Crohn's - Learning Curve ?

[np4175]

Hello Everyone ~

I am a 55 yr old female diagnosed w/crohn's August 2010. Currently taking Entocort (3 pills am) and Amitriptyline (pm). Over the last 4 weeks I've noticed that every other week I need to take Immodium or Librax for diarrehea and/or pain? I've also added Benefiber to my morning tea.

I have had digestive issues for 20 years - Irritable Bowel Syndrome but found the Librax really helped clear up a flare.

Would love to hear comments on the intermitent diarrehea and pain on my right side. I'm to stay on meds for 2 more months w/assessment then. My diet has gone from eat just about anything to very restricted.

Look forward to meeting you.

Tks!
Nancy

 

[Cat-a-Tonic]

Hi Nancy, welcome to the forum. I've been on the same meds as you (I just finished a round of Entocort which started in October, and I take 25 mg of Amitriptyline every night). To answer your question, yes, I also still experience ocassional lower-right quadrant abdominal pain and diarrhea. If I eat the wrong thing or if I get too stressed, I also experience things like nausea and acid reflux. Entocort is a pretty good med, but it's not as strong as other steroids like prednisone, so it's pretty common to still experience some mild symptoms while on it.

Some of us can't tolerate much fiber. Have you noticed a difference since adding fiber to your tea?

What's your current diet like? Have you tried the low residue diet? That might help until you figure out more things that you can eat. There's an entry in the "wiki" section of the forum that explains more about the low-res diet. Basically it consists of soft, easily digestible foods (some of these may not be applicable to you depending on whether or not you eat things like dairy or gluten): soft white breads, baked chicken or fish, soft cheeses, pasta, rice, potatoes without skins, etc. I hope that helps, and again, welcome!

 

[np4175]

Tks!

Thank you so much for your reply. It's amazing the information I get from these sites. I wasn't using the fiber and then started back up. Perhaps I'll use it less often. Just cannot stand running to the bathroom. This is all new to me and have had a difficult time adjusting emotionally?

I currently am eating a soft diet but miss dairy - sour cream, cottage cheese, and cheese. Especially cheese. I'm trying greek yogert too.

If you ever think of other pointers...please send them. As I said this is a learning curve for me.

Nancy

 

[slightlysilly]

Hi Nancy!

I just joined up today. I was diagnosed with Crohn's back in November. My doctor told me to stay completely away from fiber for the time being (I guess while in flare). I was thinking that I NEEDED fiber so I just automatically added benefiber to my morning beverage. The GI squashed that pretty quickly.

As for the dairy. I use lactaid for milk, and I take lactose pills before having any dairy. I have found that it doesn't make life perfect but the lactose pills really do help. They can be found over the counter in a chewable or swallow form. Going back on dairy definitely made me feel like less of a freak.... although going to Subway and skipping completely over the vegetable person gets a lot of looks.... that and... the white bread thing... who has white bread anymore?

Hope that helps!

Cheers!

Maura

 

[Astra]

Me! I have white bread!

Hi Nancy
and welcome

I'm on Amitriptyline too and just finished a round of Entocort.
I'm also on a low res diet which is hard cos I love sugar stuff
But if my d is really bad I take Codeine Phosphate for a while, it works.
Good luck
Joan xxx

 

[np4175]

Hi Joan,

It's amazing what I"m learning on here. What is Codeine Phosphate? Can you define for awhile? Yes, I like cookies, cakes, etc. Having a difficult time trying to find sugar replacements? Also notice your taking CalciChew + Vitamin D x2, and Cod Liver Oil with Vitamin D. When I was trying to take calcium, had stomach pain and landed back in the hospital - ho hum. What does the cod liver oil do. Are you finished w/the entocort? Define a round please?

tks so much !

 

[Astra]

Hiya Nancy

It sure is a learning curve! We have so much to learn, it takes ages tho!

Codeine Phosphate is an opioid, a mild painkiller, but is also a cough suppressant and has anti diarrhea properties.
In treating diarrhoea, codeine works by acting on opioid receptors that are found in the muscles lining the walls of the intestines. This reduces the muscular contractions of the intestine (called peristalsis) that move food and faecal matter through the gut. The speed at which the gut contents are pushed through the intestines is therefore reduced, allowing more time for water and electrolytes to be reabsorbed from the gut contents back into the body. This results in firmer stools that are passed less frequently. And it works! But, it can be habit forming and addictive, but in the short time, it will be fine. You can get milder codeine in Tylenol 1, 2 , or 3 but Codeine Phosphate is stronger and only on prescription.

My round or course of Entocort was 9mg for a month, then 6mg for a week, then 3mg for a week, that's it.
The usual for Entocort is 9mg for 8 weeks, then 6mg for a month, then 3mg for a month, or 3mg up to 3 months to maintain.

I don't know if the fish oil is doing anything to be honest, I just take it cos I was told to! My 'safe' biscuits are McVities Hobnobs and Rich tea, and my 'safe' sweets are Fruitella! Don't have any D with them.
I only take Pentasa now and seeing gastro on Monday to confirm remission, fingers crossed!

xxxx

 

[endibd]

My diet has gone from eat just about anything to very restricted.

My advice is be careful about taking diet advice from a Dr. and that you screen any dietitians you listen to for success dealing with IBD. Not just that they see people with IBD but that they have effectively been able to help those people reduce or get off their medication through their diet advice. It's possible, don't settle for less. Get their philosophy and what they think is possible, and don't settle for second rate.

I suggest you do your own reading on diet.