LC question

[NicolesMom]

Hello:

I want to thank everyone for your continued support as my daughter finds her way through this illness. I wanted to ask a couple more questions that have come up and I need some advice.

Nicole has continued to have what she calls "gut pain" in the same exact spots in her large intestine. One area on the right side and another area on the left side. Her PCP says that her pain level and area of pain has not changed since he first started seeing her. Is that normal or what typically happens with LC even after being on Asacol almost two months?

Also, she has developed stomach pain, which she had before, it went away and returned again within the last two weeks. She called her Gastro who told her to double up on her Prilosec and take Tums and see them in a week if she is not better.

This frustrated her since this was a new pain, so she went to her PCP for help because she could not get in to see the Gastro. He is not sure why she has the stomach pain again. Suggested she follow up with the Gastro as requested.
Is that something that people with LC suffer from consistent stomach pain?

Her PCP concerned about her continued overall pain put her on Prednisone 40 mg for 4 days and tapering her (down a pill after each four day sequence). She felt pretty good on the 40mg, but as soon as she dropped to 30 she had more pain in the large intestine again. She is still on Asacol as well.

When my husband was in a flare from his UC they gave him high doses of prednisone by IV which would settle things down and he would taper off at home with pills. I wonder if that helps people in a flare with LC? Has anyone tried that before?

On a side note, while shopping this weekend, she said something very important to me with regard to her acceptance of her condition. She commented to me that she wonders if she is going to have to alter the way she eats for the rest of her life. I commented that she may have to. Instead of a comment or frustration, which she usually made, she said nothing. I think she is accepting things a little better. Besides, she is very tired of oatmeal and chicken soup which are what she is living on a lot of the days.

I have introduced her to Whole Foods and we are going to go back there again to look up some of the gluten free food options that are available to her. Her egd biopsy was negative for Gluten sensitivity as well as the blood test. But she is willing to try anything at this point.

Thank you in advance for everyone's continued support. You are helping her indirectly as I tell her all about the posts that I have written. I hope she is on and reading the site as well.

Sharon

[JLH]

I hope she is, too.

I think she needs to give up oatmeal because of fiber and possible cross contamination.

When she finds that diet stops the D and pain, she'll know it is all worth it.

[Polly]

Good Morning Sharon! And, Hi Nicole, if you are lurking

Pain anywhere in the abdominal area can certainly occur along with MC (which includes both LC and CC). A word of caution : Prilosec is one of the drugs that been implicated in initiating MC and/or making it worse.

I don't recall anyone here having IV pred, but some members have been given a course of oral pred that has then been tapered. It can be effective in quieting down the inflammation more quickly, so that safer meds/diet can then be effective.

Has your daughter considered the enterolab tests for gluten and other food intolerances? I think it would be important for her to know her specific intolerances, especially if she is contemplating diet over the long term. Many of us have had blood tests that were negative, only to discover severe intolerances with stool testing. My gluten blood tests were negative, yet I am highly sensitive to even the smallest amount.

Has she tried Entocort? Asacol did nothing for my MC, although is has helped some here. If it is not helping her, then Entocort would be preferable to full-blown pred, IMHO, since so little of the Entocort is absorbed systemically.

Love,

Polly

[takef586]

It seems that there are many "forms" of LC. Most people with intense D have found to be strongly gluten or casein intolerant, so making the stool test for multiple intolerances could be of help. In my case, the LC is manifesting itself primarily through pain, and after several months of diet experimenting, I have come to the conclusion, that the primary source of pain in my case is ANY quantity of fiber, even the smallest. I believe she should first try to verify the intolerances, then consider the diet without any offending foods, and without fiber. Only afterwards, if the pain goes away, can she reintroduce fiber to see how things go, but in my case the healing proces is very slow, as I cannot take entocort or similar drugs. It could take years, before she could eat "normal" again.

[NicolesMom]

Thanks so much for the replies so far.

Nicole has not tried Entecort as her insurance will not cover the drug.

With regard to the comments about oatmeal, that is the one thing that does not give her D or pain. Yes, it is full of wheat. Interesting isn't it.

She has a lot to consider moving forward.

I appreciate all of your wonderful helpful comments.

[klhale]

Nichole needs to get on Entocort. She is not getting well on Asacol. I had pain so bad in the end I had to be put on Vicodin and Asacol did nothing for me.

You can order Entocort in Canada for less than $200.00. I buy it at Canadadrugs.com. You must have a prescription, but you can fax it in. Don't buy the generic, it is not as good.

I am sorry you both are going through this, I know how bad it is.

Good luck,
karen

[NicolesMom]

Karen - Thank you so much for your kind words. I have read a lot on these boards and wondered if Asacol will work for her.

Unfortunately at this time, her Gastro does not seem "too concerned" about how she is doing. It may be an unfair statement because he has only seen her three times, but her last call into them for assistance was not very positive. Hopefully as he gets to know her these things will change.

She is in pain on a daily basis, but it seems like a lot of people with this disease live with pain too? Perhaps I am incorrect, but that is how it seems.

Thanks for the tip on the Canadian pharmacy. We live in a suburb of Detroit it is very close to Canada.

[tex]

Don't buy the generic, it is not as good.

I'm curious about where you got that information, because it conflicts with our own personal experience. We have several members on this board who use a generic form of budesonide, at a cost of only $40.50 per month, plus shipping, and no prescription is needed. Their unanimous opinion has been that the product works just as well as the name-brand product available in this country, which, as you pointed out, can be bought at a big discount in Canada.

Prescriptions written by U. S. doctors are not valid in any other country, nor are prescriptions written by foreign doctors valid in this country. The Canadian pharmacies require a prescription, but that is simply a "feel good" requirement, since foreign prescriptions are invalid, anyway. Pharmacies in other countries that do business with foreign customers don't usually bother to require prescriptions from foreign customers, for that reason.

Tex

[wonderwoman]

Thank Tex for pointing out that generic Entocort from Canada or the other supplier is just as good as the brand name. Many people here are using it including myself. I am down to 5 Entocort a week and doing great.

I have noticed we have a lot of new people here seeking help. Welcome to all of you and best of luck to you.

[klhale]

Well, what I said is that the generic Entocort did not work as good for me. So maybe it does work just as good, but I was so sick it seemed to me that the Brand name worked better. I am glad the generic is working for others. Also, these Canadian pharmacies require a prescription, it may be for "feel good reasons", but they still require it.

[JoAnn]

I'm one for whom the generic Budesonide worked just as well as the brand name and at a tremendous savings in cost. If I ever have to go back on it, I will use the generic. JoAnn

[Gabes-Apg]

My pain reduced considerably with a couple of months after i removed the trigger ingredients from my diet (gluten, yeast, dairy, soy)

now a days the only times i get pain is a) when my immunity is fighting a cold or a virus b) when i push myself too much physically and dont get enough rest.

Pain was the main symptom that i had with IBS and MC for most of my life.

it is wonderful she is gradually accepting the facets of MC. Life is different and it aint all necessarily bad!

take care
and big hugs to you for being so supportive

[NicolesMom]

Thanks Gabes !

I also appreciate the feedback and support from everyone!

Sharon