What has physically become of me?

[Meeshm2]

oo: Where do I even begin? Well, I have been battling Crohn's for 15 yrs now. Many ups and downs along the way, but I have been blessed with the ability to remain positive, most of the time :smile:
During that time, I have had 3 small bowel resections, 2 c-sections, and various other surgeries symptomatically related to my disease. It has been a rough road, but there were some smooth patches along the way. I was on Remicade for about 5 yrs. It was my miracle drug. Although it is no longer effective for me, Remicade gave me 4 years of QUALITY living with my family! Unfortunately, that was back in 2005 and I have not yet found anything to help me maintain any steady remission since then. I have BAD flare-ups at least 3 out of 4 weeks EVERY MONTH for the past 5 years. Nothing is helping. I have even tried alternative therapies with no luck. I have also tried Humira and Cimzia. The Cimzia gave me a horrible scare last spring when I was hospitalized and the CT found a huge mass of enlarged lymphnodes in my abdomen. I ended up having 2 separate biopsies (the 1st abnormal and the 2nd benign). I am now afraid of all this "poison" I am putting in my body, but what are the alternatives, right?
I am back in the hospital again right now. This is the latest kicker...who knew that lacking in protein can just shut down your body? I am in here for being malnourished. For one, my protein count is less than 1. This has caused my legs to swell UNBELIEVABLY, I can barely walk with zero energy level and my doctors are physically showing their fear, which is something I never see. FREAKY stuff. I do not have much bowel left, so absorbtion is limited and it doesn't help that I have been going to the bathroom 30+ times a day. It has been 1 week now in the hospital and nothing has really changed other than reducing my inflammation with steroids and calming my belly with pain meds (which I loathe)! Contemplating a visit to Cleveland Clinic to see if they have any thoughts. There is another med that is out called Tysabri that I may consider. But, I am really afraid of this one. The "rare" side effect is untreatable brain damage that ultimately results in death. Sounds lovely, right? Ugh.
I miss my life, my kids, my husband, my work, and especially my body. I am not this person that physically has become of me. Trying to remain hopeful and optimistic! That is my story.

 

[Crohn's 35]

:welcome: to the forum!! So sorry you are in the hospital, I too know all about it. Your story has a familiar ring to it. I have had 2 resections and have been on all the meds, Remicade was my big scare. Because you arent controlling the diahreah you are losing what little asborption for nutrients. Getting that under control is hard. Some people rely on Questran or diet with alot of applesauce or banana's. There are so many nutritional drinks on the market and being on Steroids as you know is gobbling up your calcium. I have had alot of lifestyle changes, and I too have my ups and downs, and as you do you have to be positive somehow (hate that word) but our families need us, as much as we need them. So much trial and error. I mentioned Tysabri to my Gi and he said no way. So I do take probiotics or eat yogurt, and on methotrexate, an old drug coming back. I hear your story loud and clear and you need a hug, so hang in there, lots of people here to help you get through some tough times when no one else can even fathom your life and pain. Please update us, let us know how you are doing. Great support here, welcome aboard!!

 

[Astra]

Hi Meesh
and welcome

Wow, that is quite a story,but I'm afraid I can't help you there, I haven't tried any biologics or had Bowel surgery. All I can do is send you a big cyber hug and welcome you to our family, lots of support here, you're no longer alone with this, hope you're ok in hospital and take care, thinking of you xxx
lotsa luv
Joan xxx

 

[sunflower]

Hi Meesh. So sorry you are in the hospital. I hate being there! Though I am not as ill as you, I totally hear you when you say that you miss your old body. I miss mine, too. I used to have so much energy!!

Tysabri is a scary choice. But, if you have tried everything, then you have to do something. I have been hearing great things about Methotrexate...

Keep us up to date. Everyone here is awesome! I am new here, too, but feel right at home.

Hope something happens soon.

 

[pmoreluvR123]

Hello there, Meesh! I'm also really new. You sound like you've been through so much in 15 years that no one could ever imagine going through in their entire lifetime. Methotrexate is an absolutely GREAT choice if you've already tried everything. I'm on it right now, and it has been a real lifesaver!

I've never heard of Tysabri before today. *Googles what Tysabri is*

Hang in there buddy! You came to the right place! I've only been here two days and I've had so much support it's not even funny. And yes, please keep us up to date on what's going on. Hopefully something good will happen for you!

 

[Dexky]

That's harsh Meesh, sorry you've been through and continue to go through so much. Hope you stick around so we can get to know the REAL you.

 

[Busy]

Hello Meesh, I can't add anything to the good advice the people here are giving to you but I just wanted you to know that I'm thinking of you and wishing you well.

busy. x

(edited to add the word 'add' which I'd overlooked!)

 

[Regular Joe]

Hi Meeshm2,

Welcome to the forum.

I'm a patient in the Cleveland Clinic, and I know the GI department pretty well. My GI is who they refer to as "the top cookie" in GI, but appointments with him are at least 3 months waiting. But I can also suggest others that are great, PLUS, if your disease is complicated, they will refer you to my GI which can elimnate the waiting time. I also know some of the ER and resident physicians, and I can tell you who are the best there, too.

I go in Wednesday for colonscopic surgery. I trust the Cleveland Clinic, especially the main campus physicians - thats where the years of experience congregate. But I also had to learn which physician was the best for me. Just because they work in Gastroenterology and Hepatology doesn't mean you're going to get a "good GI" of the bat. But if you'd like to have my "short list", give me a PM and I'll be glad to share.

It does sound like the Cleveland Clinic is a prudent idea for your situation.

I hope I can be helpful to you if you decide to "sign up" with the Cleveland Clinic.

Welcome again.
Joseph

 

[sunflower]

Meesh, if you are able, take Joe up on his offer! I have heard great things about Cleveland Clinic.

 

[saidinstouch]

I your situation you might have to consider the Tysabri. The cases of PML in crohns patients tend to be less fatal because it is easier to diagnose neurological side effects in crohns than it is in MS. They also know what to look for in the patients and ways to reverse the effects of the Tysabri through plasmaphoresis to reverse the immunosuppression and allow the body to fight off the virus. It isn't a guarantee you won't suffer some side-effects or be able to live with the threat of PML daily (I know I couldn't), but it is definitely less risky than it was a couple years ago.