Running out of treatment options

[agrady1]

I was diagnosed with crohn's 12 years ago, although I had been sick for at least 4 years before I was diagnosed. I have been on prednisone, asacol, Pentasa, 6mp, imuran, Remicade, humira and cimzia. I have had a problem with every single drug that I have been on. I was on Remicade for 8 years and it was a miracle drug. It got me through 2 pregnancies and after my son was born I was actually in remission for a year or more. However, I started having weird unexplained symptoms around the same time. Episodes where I would get very dizzy, have a migraine, really bad diarrhea, cramping, and then I would get really shaky. The doctors were concerned that I was having systemic allergic reactions to something but they weren't sure what. Within a half hour of my last infusion ( which was almost a year ago now) I had a severe migraine, dizziness, spasming cramps in my calves, muscle weakness, and muscle tremors. I was taken off the Remicade and we tried to see if I could stay in remission with no drugs. That was in December. By march I was flaring and having severe secondary inflammation. My knee was the size of a basketball and both of my ankles were pretty swollen. After ruling out lupus and other potential problems I was put back on prednisone for the first time in 8 years and we started humira. I made it through 3 injections before I had neurological problems and had to come off of it. During this whole process we were also moving across the country just to add to the stress and chaos. My new doctor and I decided to see if I could tolerate cimzia. I was having minor problems after each injection but my doctor really wanted me to stick it out. We decided to split my third dose into two injections to see if I could tolerate it better. Unfortunately I had a pretty severe reaction. The day after I was running a fever, had very severe pain in my legs, feet, arms, and hands, and was incredibly shaky and dizzy. I also felt like my limbs weighed 100 pounds and trying to move my arms or legs took considerable effort. Now I have been taken off of the cimzia.

I am not a canidate for tysabri. At this point the options seem to be stelara or joining a study. the whole thing is so overwhelming. I meet with my doctor to talk about my options tomorrow. I just don't know what to do. I feel like I just can't handle going on another medication. On top of the fact that I am still flaring I am dealing with neurological side effects that are even more disruptive than the flare. I find it's so hard to try and find good information about other ways to treat crohn's. I feel like my body needs a chance to completely detox before I can start something new. I have two young kids who deserve to have their mom back instead of this depressed sick mess. I'm not usually so down and frustrated but I just feel like I'm out of options.

Has anybody out there had any good success with diet and alternative treatments or recommendations for websites that have good information? Any advice would be greatly appreciated

 

[Jennifer]

Hi and welcome to the forum!

Have you tried Enteral nutrition or Low Dose Naltrexone? Has surgery ever been brought up to help kick start remission (that's what I had to do when all medications at the time weren't enough to get my disease under control)? Have you had blood work done to check for any vitamin deficiencies (even being in the low side of the normal range can bring on symptoms of a deficiency such as fatigue, headache, depression etc) for iron, B12, folic acid, magnesium, potassium, zinc, vit. A, B, C, D, E, K etc?

 

[shalin]

Hello agrady1. I don't know what you have or haven't done with foods. While I had severe problems when I had found out i had crohns, my doctor put me in the hospital for five weeks on a central vein for the nutrients I needed. I was at the time upset and thought it was pointless. I was put on a soft diet and low sodium. After a week of that I was allowed to add things that were easy to digest. If it was able to resolve by chewing it than it was safe to digest. I was also on imuran at this time. I didn't drink alcohol. It took about a year or so to get down the foods that didn't hurt to eat or digest. I stayed with that even through today. I have just recently started flaring after years of remission due to my family doctor putting me on to many antibiotics. This killed of my good bacteria. I also did a lot of my meals in the crockpot. This kept everything very soft and digestable. I hope some of this helps.

 

[agrady1]

My crohn's has so far always been nonsurgical. I have not done enteral nutrition. It's been awhile since I have had vitamin deficiencies checked. My old doctor fairly routinely checked for anemia and I was usually pretty good. I have been b12 and d deficient in the past and when I was first diagnosed back in 2000 I ws put on zinc and folic acid. I had not actually heard of Low dose naltrexone before but I will bring it up with my doctor.
Shalin- I am so sorry to hear that you are just starting to flare again. I have tried various diet things but always on my own. I think that diet may end up being key for me if I can manage to find the right approach and have someone guiding me with it. Diet and crohn's is so individual that I get lost trying to do it on my own. It's amazing how you can live with a disease for 12 years and wake up one day feeling completely lost as to how to take care of it. Up until this past year I felt pretty confident on my handle of all things crohn's. While I have tried to be conscious of my diet and avoid foods that I know trigger flares for me and in theory know a lot about crohn's and diet, I have not really had to think about it as a possible main approach to managing my crohn's. I am curious to see what my doctor says tomorrow. I'm nervous though because this is only my second appointment with him. I had been seeing my old doctor for 9 years or so before we moved and I know I would have felt comfortable to tell him honestly how I was feeling about trying a new drug or entering w study. I'm a little nervous that I might feel timid to tell the new doctor that I mentally don't feel I can handle being put on any more medications at this point or that I feel like my body needs a break. Kind of ironic given that I believe strongly that you are your own best advocate when it comes to your health.

 

[David]

Greetings and welcome

I'm sorry you're at the end of the line for most of the traditional medications

As Crabby mentioned, LDN is a great option. However, you're going to need to research it yourself before you talk to your doctor about it. Start reading here and ask any questions you have.

The other possibility that came to mind as I read your story was stem cell therapy.

We're here for you!

 

[Daisylover]

I was diagnosed with crohn's 12 years ago, although I had been sick for at least 4 years before I was diagnosed. I have been on prednisone, asacol, Pentasa, 6mp, imuran, Remicade, humira and cimzia. I have had a problem with every single drug that I have been on. I was on Remicade for 8 years and it was a miracle drug. It got me through 2 pregnancies and after my son was born I was actually in remission for a year or more. However, I started having weird unexplained symptoms around the same time. Episodes where I would get very dizzy, have a migraine, really bad diarrhea, cramping, and then I would get really shaky. The doctors were concerned that I was having systemic allergic reactions to something but they weren't sure what. Within a half hour of my last infusion ( which was almost a year ago now) I had a severe migraine, dizziness, spasming cramps in my calves, muscle weakness, and muscle tremors. I was taken off the Remicade and we tried to see if I could stay in remission with no drugs. That was in December. By march I was flaring and having severe secondary inflammation. My knee was the size of a basketball and both of my ankles were pretty swollen. After ruling out lupus and other potential problems I was put back on prednisone for the first time in 8 years and we started humira. I made it through 3 injections before I had neurological problems and had to come off of it. During this whole process we were also moving across the country just to add to the stress and chaos. My new doctor and I decided to see if I could tolerate cimzia. I was having minor problems after each injection but my doctor really wanted me to stick it out. We decided to split my third dose into two injections to see if I could tolerate it better. Unfortunately I had a pretty severe reaction. The day after I was running a fever, had very severe pain in my legs, feet, arms, and hands, and was incredibly shaky and dizzy. I also felt like my limbs weighed 100 pounds and trying to move my arms or legs took considerable effort. Now I have been taken off of the cimzia.

I am not a canidate for tysabri. At this point the options seem to be stelara or joining a study. the whole thing is so overwhelming. I meet with my doctor to talk about my options tomorrow. I just don't know what to do. I feel like I just can't handle going on another medication. On top of the fact that I am still flaring I am dealing with neurological side effects that are even more disruptive than the flare. I find it's so hard to try and find good information about other ways to treat crohn's. I feel like my body needs a chance to completely detox before I can start something new. I have two young kids who deserve to have their mom back instead of this depressed sick mess. I'm not usually so down and frustrated but I just feel like I'm out of options.

Has anybody out there had any good success with diet and alternative treatments or recommendations for websites that have good information? Any advice would be greatly appreciated

My daughter (25 year old) also got 8 years from Remicade! She has benefited from 6MP
and the Crohn’s Disease exclusion diet that we found online. ( Admittedly- She is now on prednisone taper as well.) After at least 3 years of flaring, she started healing initially with the 6MP (you can’t do) and this very restrictive diet. Weirdly, in the past, the IBD AID diet did nothing for her. She also tried Absorb Plus Shakes liquid diet before that with no benefit. This exclusion diet was part of a trial that we found... it was not recommended by her GI... the diet started her healing! (Then 6MP helped) she has had her first normal bowel movements in practically a decade since adding Cimzia 2 weeks ago (again not for you - sorry) The exclusion diet and then 6MP were key. She has literally tried every FDA approved biologic. We are hoping that Cimzia pushes her to remission so that she can have surgery on a fistula. I put the diet link below.


We can not imagine you dealing with this and caring for two young children. Wishing you better days!

https://ntforibd.org/therapeutic-diets/crohns-disease-exclusion-diet/
Here’s the AID diet suggested by GI:
https://www.umassmed.edu/nutrition/ibd/ibdaid/

 

[D Bergy]

I was diagnosed with crohn's 12 years ago, although I had been sick for at least 4 years before I was diagnosed. I have been on prednisone, asacol, Pentasa, 6mp, imuran, Remicade, humira and cimzia. I have had a problem with every single drug that I have been on. I was on Remicade for 8 years and it was a miracle drug. It got me through 2 pregnancies and after my son was born I was actually in remission for a year or more. However, I started having weird unexplained symptoms around the same time. Episodes where I would get very dizzy, have a migraine, really bad diarrhea, cramping, and then I would get really shaky. The doctors were concerned that I was having systemic allergic reactions to something but they weren't sure what. Within a half hour of my last infusion ( which was almost a year ago now) I had a severe migraine, dizziness, spasming cramps in my calves, muscle weakness, and muscle tremors. I was taken off the Remicade and we tried to see if I could stay in remission with no drugs. That was in December. By march I was flaring and having severe secondary inflammation. My knee was the size of a basketball and both of my ankles were pretty swollen. After ruling out lupus and other potential problems I was put back on prednisone for the first time in 8 years and we started humira. I made it through 3 injections before I had neurological problems and had to come off of it. During this whole process we were also moving across the country just to add to the stress and chaos. My new doctor and I decided to see if I could tolerate cimzia. I was having minor problems after each injection but my doctor really wanted me to stick it out. We decided to split my third dose into two injections to see if I could tolerate it better. Unfortunately I had a pretty severe reaction. The day after I was running a fever, had very severe pain in my legs, feet, arms, and hands, and was incredibly shaky and dizzy. I also felt like my limbs weighed 100 pounds and trying to move my arms or legs took considerable effort. Now I have been taken off of the cimzia.

I am not a canidate for tysabri. At this point the options seem to be stelara or joining a study. the whole thing is so overwhelming. I meet with my doctor to talk about my options tomorrow. I just don't know what to do. I feel like I just can't handle going on another medication. On top of the fact that I am still flaring I am dealing with neurological side effects that are even more disruptive than the flare. I find it's so hard to try and find good information about other ways to treat crohn's. I feel like my body needs a chance to completely detox before I can start something new. I have two young kids who deserve to have their mom back instead of this depressed sick mess. I'm not usually so down and frustrated but I just feel like I'm out of options.

Has anybody out there had any good success with diet and alternative treatments or recommendations for websites that have good information? Any advice would be greatly appreciated

I use only alternative treatment targeting the pathogens that caused my symptoms. Its a bit of a learning curve but it has kept me well going on ten years now.

I eat whatever I want but try stay away from processed food. Not always successful at that. Had popcorn and a Buster bar tonight but hey its Friday night.

Not because I can’t eat it. I just don’t think our bodies are going to do well in general on food with little nutrition.

I still have an immune system problem as demonstrated by the granuloma annular on my hands. I am just artificially reducing and/or eliminating pathogens that cause symptoms which allows the intestinal tract to heal. Rolling back the disease process.

I also take several supplements that help mostly indirectly with Crohn’s but have many health benefits in general.


Good luck.

Dan