New to the Forum- My story

[Margie12]

My name is Margie.

I'm so glad I found this forum where I can ask questions and also know more
about the medications and surgeries.

I was diagnosed with an inflammatory disease, but the doctors
didn't know which one it was, Crohn's or Ulcerative Colitis.
They thought it was irritable bowel syndrome at first.
In 1994 I had peritonitis, but it was difficult for the doctors
to know what has caused it, because of the complications I had.
At that time they did a bowel resection, because a small segment nearly perforated.

Everything went wrong in 2005.
I was diagnosed in 2004 with narowing at the side of the sigmoid colon.
In 2005 I had a complete bowel obstruction where they did an urgent surgery
and left me with temporal colostomy.
They removed the narrowed segment aftr 3 months and the doctor joined the 2 parts of the colon.


This year when the gastro did a barium X-Ray of the colon he saw that
the colon descendens is narrowed, because of chronic bowel inflammations.
suggesting Colitis. An internal specialist told me that Crohn's- Colitis is the one I have, because of the characteristics of the inflammation I have.
That was in July.
I was on Prednisone that kept it under control, but because of the many complications with Prednisone the doctor suggested for me to stop taking it.

Now I'm taking Asacol tablets- 3 times 2 tablets a day.

That's my story in a nutshell.

Thanks for reading.

Margie

 

[CDDad]

Hi Margie,
Sorry about the tough time you had - and maybe are still having. I'm surprised that you are not on a heavier duty medication like Humira, Remicade, or MP6. Asacol alone sounds a pretty mild approach for such severe disease.

Is the internal specialist specialist the only doc you see? Do you have a GI doc?
And welcome to the forum!

 

[Nica]

Hi Margie,

Welcome to the forum! I have crohn's colitis as well. It took several years and 2 GI docs to get an accurate dx. They said UC for the first few years.


Is asacol working for your symptoms? Is your bloodwork coming back normal? If not you may need to look into other meds with your doc. I agree with Joe that it seems like you are under treated right now.

 

[Margie12]

Need suggestions

Hi Nica and Joe,

I'm so glad with your response to my first message.

The internal specialist treated me with Prednisone and Methrothexate, but the complications I had, incl. drug induced Diabetes, the doc suspended both medications.

After that everything went downhill with active flare for almost 3 weeks now.

I also had several inflammations, because of Vasculitis.

The GI doc didn't want to give me any medication on my last visit, but after I told him that the internal specialist gave me Asacal sup he said that I need the Asacol tablets to take effect in stomach and small bowel.
That's how he gave me the Asacol tablets.

There isn't many choices of GI doctors in my country.

I went to see a surgeon last Friday.
He said that he suggest me to remove all the colon and make a hub to the small bowels. He said that if after 3 months I don't have any improvement with the medications that the procedure of taking out the colon may be the
way to have improvement regarding the pain and inflammations.

I'm not sure that that is the right way to go.

Do you have any suggestions?

Thank you very much.

 

[Nica]

Margie,

The thing about crohns is surgery usually does not fix the disease, it can cause remission for a little while but the disease tends to come back in the parts of the intestines that are left.

I am not certian but I think your diabetes came from the prednisone, not the methotrexate. Options for meds that I am aware of are Methotrexate, immuran, 6mp's, Entocort (its a steriod that stays in the guts mostly) Remicade, Humira and Cimzia.

I am not sure I agree with your GI doc. Asacol does not break apart till its in the small bowel and colon, so your stomach would not be getting the meds. Pentasa may be a better option for you.

I am not a doctor, or trained at all in medicine so take this advice for what it is, someone who has the disease, has been on LOTS of meds for it and tried to learn a few things along the way.

I would do some research on the internet for IBD specialists in your country. At least get a second opinion before doing anything drastic like surgery.

Wish I could help more.

 

[Margie12]

Thank you very much, Nica.

The narrowed segment of the colon has lost most of the flexibility, because it has lost haustra so as mentioned in the Colon barium X-ray report
I had to search for it on the internet, because I didn't know what that is.
I found the definition in wikipedia online

I will be looking for another GI to get his opinion.

I don't know, but I think that Pentasa isn't available here in my country.

I will find out more about Pentasa and will let you know how it is going.

Thank you so much.

 

[Nica]

Sure thing Margie, If I can be of any other help please feel free to ask.