New and Confused

[agirl65]

Hi all, I'm Amanda. I'm new here, yet not new to having issues. I'm really not sure where to start. I've had problems with my digestive system as long as I can remember, but it really started getting bad in the last several years. I've had a stomach ulcer (no H. pylori) and have had several colonosopies that really didn't show anything except one polyp that the Dr. removed about 3 years ago. Last year I had another colonoscopy and a Dr. filled in for my regular one and pretty much said that it was okay. Fast forward to a couple of months back. I end up in the ER with pain, bleeding, nausea, and they send me home and tell me to follow up with my GI doc. I do- and he orders another colonoscopy and says "so we're going to check on your ulcers again?" Again? When was I every diagnosed with ulcers there? Sure enough, he says I have ileitis and starts me on Asacol, and Levsin and orders labs and such. My next visit is with the ARNP and she confirms everything he's said and keeps me on the Asacol and adds Zofran for the nausea and gives me Tramadol for the pain. So now it's August and I'm still having pain and nausea/vomiting, no bleeding though and the new ARNP basically just told me, well, nothing. She said she isn't diagnosing me with Crohn's because my inflammatory panel came back normal (but I've been on meds for over a month) and my biopsy was normal and she wants to put me on Flagyl -just because -(she can't give me a definite answer why) and puts me on a probiotic (okay, that's good) says I still have to take the Asacol and Zofran as needed and Levsin for cramps and Tramadol for pain, but she says I don't have Crohn's. Well, that's all well and good, I don't have it- yay. Um, why am I still taking these meds then? Can I have the symptoms and not the disease? She ordered a small bowel series, told me to be on the BRAT diet indefinitely, ordered the antibiotic and sent me on my merry way. I am really confused... Thanks for taking the time to read through all of this.

 

[Scaryman]

agirl,

Are you trying different crohns diets? Like low residue, simple carb diet, or keeping a diary of what works and doesn't?

 

[agirl65]

Now when I was going through (what the Dr. told me) was a flare up, I could only handle smoothies. Anything else made me sick, diarrhea, or hurt like crazy. I added as much nutrients that I could to my smoothies and have a few a day. I did that for a few weeks and I assumed I was able to start eating again because of the Asacol starting to work. Maybe I need to rethink this.

 

[Scaryman]

OK then that's the same diet i am on, wome what.
the rule you should go with is if you cant make it mush y the time you swallow it, DON'T EAT IT! for example, when you chew, and chew celery you get a ball of fiber right? no matter hjow much you chew, same thing with fruit skins like apples, peaches, some grapes skins, potato skins.
We cant digest them, if your ok with smoothies, try baby food. ( I know it sucks) but believe me it works for me. or you can grind your food in a blender. mashed potato's are great as long as they are not instant. I love boost shakes with a banana,:dance: add some Greek yogurt ( if you are OK with diary.) :wink:

So basically just remember for now as you try this out, just chew and chew, if you cant chew it into mush like chicken skins, then don't eat it. Id be interested in knowing how it copes with your gut.

 

[Beach bum]

Hi , so sorry you are having such a miserable time

I have also been given Flagyl (metronidazole) without much explanation, I was thinking that probiotics might be a good idea after, so which ones have they given you ?

I have found a low fibre diet to be very helpful for symptoms, as not feeling so full and bunged up stops me feeling so sick.

 

[agirl65]

Now that's a good rule to have!! My mother has UC so she's told me some things to stay away from (nuts and fruit skins and such). I pretty much steer clear of dairy and use soy milk or rice milk in my smoothies. Bananas are a staple right now, easy for me to tolerate and great in a smoothie. I actually tried an EAS shake and really like it- good protein low on carbs and fiber. Fiber is a no-no for me I've found...

 

[agirl65]

Hi , so sorry you are having such a miserable time

I have also been given Flagyl (metronidazole) without much explanation, I was thinking that probiotics might be a good idea after, so which ones have they given you ?

I have found a low fibre diet to be very helpful for symptoms, as not feeling so full and bunged up stops me feeling so sick.

Hey there. I certainly appreciate that. I'm still not 100% sure I'm going to take the Flagyl since she could give me any indication for it other than to shrug and say "we're just going to try it". The probiotic I was given is Florajen3; now that, I think is a good idea. I just feel like I had answers before from the Dr. and now the ARNP has me all confused again.

 

[David]

Hi there and welcome

Are your doctors aware that your mom has Ulcerative Colitis? When they found the ileitis, did they take biopsies of the inflammation? If so, what did the biopsies say?

 

[michaelearnest]

Hello Amanda - welcome to the Crohns Forum. Sounds like your going through a tough time with the doctors. This IBD stuff is very confusing but hopefully they figure out your situation asap so you can put that stress behind you.

 

[agirl65]

Hi there and welcome

Are your doctors aware that your mom has Ulcerative Colitis? When they found the ileitis, did they take biopsies of the inflammation? If so, what did the biopsies say?

Hi David! Yes, I told my GI that my mom has UC and the biopsies came back normal. I have the doctor's dictated report, (and he told me after my test) that "regardless what the biopsy says due to persistent ulcers there and the symptoms" he said I have Crohn's. Is that correct? The doctor diagnose me regardless of what the tests say?

 

[agirl65]

Hello Amanda - welcome to the Crohns Forum. Sounds like your going through a tough time with the doctors. This IBD stuff is very confusing but hopefully they figure out your situation asap so you can put that stress behind you.

Thanks for that! It is confusing and frustrating, I'm tired of not feeling well...

 

[David]

Various things:

1. People can have Crohn's with a normal inflammatory panel.
2. That the biopsies came back normal decreases the chance that it's Crohn's.
3. That your mom has UC increases the chance.

I realize that doesn't help.

NOW, ulceration doesn't always mean Crohn's disease. There are other chronic and acute conditions that can lead to ulceration. Of course, Crohn's can cause it as well.

One step further, as you have ileitis, Asacol is likely the wrong medication. It's formulated to be released at ph 7.0 or higher which means for most people it'll be released in the terminal ileum in a manner where it treats disease in the colon which is why it is meant to treat Ulcerative Colitis.

That you're having nausea and vomiting is concerning to me. Have they done a pill cam, CTE, or MRE?

You need more testing and something definitive. If your current doctor won't do that, a second opinion might be in order.

 

[agirl65]

Hey David, thanks for trying to help! I have been with this GI doc for about 4 years now, and he's been aware the whole time about my mom having UC. I had ulcers a year ago (a different GI doc had to fill in for my regualar one) but he did not tell me they were there. This time when I went in (bleeding, pain, nausea/vomiting, weight loss) that's when I found out I had ulcers previously.

He said he put me on the Asacol for two reasons. 1. I'm allergic to sulfa, and 2. he said it would help since it does not release until it's in the terminal ileum.

I've only seen the doc once in the office and 4 out of the 5 colonoscopies I've had. He ordered a gall bladder test, lab work, and x ray. His ARNP just ordered a small bowel series I'm having on Sept 7th, and I do not go back into their office until November. I work at a hospital and if I see another GI doc it's out of network and I have to pay out of pocket, and that's just not an option right now.

I'm not sure why they never ordered a pill cam, maybe since HE saw the ulcers he did not deem one necessary?

 

[Ckt]

Hi there! I am one of the weird ones that has always had a normal inflammatory blood panel no matter how much inflammation is going on. It's frustrating at times because objectively,there's just not much to analyze. I can't have cat scans anymore this year because I have had so many they worry about cancer risk..so do I! So unless I present with symptoms screaming bowel obstruction or absess I am either blown off or well..blown off! I'm on humira right now but honestly cannot tell any differerence on and off it.
The doctor who diagnosed me 10 years ago from a full thickness biopsy from bowel removed during surgery thinks I probably had it since I was 20..I'm now 51 and wasn't diagnosed until I was 40. I'm not sure why..god knows I had had way too many surgeries on my gut!
Hang in there!if you need to,go to another gi doctor for a second opinion. I'm doing just that..back to the great IBD clinic where that doctor practices.my gi doctor her is very supportive and welcomes another perspective..to me,that's a sign that my doctor here is a good one!!Don't stop until you get answers.
Telling someone to take Flagyl for laughs and giggles is not on in my opinion.that borders on negligence.
Call the actual doctor and have a little chat..and explain about getting confusing info from the aprn..if he thinks you have crohns there must be something that is pointing towards that..like your symptoms?!i know those symptoms can be present in a number of conditions but they are sound like IBD to me..acts like a duck,walks like a duck..

 

[agirl65]

Hi there! I am one of the weird ones that has always had a normal inflammatory blood panel no matter how much inflammation is going on. It's frustrating at times because objectively,there's just not much to analyze. I can't have cat scans anymore this year because I have had so many they worry about cancer risk..so do I! So unless I present with symptoms screaming bowel obstruction or absess I am either blown off or well..blown off! I'm on humira right now but honestly cannot tell any differerence on and off it.
The doctor who diagnosed me 10 years ago from a full thickness biopsy from bowel removed during surgery thinks I probably had it since I was 20..I'm now 51 and wasn't diagnosed until I was 40. I'm not sure why..god knows I had had way too many surgeries on my gut!
Hang in there!if you need to,go to another gi doctor for a second opinion. I'm doing just that..back to the great IBD clinic where that doctor practices.my gi doctor her is very supportive and welcomes another perspective..to me,that's a sign that my doctor here is a good one!!Don't stop until you get answers.
Telling someone to take Flagyl for laughs and giggles is not on in my opinion.that borders on negligence.
Call the actual doctor and have a little chat..and explain about getting confusing info from the aprn..if he thinks you have crohns there must be something that is pointing towards that..like your symptoms?!i know those symptoms can be present in a number of conditions but they are sound like IBD to me..acts like a duck,walks like a duck..

Hey Ckt, I actually have an appt with my PCP Friday, I haven't seen her at all throughout this so maybe she can shed some insight, she's great and will listen to me as long as I talk. After my small bowel series I'm going to see if I can just bypass the ARNP and set up a visit with my GI.

I agree about the Flagyl, if you can't give me a definitive answer as to why I need to take it, I'm not taking it then. Where I work, we treat people that are resistant to almost every kind of antibiotic due to overuse. So, I'm not too keen on taking something unless I need to.

 

[Liam]

Hi Amanda,

Welcome to the forum.

I would suggest keeping a written food diary of what you are able to tolerate and what doesn't work so well with you. It will probably change from time to time, but if you are having a bad day or just in a situation where you need to make sure you're not in too much pain or will go to the loo too much, having a written record of safe foods and drinks will really help in such situations.

Best wishes,

Liam

 

[agirl65]

Thank you!! You are so right, it does change from time to time and that is so frustrating. I can have a sandwich and do fine one day, and two days later same sandwich will make me sick. The past couple of days have been really bad and I feel like I'm being such a baby about it. Other people have put up with this for so long, and I'm just starting, so what do I have to complain about? Sigh...

 

[Liam]

Thank you!! You are so right, it does change from time to time and that is so frustrating. I can have a sandwich and do fine one day, and two days later same sandwich will make me sick. The past couple of days have been really bad and I feel like I'm being such a baby about it. Other people have put up with this for so long, and I'm just starting, so what do I have to complain about? Sigh...

You have every reason to feel down, sorry & complain. It's all natural and all part of the journey. People who don't have IBD, don't always appreciate how painful and distressing our condition is.

The diagnosis is the toughest part, in my opinion. It's a time of uncertainty, and you don't always know what the outcome is going to be and it's tough getting to grips with IBD. And it's scary when you're in pain and discomfort and you don't know what's causing it.

Amanda, things will get better though. At times it will feel hopeless, and this is how I first felt when I was diagnosed, but medication can and does work wonders and surgery can change things drastically, too.

Best of Luck,


Liam