Still feeling poorly

[Manzyb]

I had the resection of my terminal ileum about 3 weeks ago. I knew going into the surgery that I was still going to have active disease in my colon and rectum. These areas were more mild than my obvious strictures and blockage in the part that was removed. I'm relieved that the worst pain is gone, but I'm still having all kinds of trouble with diarrhea, bloating, gas pains, and cramping. I'm still going to the bathroom anywhere between 10-20 times a day. I was given medication to help stop the diarrhea, but when I take it the pain/cramping gets even worse. I guess I feel a bit defeated. In the entire 12 years I've had the disease I've never really felt good and thought this was my shot to feel great again. I know I'm only 3 weeks in after the resection, but am currently JUST on prednisone. My next appointment with GI is in 2 weeks. I tried to get in earlier to see him, but he has a freaking waiting list that is ridiculously long for cancellations. I know I'll be starting Tysabri after the appointment so I'm really hoping that gives me some much needed relief. I've tried all other biologics and at some point or another have failed them all.

I feel pretty depressed and cry a lot. My life feels a bit out of my control at the moment. I know things will get better, and I need to try and stay strong, but that doesn't always feel possible.

I think this was just more of a vent than anything, but has anyone else had this problem before? Having a resection, but not having all diseased parts removed?

 

[bmeat]

im sorry to hear about your pain have you ever been tested for any infection? does your stool smell rancid? if so maybe an antibiotic that works locally in the gut would help more than you think, in addition to an anti inflmmatory like predisone

it is worth a shot. i understand antibiotics are bad for the gut flora, but if you can get on it for a peroid of time, have it help, and get off of it, it may provide much help.

vancomysion will kill much more than just c-diff. unfortunately its very expensive

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000282/

 

[DustyKat]

Hey Amanda,

What were you prescribed for the diarrhoea?

Just a thought, but Sarah found that Questran, Lomotil and Imodium caused her bloating and cramping whereas the psyllium doesn't.

I so hope you start feeling better soon! :hug:

Dusty. :heart:

 

[PVail]

Hi Manzyb, Sorry to hear not feeling good but this will pass. My father had the the same operation three years ago and it took him about 8 weeks to come around. Frankly it has changed his life even though he does have some symptoms he has improved a lot. try and stay positive. It looks like im heading the same way as i have the same or similar problem but in Ireland you have to wait and wait and wait. Good lick and hope you feel better .

 

[kossy]

Amanda, I know this isn't what you thought would happen. I know it's been three weeks but after any major trama, like the surgery you had, your whole body is going to be out of wack for sometime. Since Crohn's is an autoimune disease it may take longer for your body/digestive system get back on track or at least stop all the extra nonsense it's been giving you lately.
Stay strong, we're all here for you... you are not alone.

 

[Dexky]

I'm sorry to see this Amanda! I hope Dusty's tip can offer some relief. I guess you've seen her mention psyllium in the past, but just in case...she means natural psyllium husk, not the store bought flavored stuff. I'm sure you'd have to visit a health-food store or vitamin shop. Good luck!

 

[Manzyb]

@ Dusty.. they gave me something called Cholestid. It's suppose to help with cholesterol as well as diarrhea. Crazy. I really need to get some of the Psyllium husk and try that out. I'm going to be at a health food store today, I'll look for it!

@Dexky, thanks for telling me its the natural kind and not the metamucil stuff!! My mother in law had bought me some of that, and I had some doubts about it. She said it has the psyllium husk in it.

I'm going to get some probiotics too and maybe some digestive enzymes? I have the GI doc next week.

It's so nice to have people here who listen!! I try to not talk about it with my family, I feel like it just wears on them when I always say I'm not well! Anyway, today is a better day, mentally anyway I did have a really good date with my husband yesterday and that was really nice!! Gave me a little boost.

 

[Manzyb]

oops! It is spelled Colestid.

 

[DustyKat]

Colestid is similar to Questran and yes! natural psyllium husks. Sarah tried preparations like Metamucil and they also caused bloating and cramping. You can get them in the health food section at the supermarket.

You need to follow similar precautions to the colestid when taking your other medications and supplements. Do not them within an hour before or two hours after using the psyllium as they can affect their absorption.

Dusty. xxx

 

[Angrybird]

I think the guys have already got things covered with stuff tomtry so I am just sending lots of hope you feel better soon hugs :hug: Fingers crossed the husks help ease things. Glad you had a good time with hubby though

 

[Manzyb]

Thanks AB!

@ Dusty... I cannot believe how much you know about everything!!! I can tell you've done your research! I always look forward to your advice.

I'm definitely going to get some of that stuff today at the health food store! My mother in law is getting me some gluten free stuff and god knows what else. Hehe. She's convinced I have a gluten allergy, so I'm going to go with it and see if gluten free stuff helps at all too.

I called the GI office today and they are suppose to be going ahead and getting the paperwork done to getting the Tysabri approved for insurance. Hopefully they'll get hopping on that so I don't have to wait a month after my appointment! Tricare is so good at getting me the meds I need though.

The Tysabri stuff seems a bit scary and I know its seems a bit taboo around here, but it's my last option and I'm ready to dive in and get better!! After all... I need to feel good for my upcoming CRUISE!!

I really need to de-stress. I think most of you all know that my husband is in the Marine Corps and we are currently awaiting orders to be moved again in the summer We were lucky last time this happened and got moved an hour away from our family. This time we won't be so lucky. We're thinking we're headed back to California or North Carolina.

ANYWAY! LOL I'm a chatter little **** today! :ylol2:

 

[Angrybird]

Oooh a cruise how lush! They defenetly need to get things sorted for this, it is a top priority It sucks about having to move again though.

 

[tishbite]

awee i'm sorry to hear the surgery has not relieved your symptoms as much as you hoped for. i'm having the same problem actually. it's been a little over a month sinse my surgery and i'm still having awful diarrhea and cramping, also i'm still vomiting. i haven't even had a follow up appointment with my surgeon because they wont set one up for some reason even though i call. not to mention i'm waiting on my humira to be re approved so the only thing i am taking for my crohn's is methotrexate. it's hard dealing with crohn's especially after getting a surgery that is suppose to give you some relief.

 

[Dexky]

Chat away Amanda you certainly sound more upbeat! Good luck!

 

[xJillx]

I am sorry to hear you are still feeling unwell.

I sure hope Tysabri will give you the relief you deserve!

Hang in there, Amanda.