no treatments left?? feeling scared..hoping for a miracle

Hi everyone...
I am in need of some of your wisdom :) I am not trying to be a debby downer but ill give you a little bit of my history. Im a 29 year old gal and mother of an amazing 5 yr old girl. I was diagnosed with crohns 3 years ago (mainly in terminal Ilium). I started budesonide which didnt work, thrn did prednisone which I had an anaphylactic response to, so I had to stop. At this point I was hospitalized bc the crohns was so severe and I was able to start humira along with imuran. This was successful in putting me in remission.., although my whole body started to go numb and it didmt cease. I saw a neurologist and they concluded it was PML which could /would kill me if I didnt stop the immunosuppression. Luckily thr PML retreated and now stays dormant in my brain. I didnt take any sort of crohns med for about 7 months and was flaring bad again. I was hospitalized and they did an emergency hemicolectomy (no bag). The surgeon left minor inflammation in the remaining part of my colon. After surgery I was on no medication as the previous didnt work and I could no longer take a tnf blocker style of biologic bc of the pml. I went to a naturopath and started taking ultrainfamex, all greens, cod liver oil, vit d, vit c, milk thistle, turmeric, vsl100 and ate gluten and dairy free. As a sidenote, I dont drink (havent in 9 yrs) but do smoke abput 5 cigarettes a day. This natural meds did help my joint pain greatly (my crp has measured up to 220 in the past and ive been unable to walk or needed a cane when flaring at times in past). Although I am flaring again. I just had a colonoscopy yesterday and my gi said its not good. I saw the diseased tissue and it was bleeding while the camera was in, my 'new' terminal iliem is in worse shape than right before my last surgery and it is so inflammed I am very close to an obstruction he says. My gi says there is a new study I can join for the new QU biologic which is a SSI inhibitor? I have also been reading about thr new fecal transplants but thry are only being offered to colitis patients in Ontario at the moment (I am in BC). The Qu study is my last and only choice as my GI says (and I believe him)...my question is...do u guys/gals know of anything else that could help severe crohns? I am even willing to try marijauna if it would help (from what ive read its more for pain relief rather than treating the disease itself). I will try anything...absolutely anything...I am so sick and tired of being sick and tired...thx and sorry about the long read :(

Hi Carrie,

I'm so sorry to hear of all your issues. Thankfully the were able to find about about the PML before it got out of hand. I know you mentioned that you couldn't take any TNF blockers, but can you take any immunosuppressants at all? If so, Methotrexate may be an option, but it is an immunosuppressant.

On the other end, have you heard of Low Dose Naltrexone (LDN)? That may be an option for you, and it's not an immunosuppressant. Some people seem to have very good luck with it, but like all other meds, it works for some and not for others. I've also heard it's not enough to get you out of a flare though, so I don't know if that's enough for you.

There is also TPN, or total parenteral nutrition, in which you are fed through a tube in your vein so you can let your bowels rest or else an elemental diet which is also supposed to help as much as steroids in some cases.

Have you tried any dietary measures, SCD or autoimmune paleo? I did SCD for almost 2 years, and it didn't work for me, but I'm now trying autoimmune paleo to see if that will help. I haven't read a lot of Crohn's patients specifically on autoimmune paleo, but I've read quite a few blogs for people with other autoimmune conditions in which it has helped. It is pretty restrictive, but then again so is Crohn's, and if it helps it's definitely worth it.

I am not a smoker, so I don't know how difficult it is to quit, but I've read many times how people with Crohn's who smoke are much more likely to relapse. Is there any possibility of your trying to quit?

There are also antibiotic therapies which are supposed to help, like the triple antibiotic therapy, you can google it, which may be an option for you, but I believe it can suppress your white blood cell count, and I don't know how that ties into the PML.

And there's helminth therapy, but I believe it's still not FDA approved, so it would be something you would have to do on your own.

Hopefully that gives you some ideas and hopefully one of those options can help you to getting better.

You might want to go on a low-residue/liquid diet in the meantime to avoid an obstruction. If gluten and dairy-free made no difference, SCD and Paleo probably won't either. It's my belief that these diets just aren't up to controlling severe Crohn's like yours (and mine before surgery).

I don't know if this is an option where you live, but in Europe and Japan there is a treatment called adacolumn apharesis. Google it for more info. It basically involves removing the blood from the body, filtering out the white blood cells, and returning the blood back to the body.

If you are interested in trying helminth therapy, here is the relevant site: autoimmunetherapies.com/. It doesn't come cheap.

And finally, this guy was the first person in Canada to have a stem cell transplant for Crohn's: maybe you can be the second person! transplantforcrohns.com/Home.html

Carrie5975 said...
Hi everyone...
As a sidenote, I dont drink (havent in 9 yrs) but do smoke abput 5 cigarettes a day. (

Smoking can really exacerbate Crohn's. Its like trying to put out a fire while lighting a newspaper and throwing it into the fire. You only about 5 cigarettes per day which is low compared to others who smoke 1 to 2 ppd. I would encourage you take to your doctor about starting a smoking cessation plan. Perhaps start you on medication (like 7 mg nicotine patch and medication like bupropion). Talking to your doc and getting support from your family increases your chances of quitting dramatically. But thats only if you want to. Because you have Crohn's I highly encourage it.

Also, thk u matthew sawrie..I read ur post the otherday and ive already started researching it! Way to go for making it back into remissionz!!!

Hi twins! Yes I feel your pain, literally lol. Yes my joint pain would be excruciating before when I was flaring. It was my hips for the most part..they would throb and I felt like I was 100 yrs old. MY CRP would float around 140-220 and my joints were just as bad as my intestines. My lower back and knees would get bad too. My chiro said its def all related esp bc of the areas effected. I remeber when I could barely walk and my husband would have to lift me out of bed and carry me. I would tremble with pain and morphine did not even touch the pain. Humira did help me out of my flare, but pml came along with it..I hope it helps u with no negative side effects!! It does sting when u do the injection and I felt like my body would radiate somewhat right after. Try taking it out of the fridge for 5 min before so its not so cold and I pinched the skin hard so when I did the shot the area was somewhat numb. I would also get (still do) something called errothyma nodoseum ...they r very painful small bumps under skin that go red and hurt to even touch. They attach to tendons (top of hand or even my shin) when your inflammation is bad (high crp) they r about the size of a dime. Kepp an eye out for those...they camt do anything about them, go away on their own but they r excruciating...I would say the biggest thing that helped my joint pain was eating gluten free. I know its daunting but it made a night and day difference. During this flare now, I only have mild hip pain but my crp is over 100. I wish u luck my dear...be strong and be your own heallth advocate. If something feels wrong speakup and fight for yourself :) and good luck with those hips!!!