Help !!!

[Magda]

Dear all,
First i would like to say i have an IBD but not sure if it is ulcerative colitis or Chron. I am from Romania and i must say doctors here are a mess in what concerns IBD`S. I had my first attack in 2008 , lots of abdominal pain, diarrhea ( i went to the bathroom 20 times a day / night). After a few months when doctors said i have ulcer !!!! i went through a colonoscopy and bipsy and the result came : ulcerative colitis . I was put on Prednisone and Salofalk and in a few days i was as good as new. Then in 2010 , when i was at the seaside a very bad attack occurred. Much more pain than in 2008, much more trips to the bathroom , my first doctor couldn`t handle it and sent my to another doctor to the hospital . I stayed there 8 days on IV`s ( antibiotics , cyprofloxacine ) , prednisone and after that Salofalk. After 2 weeks feeling a little better , still on the treatment at home : Prednisone and Salofalk. After 3 months they said i am in remission and put off Prednisone, just on Salofalk. I wasn`t pleased with the treatment and doctor ( my hair began falling off and other side effects) , he didn`t communicated with me, i still had pain but he said was fine. Forgot to mention that after the colonoscopy and biopsy he said i have Crohn`s. Went to a third doctor and when he saw the same results he said i have UC not Crohn !!! Took me off Salofalk and gave me Pentasa ( 500 mg twice a day) . This was last year . Since then i have confronted with a lot, but now is getting worse. I have constant diarrhea ( going to the bathroom just twice , max. 3 times a day ) , but feeling like crap after, constant pain, bloating when the diarhea stops , all kind of abdominal pain. And i can`t get my stool to normalize. My third doctor says i have IBS besides the UC or Chron because the colonoscopy was normal . I don`t trust that so much , i think i still have an inflammation and that is why i have all this symptomps. Has anyone else confronted with this ? What do you suggest i should do ? I am so tired of feeling this bad

 

[Jennifer]

Hi and welcome to the forum!

What other tests did they do besides a colonoscopy? Blood work would show if there was still active inflammation where sometimes its not always noticeable in a colonoscopy. Have you had any blood work done recently?

 

[Magda]

Thank you for fast answer ! No, not any blood work ...maybe they will done it if i told them is necessary ..great doctors, huh ? I think i will go to the clinic, do some blood work and then shove it in my doc`s ass When i told him i was feeling bad , he said ...ohh...no point in showing up here, i know your disease by hand, take some Zir-fos * probiotics * and problem solved ...He is treating my condition like it`s nothing serious ...and i am confronting nasty symptoms every day ...he says it is my irritable bowl who is giving me a hard time ...but don`t think so ...i am so tired of these docs and feeling bad

 

[skippy111]

hi Magda,
Im sorry to hear you are going through all of this.

I can't believe that these Dr's are not doing any labwork on you. I hope that you are able to get labwork done because it sounds to me like these Dr's are missing something.

 

[Magda]

Hi Skippy,
Thanks ! Yeah , they are awful ! I`m sure they are missing something. And i don`t know what are they waiting for, to worsen the flare until i get to the hospital ? I don`t understand , still on my feet, still going to work ( which is a lot of stress, i`m running the import department in a chemical manufacturing site and now we are also in privatization ) and have these very nasty symptoms. Why aren`t they doing anything ? Sincerely, i am at my third doctor and don`t know where to go next . Not to mention i have to travel a lot for business, also i am in London at 3 months because my boyfriend lives there and all of this is becoming very tiresome. I`m out of options for the moment, In general, i`m very optimistic , but being like this for so long, seeing that nobody ( i am referring to the docs) wants to do something...it is sooooooooo frustrating .

 

[skippy111]

Are you seeing a GI DR or just General Practicioners?

 

[Magda]

Hey Skippy ,
Sorry , finished work at the office and rushed home as i had guests . Please believe me , i am a well-educated person , i have an MBA degree, i`m not the kind of person that doesn`t investigate through the medical environment and hopes to have answers from the internet . I`m seeing the 3rd GI now and still no good. Here, there aren``t a lot of IBD patients and the doctors are not specialized in these diseases . Actually , i called again my GI today and shhe said : calm down, there is nothing to worry, i know your condition by hand , you are not having serious problems , it`s your IBS again, you must have been through a stressful period and you tend to get anxious and that is causing you the symptoms. I said ok, but shouldn`t we do some blood work, a colonoscopy, something ? Noooo, no need, you don`t have anything , understand that your condition is stable and will be and your only problems are related with the irritable bowl syndrome, take dome Debridat ( this is the name here ) and relax for a while . I don`t know ehy she refuses to test me. Ok, eventhough let`s say she was right , wouldn`t be a relief for the patient to test him and elimiate all doubts ? Anyway, the day after tomorrow i am seeing another GI ( the 4th one ) . He works in the best hospitals in Bucharest and has a lot of experience . I am reallly curious what he will say . Crohn or colitis ? The score will be 2:2 or 3:1 ? )) Just kidding . I will go to 100 doctors , not 4, until i will get my answers i shall not rest

 

[David]

Hi Magda and welcome to the forum. I'm really glad you joined! Here's my suggestions based upon what you're saying:

1. Stop going to the idiot doctor telling you this is IBS without doing the proper testing to exclude other causes. Find a good gastroenterologist.

2. You need your small intestines properly checked. Ask for a pillcam (capsule endoscopy), small bowel follow through, or maybe MRE. These will check your small intestines for issues.

3. Ask to have your vitamin B12, vitamin D, and folate levels tested. When you get those results back, let us know the specific numbers.

4. If you can't get in to see another doctor and this one keeps saying IBS, ask for a fecal calprotectin or fecal lactoferrin test. Those are elevated in IBD but not IBS.

5. Research enteral nutrition and see if it's available there. It's a wonderful treatment option.

6. Look into the paleo diet or specific carbohydrate diet. Both have helped many people with Crohn's Disease and UC alike.

We're here for you

 

[skippy111]

Never Give up Magda!

When a Dr says they know your disease like the back of their hands that usually means he or she is not open to the new research or just plain lazy..

The american society of Colon and Rectal Surgeons has their information online for DR's , Patients, and the public..

I agree with David, all of the reccomendations he mentioned are good.you need a colonoscopy and lab work... at the very least..

Your New GI Dr would probably want to do current tests as you are having specific symptoms. The lab work will check your levels and also check for inflamation.
The colonoscopy will give the DR a better look at your colon and intestines..
from there, the results from those tests will help the DR to know which tests to order from there...

The Pillcam test is good, and so is a CT SCAN

The Paleo juice is great because it has cactus extract in it.

Im Glad you are going to a new GI,
I hope you have better success than with the other one.

 

[Magda]

Hi David and thank you for your message. If i tell them these things they will say i am mad The only way is to go to a clinic and ask for this typical tests and then see the results . The Gi here are awful ..maybe the lack of experience, is not a common disease here , don`t know how a got it But believe me, last year when a had a few symptoms and the doctor said again that the ibd is under control and the Ibs is affecting me , even my mother thought i was mad . The doctor gave me some kind of treatment for IBS , the symptoms dissapeared in a month ..but i bet it was a pure coincidence ...She is keen on saying i do not have symptoms from my IBD ( she insists like my first doctor that is not Crohn is UC ) that is in total remission and probably i won`t experience again a relapse...she is brave in stating that, isn`t she ? )) Anyway , next year i will probably move to UK and have better doctors.
For now, i have an appointment on Thursday at the 4th GI. I want to hear other opinions, first of all about my disease , and secondly about my symptoms and treatment plan. Couldn`t hurt , right?
Once again, thank you for all the support, i am really glad i found the forum.

 

[Magda]

Yeah, Skippy, dunno, going through all this doctors is like going from dumb to dumber Thank God that i don`t have often relapses or need surgery because they would have probably killed me by now ) but i can not compromise with this condition, why having symptoms when i could have none ? i am sure it is possible ...only meds i`ve been through so far are prednisone, when i had the bad relapse in 2010 , they didn`t knew how to treat me and sent me to the hospital , also cyprofloxacine there ( antibiotic) , and after remission Salofalk , which was changed with Pentasa last year . No changing the treatment , no nothing ...there are so many options out there , but none tried on me, great, huh? No supliments , no vitamins ....if i survived this , i am sure that with a good doctor and a good treatment i can feel like myself again ..but the quest is the hard part here ...