My story

[aboarna]

hi,

I was getting ready for a second cycle of IVF when I started to feel funny in my tummy. So I raised my concerns with my GP. After she put together all the symptoms I was having (sharp pain in and around my belly button, stomach bug symptoms with vomiting and cramps), she sent me to do a colonoscopy and an endoscopy.

After the colonoscopy the gastroenterologist told me that I have Crohn. On top of this Crohn, after he asked me to do the tuberculosis test he said that I have latent tuberculosis (inactive, the bacteria is asleep but because of all the medications needed for Crohn I have to treat this latent tuberculosis as well).

I felt like I need another opinion so I had another colonoscopy (done by another gastroenterologist). The second gastroenterologist told me the same thing.

So I have been diagnosed with Crohn in my terminal ileum in June 2011. I started to take Pentasa and I tried again to get pregnant (after my gastroenterologist told me that it was ok).
Again I had a miscarriage, chemical pregnancy. (my first try was the same)

In December 2011 I ended up in hospital with bad flare-up ("exacerbation of Crohn").
In hospital I have been given prednisolone. By February I was off prednisolone and on Entocort and Pentasa.
I started to feel a bit better.

Meanwhile I started the treatment for latent tuberculosis. I had to stop it after 7 months because the liver results didn't look very good. No complications from this treatment, everything got better in time.

In August, I started to see a chiropractic (a Chinese doctor) who gave my Chinese herbs and I did acupuncture as well.

The last blood results look all good. Inflammation is 3, White Blood Cells in normal limits.
After the colonoscopy today, it looks like I'm in remission.

When I had the first colonoscopy, they couldn't get through the terminal ileum because of the inflammation. Today they didn't have any problem. I have a small stricture at ileocecal valve (polypoid appearance) and the ulcers are healed.

I have this strange discomfort, pain on the back, under the right rib and my gastroenterologist decided to have only 3 mg of Entocort a day and to stop Pentasa in case the pain and discomfort I'm having are just side effects of the medication. My gastroenterologist doesn't understand why I'm having this pain and discomfort.

I have to mention that I did an ultrasound for gallbladder, liver, kidney, pancreas and no problems. They all look good.
Hopefully, by reducing the dose of Entocort and by stopping Pentasa, these side effects will go away.

To sum up, I think acupuncture, Chinese herbs together with Entocort and Pentasa put me in remission.

all the best,

 

[muppet]

I'm glad you're feeling better, relatively!!

How scary about the tuberculosis! Have you ever been vaccinated for TB? I'm guessing not, but I'm curious how they'd distinguish between a previous TB vaccination and a latent infection with TB.

I'd personally be a little nervous about stopping pentasa and taking only 3mg of Entocort, that's a very small amount of maintenance to keep a remission going. If it works, that's a pretty great thing, though!

While Pentasa does work on the ileum, I wonder whether the time-release may be "missing" the target for you by a bit and that's why it wasn't as effective as it might have been. Have you tried more systemic meds like 6MP or asulfazine? They carry more side effects but might treat your ileal inflammation better.

Once in remission, the value of meditation and meditative aids (something I tend to lump alternative therapies in with quite often, frankly) definitely cannot be overstated.

How do second opinions work with the healthcare system in Aus? I was told by another fellow from Australia just the other day that they're difficult to get.

Thanks for sharing!

 

[David]

Welcome to the community! Thanks for sharing your story. I wish you continued and even increased success

 

[aboarna]

I have been vaccinated for TB but when I was a baby probably. The first gastroenterologist asked me to do QuantiFERON-TB Gold (blood test for TB) which came back undetermined. So, in this case and knowing that I have been vaccinated when I was little, I had to do the skin test which came back positive. So, the chances that I have been contaminated with TB were high.
Anyway, I will never know for sure if I had it or the results were induced but the TB vaccine.

I will follow up with another set of blood tests to find out how my body responds to only 3 mg of Entocort. I presume that if I will get inflammation again I will have to take 9 mg of Entocort and Pentasa. Or, when these symptoms go away I might have Pentasa again (for peace of mind) Hopefully I'm going to do Ok with just 3 mg of Entocort. That will be perfect considering that next year I'm hoping to try again to get pregnant. Fingers crossed!

I haven't had any problems to get a second opinion. The only problem was that I had to wait for about 2 months to get to see someone else. Apparently it's always a waiting period to see a specialist.

thanks for your support

all the best,

 

[aboarna]

hi,

I felt very sick last night. I don't know what to blame, Crohn or gastro.
The problem is I'm taking just 3 mg of Entocort. It's hard to get in touch with my GI on a weekend. I'm thinking to take Pentasa tonight. I don't know what to do and I really don't want another night like last night.

Could it be possible to have a flare-up so soon. I reduced the dose of Entocort to only 3 mg about a month ago and I stopped taking Pentasa almost 2 weeks ago.
Everything was looking good a week and a bit ago when I had the colonoscopy.

thanks,

 

[David]

Hopefully it isn't related to the Crohn's, but I think that has to be the primary suspect. If you're only on 3mg of Entocort and nothing else, yes, it's possible to flare again that soon.

 

[aboarna]

thanks David,

Crohn comes first in my mind too whenever I have any symptoms.
at least that's something to blame for every symptom I have

I saw my GP today. She wanted me to do a urine test so she could eliminate other things. The problem is that I'm very tender in the pelvic area.

And she said to take Buscopan 2 times a day and she will see me tomorrow again.
If the pain is still going to be there she will call my GI to see if I can increase the dose for Entocort to 6 mg a day.


currently on 3 mg of Entocort

​

"My sun sets to rise again". Robert Browning

 

[aboarna]

The urine test results show blood in urine but no bladder infection. They don't know why.
I'm on 6mg of Entocort from today after I talked to my GI on the phone.
The pelvic pain is lessened in the afternoon.
But the problem is still the right pain which is on and off.
What could cause this pain.
My GI doesn't think that the right pain is caused by Crohn's What else can be?

currently on 6 mg of Entocort
"My sun sets to rise again". Robert Browning

 

[aboarna]

Hi,
I'm still on 6 mg of Entocort and I'm doing ok. No symptoms whatsoever.
I had a bit of beef last night and it's definetly a NO.
I've started to take multivitamins for pregnancy (I' m hoping to get pregnant next year ) but I had to stop them because I was having diarrhea probably because of Iron.
I was taking 2 after diner. I'm thinking to try to have one in the morning and one in the evening to see what's happening. Maybe in this way I will be able to tolerate them.
Has anyone had any problems taking mutivitamins for pregnancy?

Wishing you so much joy this Christmas and in 2013.

 

[aboarna]

hi everyone,

After a beautiful Christmas holiday in Phuket , away from all the busy day to day life, I did some blood tests.
I'm still on 6 mg of Entocort, Krill Oil, Vit D and Vit for pregnancy.
I'm feeling ok, Crohn is still in remission. CRP is the best result I've ever had 0.9, no sign of white cells activity, all behave pretty good.

While being on holiday, I've noticed that I was losing lots of hair. So, when I requested blood test, my GP also asked me to do some test for the thyroid (because of the hair problem).

The test for thyroid antibodies came back positive which indicates Hashimito's disease.
Thyroid stimulating hormone test - TSH is normal.
I'm going to see a endocrinologist in 2 weeks.
Has anyone of you been diagnosed with Hashimito's disease? How do you manage it?

regards,