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CrohnsHobo

CrohnsHobo

Joined
Nov 4, 2009
Messages
871
On Tuesday I had my appointment with my regular Gastro and yesterday I went to UCLA's Digestive Disease/IBD clinic and saw their Crohn's/UC expert.

Since Xmas I have only been on Prednisone after years of Remicade which failed to work. So I have been taking 40mg a day of the Pred since the week of Xmas until a further course of treatment could be determined.

Seeing the specialist at UCLA was very informative and interesting and we talked for well over an hour as he went through all my records I brought and got my entire history.

My next course of action is to start Humira and Methotrexate at the same time and to taper back off the Steroids. The Dr. at UCLA wants to monitor me on those two drugs to see how I do for at least three months.

In the meantime he also gave me a Serum test to determine if I have Crohn's, UC or a mixture of the two. Whichever I have will determine my surgical options. He also tested me for Celiac's.

If I do not respond to Humira and Methotrexate then I have two options. I can either have my colon removed with an internal pouch or I can go to Northwestern University and have a hematopoietic stem cell bone marrow transplant. They have given the procedure to 20 Crohn's patients, 16 of which are now off all drugs and in complete remission.

The Dr. also instructed me to take a large dose of Vitamin D3 which he said has shown in recent studies to have anti-inflammatory properties. 1 2000 IU pill a day.

I asked him about diet, and SCD diet and he said "they are all crap" He didn't see any benefit in sticking to a strict diet outside of a low-residue diet at the onset of a flare. But for me at this time moving to a SCD type diet will not do anything for me. Any other supplements were up to me at my discretion but he was not very big on any outside of the Vitamin D.

So the Humira and Methotrexate are supposed to be approved by Friday and Friday I go for some routine blood work/Hep Vacinations and Pneumonia shot. Then hopefully next week I will be on the new drugs.
 
Aye I am a little apprehensive about taking both Humira and Methotrexate at the same time.

At this point though I am willing to try just about anything they recommend. But after 15 years I have started to run down my drug options.

Will update again once I am on the drugs for a bit to let everyone know how I am getting on.
 
Good luck Hobo...You really are fortunate to have access to a specialists. Thanks for the sharing his opinion about the SCD.
 
imisspopcorn said:
Good luck Hobo...You really are fortunate to have access to a specialists. Thanks for the sharing his opinion about the SCD.
Click to expand...

Aye. Lucky to live in a major metro area and within a 2 hr drive of UCLA. I was a little taken back by his thoughts on food and diet. He was very upfront about everything though, I am sure he has been asked about it many times in his 30+ years of treating Crohn's/UC.
 
I hope it works out for you....I'll be curious, I can't see your profile. Do you have crohns or colitis? I had my colon removed 3 years ago, had a J Pouch created & Nov 2009--I got diagnosed with crohns, blood tests show not....Any how, love my pouch...bar none---I'd go back to a bag for quality of life if I had to. My crohns is in my pouch. I am only on Pentasa right now, but I have shooting pains in my rectum and in my pouch...I just got off of the prenisone. None of the drugs, Imuran or remicaide worked for me with colitis. So, keep posting so we know whats going on. But seriously, pouch takes time to adjust to, but works good--as long as you don't get crohns in the pouch:) Sue
 
Good luck Hobo, I didnt do well on the methotrexate either, I am not a headache type person and had them constantly, it did work for a bit but went off it. Just last night my Gi suggested I try, but me and the hubby both said it wasnt for me.

Are you having both Humira and Meth shots at the same day? And, do you do both shots to yourself eventually?

Hope you get relief soon, you are such a nice Hobo lol.
 
Hope this works for you Hobo, are they putting you on the injectable or the oral MTX? I was on the injectable one and it made me feel like crap, now the second time Im on it, Im on the oral, but I take an Ondansetron before the MTX and Im all good.

I may have to pick up some Viit D3.
 
Not sure yet. Spoke to the Dr. today and they have called in everything to my insurance and the specialty pharmacy.

They told me to call back on Tuesday to see how things are progressing. I am hoping it is the oral, don't really want to do shots for Humira and Metho.
 
I don't think she would be comfortable with that. Needles and such don't bother me, I just don't want to have to inject myself more than necessary.
 
CrohnsHobo said:
I asked him about diet, and SCD diet and he said "they are all crap" He didn't see any benefit in sticking to a strict diet outside of a low-residue diet at the onset of a flare. But for me at this time moving to a SCD type diet will not do anything for me. Any other supplements were up to me at my discretion but he was not very big on any outside of the Vitamin D.
Click to expand...


This is what our GI and GI nurse told us too. I'm so glad that we did not listen to him. If we did right now my son would be on Imuran and prednisone, and very likely dealing with how those drugs make you feel.

His disease was diagnosed very quickly and we went gluten free almost immediately, 5 months later we went SCD and LDN, since then he has been doing fine. He has peri-anal fistulas and he just told me last night that one is definitely healing over, it has not been draining since October and it now has all new skin growing inside - definitely healing from the inside out. I do not believe he would have healed without these major diet changes. We are still dealing with one more fistula, it arrived 3 months later, so hopefully gone in another 3 months time.
He has also gained over 20 pounds in 5 months, and has only one BM per day. He's doing great in school, and has a social life that I can barely keep up with. Something is going right.

I do believe that if there is scarring and damage inside that SCD will not heal it, but for some people SCD will stop the inflammation and progression of the disease. The proof is there from all the people that have been on SCD. Also, just for the record, gluten free and SCD are not the same, we went gluten free for 5 months, but saw the most changes after switching to SCD.

I'm sorry Crohn'sHobo that you are going through so much and that gluten free seemed to make things worse for you, but I know so many people read these forums (as guests and don't post - just looking for information) that I wanted to share the flip side. Good luck with what you will be trying next, I hope you are heading towards a long remission. :)
 
It does seem to work for some, and not for others. I don't know if that is due to diet, luck, medications, etc. There is no scientific proof that it works. I am glad it worked out well for your son, just don't think it is for me.
 
Oh my goodness not much left to eat plus I can't eat raw vegs. or fruit , or nuts etc. I'd be on my knees . Looking it over I admire anyone who could stick to that !. thanks for info.
 
Well yesterday I game myself the 4 loading dose injections of Humira and 1 shot of Methotrexate.

Surprisingly it was not bad. The Humira pens actually hurt more than the simple syringe for the Metho. My girlfriends mother used to be a nurse and she came over and gave me some tips on how to do everything. Hardest part was the initial ***, but not bad.

I did two in my left thigh, one in my right thigh, one in my left stomach and one in my right stomach. Felt fine all night but did not sleep well. Stomach was growling and as usual I couldn't relax my mind (not out of the norm for me.). So only slept about four hours last night even after taking a Tylenol PM and two Percocets. I partially blame the steroids, but I did go from 40mg to 30mg yesterday.

Today I feel OK, just a little bloated. But good energy levels and no nausea or anything. I continue on with 1 Metho shot a week and the regular Humira schedule.
 
I really hope you go into remission. Good job doing the injections. I always felt like I deserved a lolipop afterwards.:)
 
Me too Miss! I actually have felt great the last month, but I know that has to do with being on 40mg a day of Prednisone. Hoping I can do these for a few months and then maybe get on some maintenance drugs.

Not being able to have a drink while on the Metho kind of stinks, especially with baseball season and spring around the corner. =p
 
I hear you...I didn't have a drink for about 2 years. Just recently tried a Cosmopoltian for the first time (don't laugh, I'm a girl)....I staggered out of the room, but it was good.
 
Hey Carrie, I have never had one of those and always wanted to try. What does it tastes like? Dont feel bad I dont drink much either... when I was young everyone used to throw the beer bottle caps at me (I dont like be tho) and say hey Penny here's your drink...dont get drunk! LOL
 
Pen, I felt like Sarah Jessica Parker drinking it in the fancy martini glass. LOL!

I love cranberry juice and that is what is in. There is also vodka, triple sec, and lime juice....It is sweet and tangy.....I'm not a big drinker, but wow, it was good to me?

Sorry for the slight detour Hobo.
 
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