My story- Hello

[Smiley]

Hello to all

I am new to the forum and stumbled upon it when I was looking for the effects of Aza on pregnancy.

My story starts last September 2010 when I started having pain after eating. Following a myriad of tests nothing was found and I just started losing weight and eating less and less. I found myself quite drained of energy and spent an average of 16 hours a day sleeping. My 'will to live' seemed to have disappeared and my GP thought I might be depressed. Luckily she gave me a few weeks off work to sort myself out.

It was during this time that I had to do a lot of soul searching, why I was depressed, felt like doing nothing but sleep, didn't eat much- a true sign that something was wrong as I simply LOVE my food!

I didn't have diarrhea, vomiting and thinking back I regularly had cramps, wind and on 2 occasions severe pain which we had thought was IBS!

November 5th I wake up at 3am with the worst pain I have ever felt, and I have had a herniated disk which I had to be operated on, also not a good feeling. After visiting the Emergency unit of the hospital 48 hours later (as I thought the pain would pass- in hindsight that was silly) they sent me home with gaviscon and a recommendation letter to do a colonoscopy!

It was now Monday, 8th November and my then fiancé (now hubbie ) refused to see me in that much pain and we booked a private consultation with a gastroenterologist! I had an appointment that Tuesday, and Wednesday I was admitted to a private hospital- Diagnosis: Crohn’s disease! I went in at 2pm and at 6pm I was being told that it was more than a flare up, my bowel was perforated, leaking into my body and I needed emergency surgery if I was to make it to the weekend!

Surgery was a resection and an ileostomy (quite traumatizing as my grandfather had died of colon cancer and the thought of wearing the bag freaked me out completely! The doctors had tested to see if I had cancer and we had to wait for 5 days for the results- my brother and I couldn't even fathom it- as we had seen our father figure -favourite Grandfather- die a slow torturous death and we feared the worst!)

Good news - No cancer- yay!
Bad news- life will never be the same....I now have Crohn's disease- I will not be able to just eat what I want when I want it!
Back to the good news: no cancer!

A month later I was returning home, with a bag, 15kg lighter and a whole load of painkillers!

I have since removed ‘stoma’:thumleft:and have put some weight on. When my consultant told me that he suggested Azathioprine as a treatment, my next ordeal started!

It has now been 9months almost to the day. My MRI was perfect, my colonoscopy just showed a little inflammation near where I had the resection. I feel fine, have started cycling again ( I commute by bicycle to work- 15 miles return) but I go through Kensington Park and Hyde park which is a lovely ride!
Went to see my consultant last week and he still wants me to go on Azathioprine....

I want to try again for a baby in January, and I don't want the drugs, but I understand that a flare up during pregnancy would be the worse out of the 2!

So there is my very long, STORY!

Thanks for reading...

Smiley

 

[raindrop]

Welcome, Smiley. I'm new to this forum, too. I'm sorry you have this disease. You husband was looking out for you, getting you into the private GI doctor. Thank goodness!

I think your doctor wants to prevent another perforation from sneaking up on you, and that's why he wants you to be on a medicine to control the disease and prevent it from slowly or quickly doing damage to you.

You'll find there's a whole section in this site on pregnancy (this is an awesome forum!). I had a healthy, but underweight, baby while I had active Crohn's and chose not to take any meds, but that was a long time ago, and there's more information about meds and pregnancy now. I also adopted my second child.

Again, welcome. I'm sorry you have Crohn's, but I'm glad you found this great source of information right at the beginning of your illness. Knowing there are people who get what you're talking about, who understand the terminology and the suffering and the victories makes a huge difference in a person's happiness while living with Crohn's. Good luck to you and your husband and family (as the precious babies come).

 

[Smiley]

Hi Raindrop,

Thank you for your kind words. Yes it is good to have found this forum and be able to share and read of others experiences- makes all the difference to be honest...

 

[scottmyster]

HI Smiley, welcome to the forum. i am sorry about your diagnosis of crohn's. but, life is not over. i have had now for 21 years and in remission for 15 years and now it has flared up again. but i am on predisone and other meds to control the inflammation. you can live a normal life. Just watch your diet in matter of fact get yourself a diary and mark down the foods that cause you discomfort and mark down the foods the don't. Keep track of your bm and get plenty of rest. best wishes.:hang:

scott

 

[Astra]

Hiya Smiley
and welcome

Wow, that was a quick diagnosis! And you were very lucky.

'Bad news- life will never be the same....I now have Crohn's disease- I will not be able to just eat what I want when I want it!'

Just wanted to say, this is NOT true! ^

Yeah, you'll have really bad days, then you'll have great days, this disease is an unpredictable bitch!
But..... don't for one moment think your life is over cos of it, cos it's not.
I nearly died last year, long story, tons of steroids and meds, hospital, 6 months off work, blah, blah, blah and........
Now I'm in remission, no pain anywhere, and eating whatever I want when I want.
Take each day as it comes, slowly, and you'll be ok. AND.. take your meds!
Good luck and
lotsa luv
Joan xxx

 

[archie]

Hi Smiley what a journey i'm sure your head was turned waiting for your diagnosis and recovering from major surgery, these things are sent to try us!!!!! I'm so glad you've recovered really well and your energy levels are good.

I understand your predicament about meds I also had a perforated bowel although not nearly as drastic as yours but none the less had surgery and have been great since without meds (well the occasional grumble just to let me know the CD is still lurking). A recent scope has shown ulcers at the resection site and they are hinting at maintenance meds which I really really don't want. I would rather wait for another 6 months and get another scope to see if it has worsened etc etc. Anyway i've to see the consultant on wed so will know more then.

There is a pregnancy section and there might be more advice there regarding meds etc and pregnancy. My previous GI had asked if I was planning on any more children and if so he wasn't going to put me on Aza, however I didn't research it at the time so can't advise sorry. All the best anyway

 

[Smiley]

Dear All,

thank you all for your words of encouragement and support! What a big difference you have all made to how I see 'myself' with Crohn's...

I found out yesterday that I am pregnant! Yay! need to talk to my doctor again as this changes things..but am soooo happy!

May you all have a great day!!!!

 

[Astra]

Aw Smiley, that's wonderful news!
Congratulations
take care
xxx

 

[Tay]

Hi Smiley, congratulations on your pregnancy - great news!

Just for your information - I lived in London for a while and was treated at St. Marks Hospital under Prof. Leonard-Jones. They have a particular interest/expertise in the treatment and management of Crohn's.

I agree with Astra - I have nearly 'croaked it' on 2 occasions (over the last 35 years) but brought back from the brink by a very good, no brilliant, physician - I have also had some superb times and enjoy a successful career (but wouldn't mind retiring now! lol), and have an amazing wife.

Enjoy your pregnancy.

 

[Paul Cronk]

Hi Smiley,

Terrific that you are pregnant and welcome to the forum from another new member who just found out how supportive this can be.

Not that all these near death experiences are very cheerful, but everybody seems to have this disease in a different way and with differing degrees of severity, so the message is clearly that people get through with love and support.

Good luck.

 

[Tay]

Love and support are important but not enough - i have had Crohn's disease for 38 years and regardless of severity, in my experience good medical and surgical input is vital. All doctors/surgeons are not the same! It is of paramount importance that you engage with your GP and have a GI consultant or surgeon who has an interest in Crohn's disease. The approaches to the care and management people receive can vary significantly.

 

[Paul Cronk]

Hi Tay,

I totally agree. Before I was diagnosed I had a full coloscopy and they took out some polyps so I thought that was it, until I continued to feel unwell for another six months. Only when I eventually went back to the GI man on my own account did I learn he wrote a letter to my doctor after the coloscopy recommending further tests and giving a preliminary Crohn's diagnosis. Meantime my doc had not even read the letter and given me some anti-depressant pills of which I took two (2 only) and freaked out mentally, oh so close to a nervous breakdown.

Soon as I got on Pentasa it was manageable and I changed my doc to one who is switched onto Crohns and the GI man is good too. Now I have a rheumatologist who recognises my back problems as Crohn's related so we have the team in place.

All this is under the French system so god knows how much this costs Crohnies in the USA unless their medical plan is pretty good.

Anyway, the positive message in the end is that persistence, or maybe fortitude is a better word, pays ff so all keep at it.

 

[Astra]

Yes Tay, I totally agree too!
My GP saved my life last year, without his home visit, I would be dead.
I had just moved house, also out of the boundry to my old GP. I didn't know I had been struck off the register!
When my sister phoned them they didn't want to know!
With help from PALS (patient advice liaison services) my sister found a new GP, told him that I was screaming in agony, he came out to me, phoned an ambulance, and saved my life!
When I eventually left hospital I went to see him, gave him a big kiss and hug and he's been there for me ever since.
I can't stress how important that is to me, a GP who has an interest in Crohn's and spotted the signs of an obstruction and peritonitis.

 

[archie]

congratulations thats brill news and I totally agree with everyone else I feel really at ease with my CR surgeon and that makes a hugh difference, he really does know me inside and out, probably more inside though!!!