Crohns messes with your head

[Grant]

Its like it mocks you, everything can go quiet for a few days & you build your hopes up. You tell your loved ones that things are looking up & bang, all hell breaks loose & your a virtual prisoner of your toilet.
Its like Crohns has a mind of its own & it takes its toll. Very difficult to keep your sanity through the constant ups & downs.
Keep well

1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection

Been on Azathioprine & Pred

Currently on Entocort 3mg every other day
Humira 40mg every two weeks
Calcichew
Pentasa 4gm daily
3mthly B12 Jabs

 

[handle]

Sadly true Grant!! Sometimes it helps to simplify things. Focus on short term goals, and do things to make yourself happy, whenever you can. Good life skills. Hang in there.
all the best.

 

[ruthyp]

i defo feel the same, im having counselling at the moment to deal with the pain i went through during my month in hospital, i tell people im having counselling and they just say " but your out of hospital now, why do you need that for?" which really upsets me that they dont understand that when you go through that much pain after you think your in remission and you get told you could have died, it affects you quite abit!

 

[ekay03]

agreed!!!!!

 

[chanel_loraine]

Hello everyone I'm new here. It's so refreshing that other people feel the same way I do. Crohn's really messes with my head and I hate thinking that i'm on the up and up and bam! On that downhill slope again. It is so disheartening because i feel like my life is on hold! Have any of you had consistent abdominal cramping with this disease? My CT scan shows things are looking good but my body is saying NO WAY! Other then that, I am definitely considering doing counseling as well to talk about the pain and just having to deal with this chronic disease. I hope that all of your health gets better sooner rather then later!


Dx April 2011
Current Meds: Prednisone 20mg taper, Remicade, Vicodin and Belladona alkaloid with pb for pain (is anyone else on this belladonna stuff?)

 

[bonbonbowen]

this is true, sometimes I feel that crohn's is a nasty monster eating my insides! lol. Perhaps I need therapy.

X

 

[Keona]

yes. it. does. !!!

 

[AndiGirl]

I couldn't have said it any better, Grant. Just when I think that I'm learning how to deal with the disease, I'll flare-up, and once again lose my self-confidence. I know that I can be a big baby, but there are times when breaking down in tears is the only thing that will help release some of my tension and pain. I'm thankful to have found this group. I can't believe that I didn't look for it much sooner.

 

[Grant]

Thanks for the replies. Afraid here in UK that counselling on our wonderful NHS is very slow with regards to being available, in my area of UK @ least. The nature of IBD makes it imperative to be able to talk, thats why this site is such a godsend really.
Rgds
Grant

1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection

Been on Azathioprine & Pred

Currently on Entocort 3mg every other day
Humira 40mg every two weeks
Calcichew
Pentasa 4gm daily
3mthly B12 Jabs

 

[ruthyp]

Im not sure if your at work, but go to occy health if you are. I work for the NHS and through occy health i got to go to Care First, i got an appointment with counselling within 3 weeks of being reffered, i think alot of companies use Care First and they have helped me alot. Also talking to family, i dont know about you, but i have always tried to hide how ill i am because i didnt want to upset people, but then when i was admitted, it was more of a shock because i didnt tell them. Talking to friends and family really helps too. xx

P.s : the NHS in the UK really does not have enough experience dealing with crohns or colitis, its important to find a specialist hosp ( i go to st.marks in london which is a 2hr journey from my house) but its worth it. I feel like because i work there that i should support it, but it definatly fails alot of people with special illness's
xx

 

[Grant]

Ruthyp, I'm in a bit of a strange position. I'm still classed as an employee but have been off sick for 7 yrs.
I have to be careful what I say to my wife, she's been absolutely wonderful & we've been married 27yrs. But she has a history of bouts of depression mainly caused but my health!! I have to pick & chose my moments so to speak. I have spoken to people as supplied by my works health provider but IMO this website is better because its full of people that understand.
My local hospital is Queen Alexander Portsmouth, they have a Specialist Nurse there who is quite simply wonderful. Plus a bowel specialist ward.
I've heard excellent things about St Marks-its where the cutting edge treatment is developed.
I was in a bit of despair until a few weeks ago until I found this website, its fair to say that its become my support group. But for people who dont know of it, as you say there isn't much out there sadly.
Rgds
Grant

1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection

Been on Azathioprine & Pred

Currently on Entocort 3mg every other day
Humira 40mg every two weeks
Calcichew
Pentasa 4gm daily
3mthly B12 Jabs

 

[billyjoel]

I spent my first three years in denial! It took a lot of reflection on my part to admit that I had a chronic disease.

 

[ruthyp]

i see, that is a tough position to be in, my dad is severly depressed (he has tried suicide a few times in the past year, which im sure is a contributing factor to my flare) but i understand there are certain close family that you sometimes cant talk to. And yes, this forum is a life saver, like billyjoel sad, i also was in denial and this place has helped me open up about. i hope you continue to get the support you need from this forum. I wish you all the best!x

 

[akanderson]

I know what ya mean. I did great for a month, I was gaining a little bit of weight back, getting color back then, BAM. I got hit with pain, weight loss and extreme exhaustion. Got a few good days this passed weekend then today, BAM again. My mind is so worn out of the emotional battle. I feel even more tired now from being so emotional. It does seem like a constant battle. So I totally feel ya. But I just cling to the hope that one day, I'll feel closer to normal soon.
Hugs for ya.

 

[mom2twogr8tkids]

Crohn's is tough and we all get stronger each day believe it or not. The more info you have about crohn's the better off we all are. It's all about seeing what works best for us. We all have the same disease but not all of us have the same symptoms or go thru the same things on a day to day basis. This site helps alot. I wish I would have found it long ago. But unfortunately like *Billy Joel, I lived in denial for a very long time. Try to look at all the positive things. God Bless!