish as ever. I'm having to cancel plans with friends as darent leave the house after a meal as I end up spending my evening in the bathroom . We went through IVF in february which failed but I gained 18 pounds during and after treatment so trying so hard to keep the weight down whilst on the pred. Last time I was ill I lost a lot of weight very quickly but this time the weight doesnt want to budge. Instead I'm getting a lovely beard, acne and moonface (due to the pred i'm guessing). Not the most wanted side effects for a 24 year old female but i'll try anything to get better!

My husband is very understanding and really supportive but I cant help but feel rotten and guilty for having this stupid disease. We married 4 months ago after 5 happy years together and for me it feels the honeymoon period is definitely over as everything centres around my crohns at the moment and my reluctance to make plans and leave the house except for work must be hard to understand. Also the awful stink coming from the bathroom constantly isnt the most romantic thing for him to put up with! :stinks:

I'm waiting for confirmation of a colonoscopy appointment which is hopefully in the next 2 weeks and the specialist has spoken about starting me on infleximab?? following the colonoscopy. I had an xray the other day and bloods done so hoping I have the colonoscopy soon and can start the new medication.

Reading back through this its not the most positive but just wanted to vent how i'm feeling really. Really hoping this flare isnt going to be as bad as last time!

xx

Hello and welcome to the forum, I am sorry to hear that you are having a tough time of it again

The side effects you have mentioned above can definetly occur with the Pred - what dosage are you now currently on? Has any type of dietary changes been mentioned to you to at least help with symptoms? We do have a sub forum for the Infliximab that is worth looking at to find out more about it: http://www.crohnsforum.com/forumdisplay.php?f=58.

Also given your previous ops have you ever had any of your vitamin levels checked?

Will keep fingers crossed that you can be feeling better soon.

AB
xx

Thank you i'll have a look there

Yeah i had my vitamins checked a few weeks back and they were suprisingly okay (I say suprisingly as I can hardly tollerate fruit and veggies and always thought they'd be low with my surgery and current regular trips to the bathroom) but I have been taking multivits for a while now so perhaps they do some good!

Theres people a lot worse off than me with the disease, I think I was just having a down morning and needed to vent but thank you for your reply :ysmile: .. The colonoscopy appointment didnt arrive today so hopefully it will arrive on monday!

xx

Wow, reading your story is so familiar. I can't believe I waited so long to reach out to others like me. I hope all goes well with you. I've been married 8 years to a wonderful man and he is supportive as well. I know how you feel about it being hard for him, my husband says it would be even harder if I weren't around and I'm sure your husband feels the same way.

Vent away hun! This is the right forum for it and at least here we all know where you are coming from. Please keep us updated on how you are doing.

Sounds like you went through a really tough time during your first flare but stay positive in the fact that not all flares are the same.

You say you have a stressful job - have you tried meditation or yoga to help the stressful times? Im sure your husband knew about your illness before so he will want to be more supportive during this time. After ive been to the toilet, I usually say "give it 5 minutes" or "you might need a gas mask!" Making lightness of the situation helps.

Giving up smoking is a huge plus (Im attempting to quit once again tomorrow)

Hope you get some results and feel better soon.

Just to update I've got my colonoscopy next week so relieved about that.. Not looking forwards to the prep but it'll hopefully be worth it!

Quick question, im still having D everyday, however towards the end of the day the urgency stops (cant actually go despite trying) but I've started vomiting.. This has happened the last 4 nights. I wasn't sick at all before so not sure what's going on? Does this sound at al familiar? I've had a little pain but i know it's not a blockage as had one before and the pain was much much worse! Could it be because of inflammation or simply food intolerance? Could it even be that after months of no joy the pred is actually starting to work which is causing the alternate of D and constipation from morning to night? Not sure if it matters but I've also cut down my food during the day due to work and eating a bigger meal at night (once home and safe for the bathroom) so could this be a factor?

Xx

I would see about getting onto your doc about this new symptom and see what they advise, after the length of time that you have been on the steroids you should really be feeling improved by now not worse.

As my colonoscopy is only a week away I'll wait and see what results come back as don't want to waste the docs time, just wondered if anyone had experienced similiar. It's kind of bitter sweet as feels like its getting better in the sense the D stops at night but at the same time ideally shouldn't be vomiting. I'm actually over analysing everything at the moment so may be nothing and more so mind over matter.

Thanks for the reply x