Flex sig results

I had a flex sig yesterday and the results were not good. Everything was looking perfect until he got to the splenic flexure and then he started seeing mild inflammation. I had moderate inflammation throughout the transverse colon. The ascending colon, cecum, and terminal ileum appeared normal. I go back Thursday to discuss the biopsies. He mention starting me on Humira, Cimzia, or an immunosuppressant. I am not ready to go on any of these three.

I am so upset right now. I am a very pessimistic person by nature and yet I was still only expecting some left sided inflammation at worst, not him to say moderate inflammation in the transverse and the mesalamines most likely can't treat it.

I am going to broach the subject of alternative treatments, namely LDN, FT, and helminths. Any tips or suggestions as to how to go about doing this?

Also, what about trying Entocort as well, could this not be a possibilty?

I will definitely take a look at these LDN studies from Dr. Smith. I think this would be the treatment I would want to start with of the three alternative approaches I mentioned. I cannot go straight to what he is proposing without trying somethign else first.

I would say I have a good relationship but if I had to guess would say he is not gung ho about alternative approaches. He did say I was one hell of a patient when he was poking in the ileum with the sigmoid scope.

Thanks hateuc. A different mesalamine was my thought as well. I asked him about it durign the procedure and he hemmed and hawed a little. Later in the recovery area he said he is leaning more towards Crohn's and doesn't think that the mesalamines can be effective. I will ask him about Pentasa or something for a little higher up, and especially the Entocort also.

After starting bleeding in mid-May I started the enemas nightly, so I'm not really sure why it's all that suprising that things look good up to where they reach...

He didn't schedule a small bowel follow through. All he said was it looked fine during the flex sig, which I don't know how he could tell because the walls were covered with...umm...pre poop I suppose.

I guess you could say last c-scope was yesterday. He said the ileum looked good, I can ask him again at the follow up appt Thursday. He even had the nurse change all the paperwork from flex sig to colonoscopy since he got all the way into the terminal ileum.

We'll see what he says Thursday. I'll press hard for Pentasa, Entocort, and the three alternative options as well. I hope he's open minded.

Oh, haha...I should reread before posting.


My guess is not enough of the med to the transverse....or apriso is just the wrong one for you at this point.

Tell me again what others you were on before the apriso?

q

Levi,

Yes, let us know how it goes as to your doctor's appt. and how open he is to alternative treatments.

Here is the link for the Dr. Jill Smith Study with Crohns patients:

Here's the Penn State research done by Dr. Jill Smith with LDN and Crohns Patients.
http://www.ncbi.nlm.nih.gov/pubmed/21380937

Hope this helps.

Levi - I am SO sorry to read of this!!

I bet the reason the descending looked good was because of the enemas. I've had that happen also.

Your thinking is exactly what I'm thinking for myself....... I was doing great for a month and now I'm having some discomfort, so.... I'm thinking my colon may look like exactly what you describe. (scoping in a month or two.)

And... I would be thinking exactly the same things: a different 5-ASA, FT, LDN......

Although, reading some posts, like MyUC and thatfield's, who have done SO well on Imuran.... I'm more open to that now than I once was.

And... yes, I have always bargained with my doctor as described above.

I'll be looking for your next report from the doc!!

We ended up going with Pentasa and a small amount of Enocort for a few weeks. He will do another colonoscopy in December to see if it has made any difference. If not, I'll have to go on a stronger class of med.

He didn't put any stock in any of the alternative treatments. I mentioned the docter who had helped sas out so much and asked him if he would be interested in doing a procedure like that. He was not amused. He said you could also find someone who was healed by doing a rain dance. He was that back a little though and mentioned that FT had been around for 50 years. He said I was young and "how often would you want to do that, you don't want to be doing that once a month for the rest of your life." I was thinking, it beats having a colonoscopy every three months! Anyway...

I told him that I wouldn't want to go on any higher grade of medication if my back up plan to that was surgery. I want to feel like I have other options besides that. I mentioned Prochymal to him and told him I had been reading a lot about that and seen that it had such fantastic results in it's trials. I asked, if in his opinion, there would be that option or another similar stem cell treatment option for Crohns in the next decade. He said he felt like there would be. This is what made me feel the best of all from the discussion.

I don't know why my sigline shows up so sporadically. I can't tell what makes it show up.

Anyway, I've been on VSL #3 DS the for almost two years now. I'm going to start taking four packets per day and see if that can help. I just switched insurances and it only costs 37$/mo now as opposed to 50$, so not bad at all.

I know it says it's for UC and pouches, but I think it has benefitted me. Also, in addition to it in all likelihood being Crohn's colitis, he said the nature of the inflammation itself is more like UC inflammation (which my blood test showed) so I'm definitely staying with the VSL.

What should I do about alternative meds though? Even with the stem cell possibilty I don't want to jump right to 6mp or Humira without giving soemthing else a chance, and he obviously does not want to try anything that is "unproven."

I will update my sig. I am currently taking four packs, 3.6 trillion/day. I'm not taking nearly that much glutamine, I will up that, and I've been on vacation some and off of it.

An alternative docter was my thinking also. Looks like it may come to that. Thanks for the list, I have a feeling I'll be using it unless this Pentasa works wonders.

No SCD, I just casually limit my bread and dairy, and use SCD recipes from time to time. If I order a sandwhich I'll take off the top bun, that kind of thing, maybe worthless, or maybe every little bit helps, I dunno.

Levi,

that kind of thing, maybe worthless, or maybe every little bit helps, I dunno.

Regarding the SCD, I would suggest you give it a try and see if it helps improve things - I think it will.

I know it's tough, so you could always start out by just cutting out Dairy and Wheat of all kind and see what happens from that point, no?