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hannah-rose

hannah-rose

Joined
Apr 22, 2011
Messages
520
Hi guys,

Well I'm back here again sooner than I expected :(

I've only had my last Infliximab infusion 6 weeks ago and I'm noticing sore ulcers on my behind again. I have been a little stressed and a bit run down, but I can't believe the Inflix has given up after just 6 infusions. I'm so gutted. It was my miracle drug, and now its not working, and I had a reaction to it last time anyway, so I may be starting Humira instead. I dont know if Humira is as good - does anybody know? It's more convenient at least, that's something. But then what if that stops working? Prednisone? I've just started azathioprine today, taken my first dose. I'm praying it helps. I'm 24 and if all drugs fail and my butt hole just turns into this ulcerated mess.... I'm not actually sure what happens after that.

My Doc is an amazing guy, he doesn't seem concerned with my gut at all, and to be fair it's not much bother to me, but I am a little worried. I go weeks being constipated then weeks having loose BMs, then back again. Occasionally I get a dragging pain where my appendix is, or twinges in my large intestine (but it's very mild). I just have crohn's in my anus and I get ulcers and fissures very badly. My butt looks like its been through the wars I can tell you that.

I was able to cope ok before because I was still living at home with my parents doing a really easy job that didnt care how much time i took off for appointments etc, and i had all my friends around me all the time. Since then I've moved to London to start a new job, I commute about an hour each way, am out the house from 7:40am until gone 7pm, rarely get enough sleep etc. I thought this was what I wanted but it's been incredibly hard, and just as things seem to be improving my health takes a turn for the worse. It feels like I have to choose between a career and my health.

Work is a big issue. My boss seems to think he's being sympathetic and that most other employers wouldn't be as understanding as him about all the time off I need for appointments etc. although I hardly think sitting in front of me going 'Hmmmm' and saying 'How's your health? Can't you get your blood tests on Saturdays? You know this means you'll be out of the office for a whole week out of the year' etc. before going 'Don't worry this wont affect your contract!' is sympathetic. So I basically think every time I have to ask for time off for an appointment I'm going to get fired. (I know this is illegal but it doesn't stop me worrying). I don't know where I stand regards to employment law, my contract states I must try and have appointments during holiday or my own time, but that's not possible, I asked if I could make up the time and he said he said the point was he wanted me in the office the same time as everyone else...

I don't really have anyone close here in London. No close friends, my house shares pretty lonely (I'm looking to move), I've got a boyfriend I've been with for just over two months and he's lovely but it's all very new so it's not like being with my family or my friends ive known since school.

I basically just feel scared, alone, and I keep wondering whether everything's going to work out in the end, or whether I'm going to get sick and have to give up everything I've worked so hard for during the last three months.

It sucks to be ill.

Hannah x
 
I'm sorry Hannah. :( Hopefully the new meds kick in and help soon. For me when I was in a flare my GI had me on steroids (sometimes just Prednisone or Entocort and one time both before my surgery), an inflammation blocker (Asacol) an immune suppressant (6MP). To me it makes sense to have a combination of meds to knock out the flare and kick start remission rather than trying out things slowly to see what works on its own and then start adding other meds.

I've read some people doing better with Hurmira than Remicade but all we can do is wait and see. I haven't taken either one though.

Just do your best with the job and appointments. The road may be long and difficult but your health is more important.
 
Hi Hannah,

I'm really sorry to hear things aren't great at the moment :-(

I know exactly how you feel about the work thing, my old manager (who luckily quit) was sort of sympathetic but made me feel quite bad for taking time off for appointments/numerous blood tests and would always suggest that my mum should ferry me around between work and doctors so I had the least amount of time off (my mum works in a completely different town so this was not possible at all!).

Anyway I hope the Azathioprine does some good for you, let us know how everything goes :) xx
 
I'm sorry Hannah. I wish I could wave a wand and this would go away. You need to be strong. Ugh. Don't you hate me for writing that? But you really do. People are pretty ignorant about what we live with because most of us are pretty good at hiding our disease. I have no advice but I promise you that I know what you are going through and I care.
 
Hi Hannah,

So sorry to hear you are unwell.

I know you are going through a really rough time but just know there are so many people who care about you and who want to see you get healthy and do well in life. When you are down try to imagine your healthier self in the very near future :)

If I were you I would focus on my health first and worry about a career 2nd. After all if you aren't healthy you won't have a career. Have you considered moving back home where you have support and an easier less stressful job so you can get your health back in line? You have your whole life to build a career and be successful.

I don't know much about the medication you are on but I was diagnosed with Crohns Disease a few years back and I am med free and have been for 2 years with no crohns disease symptoms whatsoever. It was a rough journey trying to find answers but after a lot of research and trial and error I found what I was looking for. A change in lifestyle, diet and jobs and now I'm almost 100% back to my normal self. :)

What did I do?..I decided to put my health first. (I was also very stressed at work and was very ill). I changed my job and I stopped trying to jam pack a million things into my schedule. I started to research Diet and health and finally found out about the SCD Diet and the GAPS Diet and found out how awesome Coconuts are for your health. What you eat and the lifestyle choices you make WILL influence your health.

I can't recommend these books enough:
Gut and Psychology Syndrome by Dr Natasha Campbell-McBride (Explains GAPS diet)
Breaking the Vicious Cycle by Elaine Gottschall (Explains SCD diet)
The Coconut Oil Miracle By Bruce Fife
Coconut Water for Health and Healing By Bruce Fife
Coconut Cures By Bruce Fife

All of these books have helped my crohns disease so much that I have absolutely no symptoms whatsoever and I'm sure they will help you and your symptoms.

Virgin Coconut oil has helped soothe and heal my digestive tract so much. I'm sure it will probably help your constipation, ulcers and sores.

Take care.
:)
 
Hi Hannah. I'm so sorry to hear you're having a hard time again. Sounds like you've had a lot on your plate as well as the Crohn's to deal with. Are you a member of NACC? I'm sure they must have quite a few support groups in London. It might be worth checking them out.
 
Hannah,
I am sorry to hear things are so tough right now. I believe that you CAN hold onto a wonderful career despite your illness, even though the symptoms (and the bosses) don't make it easy. Hopefully your new meds will kick in and you will start to adjust to your new life - I often get bad symptoms when I move/start a new commitment/am under a lot of stress, so it could be that things resolve once you start feeling at home in your new place. And as always, it pays to know your rights, so don't let your boss bully you into quitting or giving up on your dream. You deserve an excellent life and future.

Good luck to you - and remember, we are all here for you!
:)
 
Hey everyone :) thank you so much for your replies, I'm sorry I haven't had a chance to reply yet, I get so little free time now I'm in London.

@crabby I tried talking to my GI and nurse via email about the fact I wasn't sure my combination of meds was correct and that clearly Inflix wasn't working but my GI's on leave and my nurse has to wait for him to get back before we can decide what to do next. At the moment I do have uleration, minor pain and bleeding but I'm just trying to ignore it and carry on taking the Aza.

@Artificial Thanks for the kind words :) yeah it's like employers have no clue! Yeah of course I can have my blood tests on Saturdays, I'll just do it DIY at home! What a numpty.

@Slugger Urgh you're right, sometimes being 'strong' is exhausting. It's so hard for people to understand what I go through, I explained it all to my boyfriend recently and he was lovely and very sympathetic and couldnt believe I'd been through so much last year, but now when I say my butt hurts I think he finds it hard to imagine what it must be like.

@MedFree It's crossed my mind to move back but really I think it would make me more depressed - I spent last year hating my job and feeling like a failure living at home, and now life is still tough but I've got such a good opportunity with work and I've got a relationship now that I don't want to throw that all away. The coconut thing sounds interesting - why is it apparently so good for you? Thing is my ulceration is literally just on my anus, so what I eat and drink doesn't really have any effect because my gut isn't effected. I guess I could rub coconut oil on my bum! I do need help with constipation, and I know coconut is a laxative, but its dangerous to get dependent on laxatives, although I currently take Laxido regularly.

@Grumbletum Yes I'm definitely considering joining the NACC, at £12 for the year it can't hurt. It would be nice to make some friends or get some support from other sufferers. Are you a member?

@CrohnsCHES Thanks for the words of confidence :) My line manager has appointments every Thursday and the boss is ok with that so it makes me feel a bit better. Once the two months of aza blood tests are over then its only one blood test every two months.


My problems aren't just Crohns however, I wonder if I'm suffering from mild anxiety or depression. last year I had my op, colonoscopy, CT, loads of drugs, tissue viability nurse, all the medical stuff basically, and my inflix which finally healed my butt. 2012 started in almost perfect health and by February I was 100%. The problem is since I moved to London I've found things extremely difficult and I've been feeling really down and even now I've adjusted to things I still feel like I'm destined to be perpetually dissatisfied with life.

I wonder if my job is what I really want to do, I wonder whether I should stay where I'm living or move, I'm experiencing a lot of anxiety around my new relationship. I basically just can't figure out why I'm not happy when on the surface things pretty good. Ok things aren't perfect, but then when are things ever perfect? I've got a terrible habit of overanalysing EVERYTHING in my life, and this leaves me feeling tearful and doubtful and paranoid and generally I wonder whether I'm just a bit ****** up in the head (scuse my French). Like, I wonder if it's my living situation causing me the drama, or its the relationship, or its the job, or its all three? What's the alternative? My previous dream of teaching English abroad had to go on hold because of health, and even then I wasn't convinced it was the right choice.

Basically, I ALWAYS worry about whether I'm doing the right thing/making the right decision about everything. I think about the meaning of life all the time. I wonder what the point of everything is. I wonder whether working long hours will be worth it in the end. I wonder what I need to make me happy. I wonder whether I'll fall in love with my boyfriend or whether I'm just relying on him to keep me company in a city where I don't know many people. I wonder whether my anxiety surrounding relationships is normal, where it stems from, how I can fix it.

I wish I could just be normal :(

xxx
 
hannah-rose said:
I wonder whether I'll fall in love with my boyfriend or whether I'm just relying on him to keep me company in a city where I don't know many people.
Click to expand...

Hi hannah-rose! Thanks for the update! :D

There was a lot said in that post but this it one of the things that really jumped out at me. You mean to say that you aren't in love with your boyfriend? If that is the case then ya, you've got a HUGE problem on your hands. Moving in with someone is very stressful and for me I notice all their flaws right away. If you don't care enough for that person then you'll grow to resent them rather than accept the little things or try to work on the things you simply can't tolerate. If you really aren't in love with him then I wonder if having your own place might be better and then move back in when you're ready. You can't force yourself to love someone, that takes time.

Making friends takes time even if you make friends with some of his friends. So in that department just try to stay open to possible friendships.

What it also sounds like is that you need a place for just you to go and relax whether its a park, coffee shop, library or whatever. You need a place where you feel comfortable and can do something you enjoy be it reading, drawing or just a place to sit and think.

As far as the what ifs go with your job and the move, you never really know if its a good idea until you go out and do it and give it some time. So far you've gone out and done it now you're trying to give it time. Honestly I don't know how much time you should give it but I do know that worrying about everything all at once is far too overwhelming. I don't think there's something wrong with you but you just made a TON of new changes so it is possible that you could be dealing with depression on top of everything else. Seeking counseling really isn't a bad idea because they can help you work through your issues that you have in every department, work, the move, not knowing anyone, your relationship etc. This may help you deal with the stress which is good for many things including avoiding a flare because stress is a trigger.

Also don't forget, we're here anytime. :)
 
Crabby said:
You mean to say that you aren't in love with your boyfriend? If that is the case then ya, you've got a HUGE problem on your hands. Moving in with someone is very stressful and for me I notice all their flaws right away. If you don't care enough for that person then you'll grow to resent them rather than accept the little things or try to work on the things you simply can't tolerate. If you really aren't in love with him then I wonder if having your own place might be better and then move back in when you're ready. You can't force yourself to love someone, that takes time.
Click to expand...
Hey Crabby,

Oh no I'm not living with him! I moved down to London in April and I'm living in a shared house with three girls, but they're out a lot so it gets kinda lonely, thats why the living situation isnt ideal.

As for the boyfriend, we've been dating for nearly three months and made our relationship 'official' a few weeks ago so it's really early days. I like him a lot, but it's too early to say whether I'm going to fall in love with him, and because I had a bad break up with my ex I'm having lots of doubts, paranoia and insecurities in the relationship.

As for the rest, it's very true it's so many new things all at once, and it's been a lot harder than I anticipated, although I feel like things are getting easier. I'm seeing the nurse tomorrow and I'm going to get her to examine me and maybe ill talk to her about how im feeling.

I really appreciate all your kind words, genuinely, even typing how i feel makes the problems much easier to deal with

xx
 
That's a relief! Ha! Although I know if it were me I have a hard time living with other girls. Had to live with 5 other girls for a month once. We got along for the most part except for one girl who was a total bitch. Hopefully the ones you live with are cool. Who knows, anyone of them could turn into a life long friend. Out of those 5 girls I'm still friends with one of them and its been years since we lived together.

Maybe you could look at the move and new job as an adventure rather than permanent. You could go back at anytime. Having that thought in the back of your mind is like a safety net.

Maybe the nurse can help give you peace of mind with your health as well and point you in the right direction for therapy if you decide to go that route. Just talking to someone about your cascading thoughts and worries is helpful.
 
Yes, Hannah, I'm a member of NACC. They've just help organise a new Highlands and Islands chapter, so we might even see a small support group here on the edge of the world :). I like getting the regular news updates etc.
I'm not surprised you're feeling unsettled with so many changes happening at once. Not only that, but I was chatting to a friend who also has a chronic condition and she was saying how much it can make you lose confidence and also, your sense of self. If you have a good relationship with your GP, it might be worth having a chat with them. Or NAAC have a telephone helpline.
Don't give up on your dream. I taught English abroad for 20 years, albeit pre-Crohn's.
You're in the right place to find a course and also work in that field. It's always something you could do til you feel well and confident to spread your wings.
 
Hey Hannah,
I know exactly how you are feeling, you are not alone!!!! Crohns has taken college semesters away from me so many times, and i now live in south Korea as my husband is a soldier and were based here. It is so hard to be so far from home especially while dealing with flare ups! Mine is so bad right now the physical pain has me in tears and all I want is to be home in America :( so just know you're not alone, ::sending hugs::
 
hannah-rose said:
Hi guys,

Well I'm back here again sooner than I expected :(

I've only had my last Infliximab infusion 6 weeks ago and I'm noticing sore ulcers on my behind again. I have been a little stressed and a bit run down, but I can't believe the Inflix has given up after just 6 infusions. I'm so gutted. It was my miracle drug, and now its not working, and I had a reaction to it last time anyway, so I may be starting Humira instead. I dont know if Humira is as good - does anybody know? It's more convenient at least, that's something. But then what if that stops working? Prednisone? I've just started azathioprine today, taken my first dose. I'm praying it helps. I'm 24 and if all drugs fail and my butt hole just turns into this ulcerated mess.... I'm not actually sure what happens after that.

My Doc is an amazing guy, he doesn't seem concerned with my gut at all, and to be fair it's not much bother to me, but I am a little worried. I go weeks being constipated then weeks having loose BMs, then back again. Occasionally I get a dragging pain where my appendix is, or twinges in my large intestine (but it's very mild). I just have crohn's in my anus and I get ulcers and fissures very badly. My butt looks like its been through the wars I can tell you that.

I was able to cope ok before because I was still living at home with my parents doing a really easy job that didnt care how much time i took off for appointments etc, and i had all my friends around me all the time. Since then I've moved to London to start a new job, I commute about an hour each way, am out the house from 7:40am until gone 7pm, rarely get enough sleep etc. I thought this was what I wanted but it's been incredibly hard, and just as things seem to be improving my health takes a turn for the worse. It feels like I have to choose between a career and my health.

Work is a big issue. My boss seems to think he's being sympathetic and that most other employers wouldn't be as understanding as him about all the time off I need for appointments etc. although I hardly think sitting in front of me going 'Hmmmm' and saying 'How's your health? Can't you get your blood tests on Saturdays? You know this means you'll be out of the office for a whole week out of the year' etc. before going 'Don't worry this wont affect your contract!' is sympathetic. So I basically think every time I have to ask for time off for an appointment I'm going to get fired. (I know this is illegal but it doesn't stop me worrying). I don't know where I stand regards to employment law, my contract states I must try and have appointments during holiday or my own time, but that's not possible, I asked if I could make up the time and he said he said the point was he wanted me in the office the same time as everyone else...

I don't really have anyone close here in London. No close friends, my house shares pretty lonely (I'm looking to move), I've got a boyfriend I've been with for just over two months and he's lovely but it's all very new so it's not like being with my family or my friends ive known since school.

I basically just feel scared, alone, and I keep wondering whether everything's going to work out in the end, or whether I'm going to get sick and have to give up everything I've worked so hard for during the last three months.

It sucks to be ill.

Hannah x
Click to expand...

Please get the book Self Healing Colitis and Crohn's by David Klein, Ph.D. It helped me so much.
Suzy
 
Thanks again for the kind words guys :) sometimes a little support is all you need to feel better. My butt is sore at the moment and it scares me but I'm trying to think well, I healed before and that was a major wound so I know my body can heal again. It's frustrating but I'm going to buy a sitz bath and have really warm salt soaks to help blood to the area and help the ulcers heal, and I have been using a 1% over the counter hydrocortisone cream when it's sore too (vaseline or sudocreme when it's not) my doc hasn't told me to do this but I was using a really strong steroid cream on it last year so I figure a very mild one can't hurt and may help to bring down the inflammation. can you get mesalazine or any other type of anti-inflammatory as a cream?? Might be helpful for me to use a daily anti-inflammatory cream to keep the area calm.

Having the NACC helpline sounds great, there's many times when I need reassurance that I'm not going to die (over dramatic) and having a helpline available would be so helpful.
 
What? You aren't going to die. You'll be fine. Scary thoughts is all they are.

As far as the creams go, I dunno, that sounds like you'd need a prescription. If you can't get one from your specialist maybe your regular doctor might be able to slip you a scrpit.

Hey David or DustyKat (I tagged you guys cause you've been around so long and one of you has to remember the name, I always forget), do you remember the name or brand of that, well, butt cream that a lot of people used to mention on the forum back in the day for irritation and lots of pain in the anus region? Was usually suggested to people when they were prepping for a scope.
 
Thanks guys I'm going to google it, see if they do it in the uk. Yeah no I know it's just fear mainly, it's that oh my god it's back moment which I find hard to deal with a lot of the time, but luckily I have a GP here now and a lovely nurse who was really supportive when she took my blood yesterday and I told her about how I'd been feeling.
 
They gave me a cream in the hospital to calm my bum during the Picolax prep and it was very good. Dammit, I can't remember the name, but I think it began with a C also. Will have a Google.
 
Thankyoooou. My butt really hurts right now. Don't eat really spicy jerk chicken. I feel so ill, sick and in pain :(
 

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