Where do you go when you have nowhere to go?

[kkaras]

Hello,

My name is Kyliegh and I was diagnosed with Crohn's Colitis in June of 2006. I am currently suffering through month 8 of my latest Crohn's flare and, although this is certainly not my first rodeo, my anxiety has seemed to reach an entirely new level in response to this latest bout. I am a college student attending the University of Michigan (GO BLUE!!), however I have been forced to take these last eight months off because of my health decline.

I am at the point in my flare where it is like a surprise party every morning when I wake up to a new symptom. I don't know where to go at this point because I've basically exhausted all of my options for medications; I've been around the block in the last seven years. Initially we tried a holistic route of treatment, but were forced to go the medication route when my health worsened more yet. We have been against steroids (i.e. Prednisone) from day 1, although I have at dabbled in Entocort, 5 days of IV Solu Medrol (with no taper), and currently, Uceris. I have burned through all current Anti-TNFs: Humira, Cimzia, and Remicade. Remicade was the only medication that has truly put me into remission, but I developed antibodies to the drug after one year. 6-Mertcaptopurine did really nothing for me except for make my pancreatic enzymes rise. I did a stint with Pentasa and am currently on Asacol (Mesalamine). I am also on Methotrexate currently, but that seems to be doing nothing but making my symptoms worse. Clinical trials seem to be the only other option, but I don't qualify because my Hemoglobin levels are too low, even after a blood transfusion.

So my question is: where do you go when you have nowhere to go? I am beyond frustrated, and quite distraught to be honest. I am open to any alternative medicine and would welcome any advice.

I'm new so hopefully that wasn't too much information? For those of you who have read till this point, thank you for your attention to my story!

All the best!
Kyliegh

 

[nogutsnoglory]

I'm so sorry nothing seems to be working. There are other immunosuppressive drugs you can try like Azathioprine or Imuran.

Are you sure you aren't eligible for any clinical trial? A few are looking at anti-TNF's like Stelara and others.

 

[CrohnsChicago]

You sure have been through a lot of the medications. I'm sorry things aren't working out for you

Have you had any surgeries or has the idea of surgery been tossed around for you yet? What clinical trials have been recommended to you in the past that you did not qualify for?

 

[DJW]

Hi. Sorry your having a rough go of it. I'm still learning about all these new meeds. I had about 20 years of remission and no drugs. Sending you my support and hope for remission.

 

[lgpcarter]

Can I ask why no prednisone? It's awful, but it does work.

Tysabri is one you didn't mention, though it scares the pants off of me. There is also Simponi - has that been approved in the U.S. yet? I know it isn't in Canada. Stelara as someone else mentioned, and I know my hospital here is doing clinical trials for a similar drug with less infection risks - don't know what it is called, though.

There is also LDN. I don't know anything about it, but there are people here who have had success and if you search, you will find the threads about it.

I was diagnosed at age 20 during my second year at university. It was a real struggle to finish, but my health did eventually get better once I didn't have all that school stress to deal with.

 

[kkaras]

Thank you so much for your quick responses! I cannot tell you how much I appreciate your support and well wishes, it means a lot

To answer some of your questions, in regards to the clinical trials, I've been trying to get into a "MAD-CAM" trial at the University of Michigan. I've had no such luck but have also been speaking to my doctor at the Mayo Clinic about trials they offer. The whole clinical trial process is a bit confusing to me so I'm just waiting for my doctors at this point.

Regarding surgery, unfortunately because I have Crohn's Colitis, a re-sectioning is not an option for me. My doctor said that I could have the surgery, give my large intestine/colon a rest and possibly have a reversal in the future, but to be honest, I just can't take the risk that I would be left with a bag for the rest of my life. I know it is not a death sentence by any means, but at this point, I'm not physically or emotionally ready to take that step.

Tysabri also frightens me and I'm looking forward to the FDA approving the Vedolizumab for Crohn's so we won't have to worry about the brain infection. I will, however, look into Simponi and LDN. Have any of you had any personal experiences with either of these drugs?

Also, I hope I'm not overstepping my bounds here, but I am also have a terrible bout with the perianal symptoms. Do any of you have any suggestions for treatments?

Again, thank you so so much for your help! It's lovely having finally found a community of supporters that can empathize with my situation! All the best to you all

 

[DJW]

Perianal disease can be awful. May I ask what yours involves. Mine included fistulas, fissures, and abscesses. I took lots of sitz baths to keep everything clean. My doc gave me a cortisone ointment with an applicator. I've come across some great tips on this forum. Take care of yourself.

 

[lgpcarter]

I have perianal disease as well (skin tags, fistulas, strictures and general inflammation/unhappiness). Very manageable usually when not in a flare, but making me really miserable at the moment.

Remicade worked well to keep things quiet down there, but like you, I had a reaction to it, so no more of that for me. I am on Cipro and Flagyl to try and help while I wait for a surgical consult for the fistula (drains out inside of my butt cheek, don't know what the tract is). I am not terribly optimistic that anything can be done surgically or that I want to go down that road at all right now, as I am afraid things could get worse, but will see the surgeon to discuss and see what he thinks.

Regular sitz baths can help.

I don't have any personal experience with Simponi, but there are threads about it. My doc mentioned recently that he might be able to get his hands on some for me but that seemed like it might be a pain in the ass (ha ha) so I am sticking with Humira for now.

Laura

 

[Chavoc87]

Hi Kkaras! It seems as if we are both in a similar situation. I am 26 years old and have been dealing with crohns for the last 12 years. I am completely exhausted and over this disease. I too have not been responsive to a list of medications I have tried. I have done Humira (double dose-so every week), remicade (one that led to infection and then another dose years later than led me to serum sickness), as well as many others. And I have had already 2 surgeries. The doctors now want me to try cimzia against what the allergist say not to because of my serum sickness a TNF blocker or Tysabri. There is no chance in hell I will ever do Tysabri. Maybe ill do it if the doctor sits next to me and gets a dose themselves or gives it to their own child if its really not that scary!

Just dont feel alone! There is a lot of us Crohnies out there feeling defeated.

 

[Traumanurse]

Just a Thought K, but since you don't want to try the surgery, have you thought about resting the bowel through TPN?

I did that for a year. I got better, but not sure if it was that, or a combination of things.

Good luck, and wishing you the best!

 

[kkaras]

Although I'm so sorry to hear that you all are suffering from uncontrolled perianal symptoms, I really appreciate the tips; it's somewhat comforting knowing that I'm not the only one going through this. Believe it or not, between growing up in Holland, and attending school in Ann Arbor, I've only met maybe a total of 5 other people with Crohn's disease. I think that may be another reason why I feel so distraught at times; when you don't have a community around you to empathize with your concerns, you start to believe that you really are alone. So thank you for proving my unreasonable thoughts wrong!! NONE of us are alone!

DJW & Igpcarter: I too have skin tags, fissures, fistulas and in the past an abscess. I've tried the sitz baths in the past but will try them again and with more frequency. If either of you decide to go the surgery route, I hope that provides you with relief!

Chavoc87: That's hysterical because I literally said the same thing to my doctor about the Tysabri! The doctors can be so nonchalant when discussing the options and they don't realize that their laissez faire attitude does not help! If you don't decide to do any of those options, are you going to look for a clinical trial?

Traumanurse: TPN for me was a love-hate relationship. I actually didn't necessarily mind not eating for 3 weeks, it was just the restriction of the water/other fluids that annoyed me. I did TPN two years ago during another particularly turbulent flare and had a lot of success. Or at least I think it was the TPN. I started Remicade at the end of my stay so I think it was the combination of the two that put me back into remission. I wouldn't mind trying the TPN again, at this point though it hasn't been offered as an option for me.

This is a terribly long post so I apologize. I did have an update regarding the clinical trial-- it's called "MEDI-2070" and is specifically for patients who have failed other Anti-TNF medications. At the moment, it looks as though I will qualify for the study, I just have to decide if I want to be a pseudo-lab rat or if I would rather try for the Simponi. My doctor is concerned that because I have burned through 3 other Anti-TNFs that the Simponi will have a severely reduced likelihood of working. Regardless, I kind of feel like that should be my first step before a clinical trial?

I don't know. Sorry for the long winded post again! And thank you so so much for your words of support and all the fantastic advice! Best to you all

 

[leahsmom]

Hi kkaras, so sad to hear you're having such a hard time, as well as all the other crohnies out there.
When mY daughters has perianal crohns was showing its ugly head she was rx flagyl for 3 months and cortisone enemas help with rectal inflammation.
She has been on LDN for a little over a year now and it's been a blessing I would defiantly try it before anything else, just my opinion. Within a week she felt better but it took at least 6 months for blood work to come back with positive results. I personally think the LDN may have helped the perianal crohns as well but it's hard to say because she took flagyl and LDN at the same time. Good luck to you I hope something works for you soon.

 

[Farmwife]

Hi and welcome,
Just to let you know I'm choosing to respond to this thread despite you misconception of
UofM.:tongue: GO STATE!:dance:

I hope you get answers soon. It's so hard to fell this way all the time.
My girl is much younger but has suffered for awhile but she smiles through life.
We also have her on LDN. We've seen good results but might add another drug to help her out for a bit.

Hugs from up north.

 

[Thunderstorm]

Hey Kkaras. Sorry to hear you're suffering so much. I don't have any personal experience with what you're going through, or the meds you have tried, but I do know of somebody who has gone into remission (and has been for over a year) since taking LDN. I think it's definitely the least dangerous of all the recent meds you've been looking into.

Best of luck.

 

[mcate238]

Hi Kyliegh! We sound really similar. I am 23 (graduated from UGA last May) and have had Crohn's for 13 years. Tried every medicine, 2 surgeries, etc. and I am in the same miserable place as you. Currently on Humira (every 10 days), Paxil, Methotrexate and Entocort for my Crohn's. I have had to reduce my hours at work and am probably going to have to quit my first job ever, which I really like. It is SO hard to be young with such a crappy disease, especially being a woman. I have been planning a trip to Europe for 6 months but decided today my body just can't handle it. Sounds like we are both at the end of our ropes. I am so sorry you don't have anyone to talk with about it. I am lucky I have 2 close girl friends w Crohn's. My mom forced me to attend Crohn's camp when I was little, and I actually ended up making a life long friend there. Coincidentally another girl at my firm (also 23) has Crohn's too. Let me know if there's anything I can do to help. College is such a hard place for Crohn's, especially when everyone else is partying and enjoying themselves.

MCS

 

[lgpcarter]

Hi Kyliegh,

Wanted to let you know that I am going to enroll in the MEDI2070 study. Have to wait 10 weeks for the Humira to be out of my system, and then I will start, assuming I qualify. The only hitch is that you can't have any active abscesses and I *may* have something new brewing at the moment, but hopefully resolved by the time they start screening.

Anyway, if you do decide to go for it, let me know and we can compare notes.

Laura