Doc is happy with my "numbers"...i feel terrible

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josef Dieckman
Regular Member


Date Joined Nov 2003
Total Posts : 291
   Posted 9/5/2017 1:13 AM (GMT -7)   
Had a c dif infection and some inflamation.
Got on antibiotics and Imuran.
Felt better on the antibiotics....but when I was done with them, went right back to being sick. My guts are as tore up as bad as before I took the antibiotics, I'm still taking the imuran. Told my doc....she looked at my lab results and said everything looked great.
I'm GD miserable over here....but my"numbers look great"??????
She offered me a regiment of Apple cider vinegar and green tea extract, plus probiotics. I'm about $hitting the bed again, literally....but she wants me to drink vinegar.....
Holy hell, I don't know what to do anymore. I've all but got on my knees and begged for remicade. They won't prescribe it.
I need help and the people I pay to help me won't do so.
I'm in a small town with few Dr options.

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3321
   Posted 9/5/2017 4:18 AM (GMT -7)   
It may be difficult, but you need a new GI. Do you have a larger city within a few hours drive of you?
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

josef Dieckman
Regular Member


Date Joined Nov 2003
Total Posts : 291
   Posted 9/5/2017 6:38 AM (GMT -7)   
Eugene or Roseburg.
2 hrs

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 724
   Posted 9/5/2017 8:27 AM (GMT -7)   
I am sorry you are not feeling well.

Personally, I drive over 2 hours one way to see my GI. It is worth every minute of it. I know that my case is different from yours...but if I had seen my doctor first I would have been on Remicade much quicker, I would not have sustained as much damage and I may not have ended up with a colostomy.

On the number portion....my numbers all look great....and I continue (while having and maintaining great lab numbers) to have pain, extreme fatigue, fistulas, extreme heat intolerance, nausea, uveitis, arthritis, and skin issues. I think you need a doctor that thinks out side of the box. My doctor told me once...well you numbers look good....and I went to see him again with a new fistula. They don't understand it, my body shouldn't be able to have great numbers while having all the other issues....but after two years my GI and colorectal doctors know that I don't follow their norm.

Hope you find help

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 999
   Posted 9/5/2017 8:53 AM (GMT -7)   
I agree with Clo, It is worth to go the distance. my doctors are around 2 hours away but they always consider what I am saying as well as what the labs say. I did not get that kind of help from the doctors closer to me. once the flare is controlled you wont have to travel as much. You need a second opinion!

noodlesnoodles
Regular Member


Date Joined Nov 2015
Total Posts : 273
   Posted 9/5/2017 3:22 PM (GMT -7)   
Have you tried asking for Humira? Maybe your doctor would be more open to an injectable.

But I agree you should consider seeing a GI in the city.

I grew up in the middle of nowhere, Oregon, with no doctors, hospital, etc. So, I feel your pain. Even now, living in a larger city, there is only 1 GI clinic so I don't have many choices.
28 year old female
Issues began in July 2014
Capsule endoscopy in late March 2017 showed "suspected Crohn's Ileocolitis"
After colonoscopy on April 14, 2017, was officially diagnosed with Ulcerative Pancolitis (w/ backwash ileitis)
Current meds: Apriso 4 x daily, Prednisone 30 mg, Canasa 1000mg suppository nightly, B12 injections monthly, 50,000 IU Vit D weekly
Started Remicade July 11, 2017

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1653
   Posted 9/5/2017 5:18 PM (GMT -7)   
What 'numbers' are you (or your doctor) referring to?

Regardless, there are no 'numbers' that always tell the full story. They're only part of the picture. That's why symptoms and scope/MRI results are always important as well, to give the full picture.

GatorGut
New Member


Date Joined Sep 2017
Total Posts : 1
   Posted 9/6/2017 3:13 PM (GMT -7)   
I'm sorry you're not feeling well and understand your frustration. I've been having a flare since May, bloodwork and stool sample in June that looked "perfect" but I was still bleeding, finally requested a colonoscopy in late July to prove I wasn't crazy. There was bad inflammation and rectal bleeding. Canasa was prescribed and the bleeding stopped but I've continued to feel worse over the course of the past 6 weeks (frequent BM not formed (9 yesterday), burning pain primarily in the left side, joint pain, headaches, dizziness and the worst fatigue ever).

Went for a follow-up with my GI yesterday and he said "your colon looked great except for the rectum and that's fixed since you're not bleeding anymore". He thinks it's IBS and gave me an antispasmodic which hasn't helped with the pain at all today and only made me more dizzy.

My primary doctor is setting me up with a second opinion and this morning more current bloodwork came back and is still "prefect and totally normal". My gastro also called and wants me to stop my imuran to see if my pain, dizziness, headaches are the imuran disagreeing with me but that leaves me exposed to a worse flare but in his mind "as long as I'm taking casana my colon should be fine".

This has been so hard and I've basically begged for remicade but according to my gastro the symptoms I'm feeling couldn't possibly be connected to my crohn's since my labs came back normal.

Does anyone else have experience with this? Also has anyone had luck asking their doctor for remicade and getting approved?

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10098
   Posted 9/6/2017 5:26 PM (GMT -7)   
@GatorGut - ask for another colonoscopy. It's the only way to get these idiots to realise that something's wrong. If you've got Crohn's colitis, the canasa probably won't be doing a lot (even more so given that it's only 1g of mesalazine - the maximum dose is 4g). And mesalazine isn't very effective for Crohn's in general. It's a topical med which only works on the inner lining of the colon, which is fine for UC, but less so for Crohn's, as Crohn's can affect all layers of the bowel.

Finally, change GIs if necessary. Some of them really aren't very good, and fob the patient off or don't seem able to deal with exceptions to the rule.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)
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