I'm sick and running out of treatment options. any advice?

I've been seeing a great GI doctor since 2007 but he has told me we have tried all of the current medications he uses to treat crohn's patients and its time for me to try the research hospital. I have tried remicade, humira, cimzia, immuran, and had not had much response and could not tolerate side effects. I had surgery last year and got about six months relief before my symptoms came back. I've been getting by on prednisone for the last few months while I waited to see a doctor at St Louis university. The doctor didn't have many options for me as there are no clinical trials enrolling right now. I will have some testing done before my appt next month but I do not expect them to show anything new. We will discuss possibly trying methotrexate next. I've read about it but would love to hear some real people's experiences with it. Also any advice on other options I may have regarding doctors. I have medicare and had to fight to get an appt at STLUN hospital after being denied my first referral to Washington U. My biggest worry is who is going to help me when I'm down. The new doctor is difficult to get ahold of and almost impossible to get into see. I have been comfortable with my doctor up the steeet who always called me back but I feel like he has sent me on my way. Im worried about having no option but trying another scary new drug. Is there anyone to see for a second opinion at this point? Any advice would be appreciated.

Anti-tnf's are still the state of the art treatment for the time being. I've heard that the newest one, Vedolizumaub, is very close to becoming available. Perhaps you could discuss that with your GI.

My kid has been on methotrexate for 4 months after having to go off Remicade with multiple anaphylaxis shock responses, finally confirming she is allergic to Remicade. Because of her age at the time she was not eligible for Humira or any other biologic so methotrexate was her only option.

Metho has subsided some of her symptoms, and in the beginning gave her the ability to bring her bathroom trips down, and mostly remove the blood in her stool. Unfortunately it isn't doing much for her esophagus so now that she is 13 she is eligible for Humira so we will be adding that to her meds. I met with a doctor at Sick Kids that was able to share with me the great results on the combination of metho & Humira. He was part of the study and could share with me positive personal stories. Feeling like we are at the end of our rope it made going into this next step easier to do.

I know that if she wasn't on methotrexate she would have not been able to make it through her bat mitzvah ceremony without having to stop and go to the bathroom. Everyone made plans if she had to leave & go, but it was the best feeling to know that even through such an important event she got to not focus on when she had to go the bathroom.

Your diet has nothing to do with it. Doctors have stated that over and over. I was on Pentasa for 5 years and recently switched to Lialda and love both. Maybe you can give one of those a try. Good luck to you!

Thanks NiceCupOfTea. Getting my teen to try a 'diet' goes against the whole message I'm trying to put forward that we push on girls. We already have enough issues with girls and diet in society. The last thing I need is to tell her she needs to take a diet for her crohns. I am just trying to promote healthy choices. I respect it helps others to change up their food choices, but diets are near impossible to maintain forever and sets others up for failure. Good for those that it helps, but if meds aren't working it isn't the diets fault, its the meds fault.

Thanks, Im open to any suggestions at this point. I've never tried the SCD diet but have done the all liquid a few times. I've adjusted my diet over the years and pretty much stick to my "safe" food which if course is not the healthiest. My worst symptom is the cramping and pain that starts shortly after I eat or drink anything. Im weak willed and usually figure if its going to hurt anyway I should just eat food vs ensure because I will have more energy. I also rely on pain med ti get me through most days. Diet is definitely something I could improve on. (Just have to mention I have dreams about salad. Haven't had one in years. My kids think I'm crazy!)

No problem, SupportiveMom - even though I didn't do a lot... :-/

For whatever it's worth, I couldn't agree more with you. I've got some serious reservations about the SCD and other diets of its ilk, which I usually keep to myself. If adults want to follow it, that's their business. I feel more bothered when I see children and teenagers on it, though.

I think what disturbs me the most is the way that "healthy" eating is becoming more and more extreme. It's being turned into a cult of the body. Instead of abasing themselves before God, people now abase themselves before nutrition. In a culture where people panic endlessly about the obesity 'crisis', not many people are prepared to speak out about the pendulum swinging too far the other way. But being underweight is worse for your health than being overweight is.

The whole subject just bores and tires me beyond belief. I did go through an anorexic phase, of which "healthy eating" was a part of. The more weight I lost, the more panicky I became about what I was putting into my body. I tried to eat more vegetables and cut down drastically on sugar. My Crohn's got worse. I now eat whatever I feel like, regardless of its "healthy" properties. I watch calories because I'm a bit overweight (thanks Pred) and don't want to put on any more weight, but apart from that I couldn't care less what I eat.

PS: Even if a strict diet had helped me, I wouldn't have seen that as a victory because I wouldn't want to be on it for the rest of my life. That's why I don't get why the diet types always sound so jubilant: I can understand choosing to follow the SCD if it avoids an ileostomy. But to me there would no pleasure in it: it would be like taking cod liver oil, only grimmer. Wouldn't even be able to have a cup of tea; what's the point of life if you can't even have a cup of tea?

Post Edited (NiceCupOfTea) : 11/17/2013 9:59:26 AM (GMT-7)

Just wanted to correct or respond to a few comments

"NCOT - Normally if a diet is gonna work for somebody it starts showing an effect pretty quickly (within 2-4 weeks, but maybe even sooner. "

Not correct for SCD. For many it takes months to see real improvement, although you are correct to say some have faster results. However it is just plain incorrect to imply if you do not see improvement in 2 to 4 weeks you never will.
In my case I was taking a couple of very small illegals and did not introduce new foods slowly enough or start on the intro diet. It was after I went all the way back to intro diet, got rid of illegals, and then started adding foods very slowly that I saw progress.

"NCOT - I also think it's a bit insulting to cast aspersions on those for whom the SCD failed. It's like blaming somebody for medication not working."

What I said was "My observation and experience tells me that there is a 100% substantial symptom ( I am not saying 100% relief from all symptoms) improvement". This is the facts of my experience and observations. I am not sure how expressing my observations can be insulting. I reiterate, I have never seen anyone really work at this, for an extended period of time, without substantial improvement. I know folks who have taken years to see real improvement.

"SupportiveMom - Getting my teen to try a 'diet' goes against the whole message I'm trying to put forward that we push on girls. We already have enough issues with girls and diet in society."

If you eat you have a diet. You can shape what you eat to heal, or you can choose to ignore any impacts. Diet does not mean lose weight. Body images need to be managed, I agree. I raised 2 semi pro ballerinas and we were very conscious to teach the difference between eating for health and eating for weight. I believe it is our responsibility to teach health to children including brushing teeth, washing up, and what we eat (read diet). I do not understand folks who think it best to ignore any of the above.

"Supportive Mom - diets are near impossible to maintain forever , NCOT - That's why I don't get why the diet types always sound so jubilant"

I think these are tied together. I was sick everyday for years (me), and am now feeling good way more than bad. I have not knowingly strayed from the diet in 4 1/2 years. Since the day I started. I eat amazing flavors everyday. I serve my food to non SCD folks all the time and they love it (although they miss their rice/potatoes). Being on this diet is nothing compared to being sick for years in a row. Folks who were sick and are now so much better are jubilant. Before we were sick daily, now we feel not only good but great due to exercise and nutrition finally getting back into our bodies. Trust me, there is nothing in the food world that even temps me compared to feeling good.
That does not mean I do not miss having a beer every once in a while, but most certainly not enough to get sick again.

It is all about finding a healing path. Some trust traditional docs, big pharmacy and the government to know best. I have learned there is much I can do and learn to play a leading role in my health management. I still go to traditional docs and take traditional meds (pentassa), but I am doing everything in my power to inform and help myself and it is working for me, so of course I encourage others

Hope this provides clarity of my thoughts without making anyone even 1% upset. I want to encourage others, not upset anyone (really and truly)
Healing thoughts
Dave

different things work for different people and I hope you find some relief. I too, would look to diet. I'm out of options for the drugs too for a different reason. I rely on diet and exercise to control my disease.

The medical community is beginning to invest time and resources into diet. I would strongly suggest the SCD or some variation. I do Paleo. Read about the diets to understand the reasons we are eliminating so many foods. Maybe this will help:

http://www.youtube.com/watch?v=PczRPu1invs&feature=c4-overview&list=UUiP0h6uaJC9SCG6oEPWNmdw[url]

I am sorry to hear you are struggling so much right now, crohnsmommy33. :(

Have you considered going out-of-state to a hospital like the Mayo Clinic or UPMC to get an additional opinion?

In a nutshell:

Meds suck. Diets suck.

Heh, thanks dave. And for days when even four words is too much: life sucks :p

crohnsmommy, if you are ready to try an alternative approach, here is what I can offer you, through my doctor.

Inflaguard - 3-4 pills 3-4 times per day
Aloe Vera gel - 3oz 2-3 times per day - diluted in water or not
A fast/modified fast - either water or veggie juice fast for a few days. Or, something like chicken soup for a while. Or, even better, Ultra-InflammX (google it) for a few days to a week (3-5 servings per day) and nothing else if you can do it.


This got me out of a month long flare in less than 3 weeks! I used Lily of the Desert brand Aloe Vera and the InflaGuard can be purchased on Pureformulas.com.

Here is some more information on InflaGuard www.douglaslabs.com/pdf/pds/INF.pdf.

I hope you get better soon crohnsmommy.