I wish I could offer help, but only can say I'm sending good vibes to you & your daughter, and I hope you get this sorted.

Here's a little lite reading you might find interesting. I found the first one when wondering why it took 2.5 hours for the barium water to make it through my small intestines when in only took 30 minutes the year before. There was definitely inflammation of some kind but my surgeon "wasn't concerned".

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2914216/


http://www.annalsgastro.gr/ind...rticle/view/1004/742

I'm sorry Becky is having these problems. I wish I knew something else I could say.

Thank you rachelraven. I hope your daughter is doing well and you get have a good mammo tomorrow.

Thank you Paulette and for the "light reading" also. I'm always reading something medical...

she saw GYN today and she did not feel any cysts, so it's not that.

She will call GI tomorrow...

I'm glad all went well with Becky's GYN.

I think there is overlapping of autoimmunne disease symptoms and our doctors are not always considering these possibilities. It took a friend of mine years and then changing to all new doctors - that worked together as a team - to finally get the correct diagnoses that had been entirely missed by her other doctors. She has several that are quite serious.

Oh no, I'm so sorry to read this. Is she back in NY?

Did they rule out adhesions?
Because, after 4 surgeries, and pain, I'd think to them first.

No Allykat, she is still in Chicago, yuk. She came home for an emergency visit with her surgeon and had a scope where he saw the ulcers, said they were common and non-descriptive, but the good news was no narrowing. He is thinking the bowel may be spasming since all the surgeries?? Gi in Chicago is a new one for her, only saw him once so far and he doesn't lay a plan out for her...

Ikh, they have thought adhesions in the past, but each time she had surgery she had very few adhesions, good news that she doesn't seem to make them.

No advice, just hugs...
Sharon

Thank you Sharon.

A higher dose of Pentasa may help. Typical IBD dosing is up to 4gm/day. Has she tried antispasmodics?

Jan

Thanks Jan! We were thinking she should go up on the pentasa, she takes 3 grams now. Then today, the new GI, she has only been to once and who only responds via his nurse outside of office visits, today his nurse left a message to my daughter to stop the pentasa! She had a final paper due so she took her pentasa and will call (and play telephone again) the nurse tomorrow and ask what is he thinking? This dr never lays out a plan, he reacts, so we don't know if he has a plan but stopping the pentasa she does not understand that.

She did try antispasmodics but was not able to take them and function very well, it made her extremely tired, and visual disturbances and that was the short acting one. Plus she didn't think it help.

On facebook there is a group that is using LDN (low dose naxeltrone Sp?) to deal with their IBD. I think if it works, it takes a while to kick in - in terms of fighting inflammation. It would take research re risks, side effects etc... - a functional dr would more likely prescribe than a GI.
Also my son takes peppermint oil capsules which 2x a day (Heathers IBS - google) and that is supposed to help with stomach pain. I think it is one of the things helping give him relief. His diet is strict and he also has had less stomach pain since being on rifaximin.

Thanks boysmom. Has your son tried LDN? I was looking into that and you are right, the GI will not use it. I looked into a Dr who would use it but they do not seem reliable so far.
The peppermint oil burns badly coming out for my daughter.

Ischemia is a lack of blood flow and should be looked at shouldn't it?

Now that her final paper is finished and all of her course work is done I recommend that she take a longer acting antispasmodic like Dicyclomine (Bentyl) and/or add stool slower like Loperamide (Imodium) and Norco (hydrocodone/tylenol). I too get some blurry vision with the antispasmodic but there are trade offs we have to make sometimes. I'd rather have some blurry vision than take prednisone for instance. Especially when they don't know what is wrong! The blurry vision goes away quickly. Becky can get some respite until her doctors to take more than 10 minutes to look at her case, analyze it and consult with each other - what a novel idea? I have IPS which is like IBS and I have found that 2 Loperamides, prescription Imodium, or Norco slows down my system and helps me more than an antispasmodic many times.

I'm just suggesting something to help her temporarily.


My internist and I analyzed LDN and decided against it, a treatment discussed above. It is an individual decision but we weren't convinced the science was there to prove it works. I know some people on the site have been helped but others have tried it and haven't been. This would have nothing to do with ulcer or ischemia treatment or a lot of the things that Becky's mom is talking about. It takes about 6 months to see any results as well, right?

My son did not try LDN but was about too. Ultimately the GI said at that point he was too sick - she was worried it would mask a problem. I don't know enough about it, but it seems it has helped some ( and not others). That same site has peppermint teas in case that would be calming but not hurt on the way out. I hope she gets some relief soon. Long journey....

Thanks Te Marie. She is coming home for a month so if she has no other answer from the dr then she could try the antispasmodic and at least I will be around if she gets wiped out by it. She processes meds differently since the neurotoxicity.

Thank you both for the LDN information. She had asked the current GI about it but he just said no. I was a little hesitant with this from what I said above with the processing of meds and this works by crossing the blood brain barrier.