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05-26-2010, 03:09 PM   #1
SLA79
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New to Crohns Disease

Hi everyone

I have just found out that I have CD. I'll tell you my story as someone out there may be experiencing the same symptoms as I am and it may help?!?!?

Back in 2008 at the age of 28, I gave birth to my gorgeous little boy, as you can imagine things were hard ( sleep deprivation etc etc ), my son was 3 weeks old when he was rushed to hospital to have an operation which he has fully recovered from now. From after I had my C-Section I was passing rather large blood clots so I was put on a high strength antibiotic called Augmentin. From that day I was suffering with severe diahrea, this went on for many weeks, my doctors kept telling me it was because of these antibiotics. I went to the doctors again and they did all the blood tests and stool samples, testing for coilitis, celiacs disease, crohns and any other possibility. All of these tests came back negative apart from me being aneamic so I decided to go private and try and get some sort of resolve as I knew there was something wrong.

I saw an amazing consultant who did a colonoscopy and ultra sound scans ( because of just having a baby they needed to check it wasn't my womb, and also to look at my other vital organs ). My colonoscopy came back clear showing nothing was wrong at all, so it was just put down to stress and my body rejecting the antibiotics.

Miraculously my diahrea ( which feels like acid coming out ) which was happening after me swallowing 1- 2 mouth fulls of food and then end in me lying on the floor dealing with my cramps suddenly went away after 20 weeks of pain.

I was back to normal, no cramps, no bad poo's nothing. I could eat curry, fruit, beans what ever i wanted when i wanted!!!! Hoorah!!!

Until february 2010. It came back and this time its worse. I went back to my consultant who performed another series of blood tests and another colonoscopy. My consultant thought that i was suffering with microscopic colitis, so he went in for the kill and took loads of samples as this is where you have patches of infection in your bowel and its hit and miss to actually get a sample that is showing the infection, and you can not see it on the bowel lining.

My results have come back clearly showing I have Crohns Disease, and I have it in my small intestine. On friday this week I will be going for a MRI scan so he can examine my small intestine further to see what damage has been caused and we will take it from there.

I have been prescribed a course of Prednisolone and Pentasa, I am still suffering greatly, but in a way I am relieved I have an explanation to my illness and that I managed to get it resolved relatively quickly compared to some of the other people on here. My side effects from the tablets seem to change each week, some days i have heartburn, other days i am that tired it feels like i have passed out and am completely unaware of anything that is happening around me. All this inbetween having to dart to the toilet every 5 mins.

I have a quick question as well about my medicine. I started Pred 30mg a day, three weeks ago. This was prescribed to reduce by 5mg a week tapering to nothing. As soon as I started the Pred it immediately calmed down the diareah (not the cramps tho) meaning that i went to the bathroom every couple of days - sorry to be crude but this visit usually consisted of some solid motions then (once the cork had popped!) diareah followed. I was reasonably happy with this and so was my consultant. He then started me off on Pentasa (as I guess he thought we were getting results) but since getting down to 15/20mg a day of Pred i'm back to going 4-6 times a day straight after meals. Do you think I need to go back to a higher dosage of Pred and taper slower? I will ask my consultant this but I am not due to see him for another week. Any advice would be great!

Thats my story so far, I hope if anyone has the same issues that this may help you? And if anyone can offer me any advice - all would be greatly received.

Thanks for reading this and apologies if there are any typos!
05-26-2010, 04:42 PM   #2
Jennifer
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Welcome to the forum!

As for your question there could be a few possibilities but I think it would be best if you called your consultant. You don't have to wait to physically see them. You can always call and leave a message with your concerns and they can adjust your meds over the phone at any time.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
05-26-2010, 07:15 PM   #3
ataloss
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welcome! and congrats on finally getting some answers.....it's nice to know what it is you are battling. I also think you should call the doctor and discuss with him whether you should go up on the prend. don't wait for your apt!
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05-26-2010, 08:29 PM   #4
crohnicaly stinky
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Welcome SLA79,

I have had crohn's for 17 years but I was dx only a couple of weeks ago. I guess maybe it was alwasy chron's but maybe not I don't know. Anyway I'm still new dealing with it and all I can say is there is lots of good information in here and great people. So good luck and I hope you feel better soon.
05-27-2010, 12:57 PM   #5
BLM
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Yes, I think your body is still in an active state of disease or having a flare as we call it. I found out that if Im having a flare and try to come off meds too soon, I get bad again. My pain increases, Im going all day, I get mouth ulcers, and rash on my arms....so I would suggest going back up on pred and staying there for few weeks and then try to come off again. Welcome to this wonderful world. I too am newly diagnosed and your story sound similar to mine....I wish you luck!!
05-30-2010, 12:16 PM   #6
Astra
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Hiya
and welcome

Firstly, be aware that augmentum and penicillin or any anti biotics will cause severe D.
If it was me, I would up the Pred to 40mg for a month then taper to 30mg for 2nd month, then taper by 5mg each week til zero, for Pred to blitz the inflammation, it's needs high doses for at least 2 months, this worked for me and overall I was on it for 4 months. I had tapered too quickly and when I got to 15mg all hell broke loose! So I upped it, and started again, and it worked. That's the beauty of this drug, being able to up it. Best to check tho with doc first.
I'm on Pentasa too, it's great as a maintenance drug to ward off future inflammation, and retain remission, but no good on it's own if you're flaring, so you will need to discuss with your doc about an immuno modulator such as mercaptopurine or azathioprine or a biologic such as Remicade or Humira when you come off the Pred. be sure to take calcium with the Pred too, cos of bone density issues, and take your Pred early in the morning cos of insomnia side effects you may have.
good luck, hope everything works out for you, any questions, just shoot!
lotsa luv
Joan xxx
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Joan

Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




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06-03-2010, 03:49 PM   #7
SLA79
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Hi again

I think i sent my email before i had finished typing - doh!!!

The drug my consultant has advised me to take is called Azathroprine so long as my blood is ok

Once again many thanks for your response you have been really helpful!!

Loads of love

Sarahxxxx
06-03-2010, 03:56 PM   #8
SLA79
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Hi

I think I must have deleted my original email - oh the wonders of technology and me!!!!!

Thank you for your response you have been most helpful!!!! If you don't mind I have a quick question with regards to taking pred. My consultant has advised me to up my dosage to 40mg a day reducing down by 5mg each week till I get to zero - you mention taking your pred early in the day to help you avoid insomnia - do you take yours all in one go or do you spread it out over the day?

My consultant has also advised me to take Azathroprine ( subject to my bloods being ok ) and also to take pentasa 8 tablets each day and we can see how it goes from there!!!!

How do you feel now as you have obviously had this for some time now, do you feel as normal as you can do or are you still in pain on a daily basis?

Thank you once again for your response

Sarah

xxxxx
06-03-2010, 03:58 PM   #9
SLA79
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Many thanks for your response - I hope you feel better soon too - heres to Crohns clink clink!!!!

xxxx
06-03-2010, 04:28 PM   #10
Astra
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Hi Sarah

good luck with the Aza, I was allergic to it!! gave me hives.
The norm is to take Pred all at once not thro the day. I took mine about 6.30am then went back to bed! The earlier you can take it, the better nights sleep you'll get, insomnia is a bloody killer! I was up ironing and watching crap films at 3am! It does get better tho, once you taper.
talking of tapering, when you say 40mg then taper by 5mg each week? If you taper too early, you may get pains back, the best way to do this is stay on 40mg for at least a month, then 35mg for another month, then start tapering by 5mg each week, might take 4 months to do this, but it will be worth it.
I've been taking 8 Pentasa (2 x 4 a day) for 5 years as my maintenance drug and I have no pain at all at the mo, I'm doing well after being quite ill back in Jan and on Pred, which healed me very well. I'm also on Entocort (mild steroid) for 2 months cos of joint pains, and this is working too, no pains
good luck Sarah
xxx
06-03-2010, 09:25 PM   #11
Entchen
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Hi, Sarah -- Just wanted to say welcome to the forum. Crohn's must be such a challenge when you have a toddler to race after.
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Dx: Moderate Crohn's in 3 locations
Doctor's orders: 200 mg Imuran
Have used: 4500 mg Pentasa, 4500 mg Salofalk, Flagyl, Cipro, 50 mg Prednisone, 9 mg Entocort.
Turned my Crohn's life around: ginger for nausea.
Claim to fame: "loopy and floppy" colon
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