newly diagnosed need advise

Hi all i have spent most of the day crusing the internet trying to educate myself about crohns and found your site i was immediately impressed with how supportive all of you are.

My story begin last august when i suddenly developed chills general body aches and weakness....since i work in a emergency department as a physician assistant i consulted with some of my ER coworkers and like i  we all thought i had an infectious process and i started myself on cipro and flagyl.....my symptoms did reslove and resumed my daily activities but never really felt well.  then about 4-5 weeks later my "illness' came back again i started another course of antibotics did a tone of stool cultures and blood work and everything came back negative..including inflammatory markers...i was now concerned and contacted my primary who referred me to the only GI in our area but of course i couldnt get in to see him for almost a month and i was getting weaker and more ill with each passing day....soon i couldnt work...i then contacted a surgeon at the hospital i work at who was more than willing to do a colonoscopy....it was negative.  He told me he wanted me to see a GI for  a "second opinion.  He started me on a medrol dose pak and asacol...well low and behold my symptoms completely resoved and i remained symptom free until about 4-5 weeks ago....then it all started to come back slowly.....so i found out that one of the docs i work with has crohns and i spoke with him about what was happening and i told that i thought i had crohns as well....i had a great deal of relief after speaking with him and decided to start myself back on the prednisone and asacol because i didnt know how long it would take to get in to see him.....so i call the only gi we have here in this small college town in ohio.  I was able to get into see him about 2 weeks ago i gave him the whole history and told him i started myself on the meds and he got really angry and told me he wanted me to stop everything including the motrin i had been taking for the fever and aches and told me to get some blood work and come back and see him in a month....heck i couldnt wait a month and called him last week got in to see him he told me my lab work was all ok and i asked him how he since i had just had it done about 20 minutes before he saw me and then he said owe will i must have been looking at some old blood work....but i had never had blood work done at this clinic ever....i then told him i was having problems with my eyes and that my right calf hurt....he squeezed my calf and i had pain (positive homan's sign for DVT) and he told me "i am not impressed i dont think this is anything."   he then asked me how much diarrhea i was having and i told him not to much but that my biggest problem right now was the fevers, joint pain and extreme weakness.  He then said "i will take care of your diarrhea and you have your primary take care of your muscular skeletal issues".... I said will it is my understanding that all of these systemic symptoms could be related to crohns.  Relunctly, He told me i will check your blood work and if your inflammatory markers are elevated then my nurse will call you and schedule you for a colonoscopy....the next day the nurse called and i was scheduled for a colonoscopy for this past friday.  I left and was dumbfounded....the very first thing i thought was i hope i have never been that way with any of my patients.....i then drove directly to our local ER and was diagnosed with a DVT in my right calf....friday i went to the colonscopy i didnt see him until after the procedure and i had a doctor friend of mine with me who was my driver.....and when the GI doctor came out to talk to me he said "well you have crohns and that explains everything......well i let him have it with both barrels i was fuming....spitting mad.....

He now has me on 60 mg of prednisone for 10 days with 5 refills and started me on Lialda DR 1.2 gram tablets 4 talets at bedtime.  I have been taking the prednisone at night and the Lialda in the morning because i was afraid i would get an upset stomach if i took them at the same time.  He told me that if i dont improve then he will start me on remicade.   I am scheduled to see him this thursday.

I was writing this to ask for feedback on if i should continue to see this guy or drive 2.5 hours to columbus and see another GI.....lol in typing this out  i answered my own question and will send an email to my primary asking for the referral..lol

I am hoping that on thursday he will give me some information, maybe a referral to speak with someone about a diet or something... i dont  what to do next.  i now not able to work and continue to have diarrhea but the fevers and aches have and the weakness seems to be getting better.....  i am now afraid that i may loose my job....you cant do what i do for a living and miss work. 

i have read about the two main diets that seem to be used scd and the low residue diet...heck i dont know where to start i just want my life back i have a half finished barn i need to get done before the summer is over and i need to get back to work before i loose my job.....

Also i should mention that i am 56 years old and my sister has had colitis as long as i can remember...

sorry i was so wordy...lol if nobody reads this i still feel better now that i have typed it out....

thanx in advance to alll of you

jim

wow thanx justanother.....great idea about the prednisone...i'll give that a try....also i just found yet another diet but it seems this one may have a little more science behind it than scd but sounds like the same principles its called the FODMAP diet...anyone have any comments on these??

what about the use of probiotics

Hi Jammer and welcome to the Healingwell Crohns forum. You will find alot of love and support here from folks trying to live with this darn disease also.

I would look at getting another opinion. This is a life long disease and you need someone you can trust and will help you navigate life with Crohns, and the one you have is terrible.

I highly recommend you take the Prednisone as early in the morning as possible to avoid the insomnia side effects, and then the Lialda at night.

Probiotics are good to take with Crohns. I use Primadolphilus Fortify by Natures Way and it works well for me. Others use VLS#3, Culterelle or Align to name a few.

Also you will want to have your B12 and Vit D3 checked as we tend to be low on those. Also, diet is very individual. I personally follow a modified low res diet all the time as it works best for "me". Others follow the SCD or Makers Diets. These diet are very restrictive and must be follow to the letter to work properly, but we have had a few who have had success with them. As for the FODmap diet we have a member Kiwi12 I believe who is following this diet with some success.

Again welcome to forum, and ask any and all questions you have. Someone will surely have some experience to share. Hugs!

hi nanners thank you for the info can i purchase those probiotics at a drug store or is it best online?

hi marge
thanx for your response. i am originally from cleveland and could drive the almost 5 hours back home to be seen there and may end up doing that but i think i can find what i am looking for at one of the many fine teaching hospitals in columbus which is only 2 hours from my home.

thanx for your concern.......i coulnt agree more....learn as much as you can...

thanx again..jamie

Hi Kazbern
Your right the pains and chills are gone now and today my diarrhea has almost stopped completely had one this am and that was it....i have been on the prednisone since friday now......no abd cramping either....

ok ok i give i will go to the GI clinic.....i just hate going to the "Meca" cause its always an all day endeavor just getting around the campus at the clinic but everyone is right i have the opportunity that many would not have and i better take advantage of it..

Ok i will keep the sullfasalazine in mind...

why do you take the flax seed oil????

thanx for your feedback and support....jamie

Jammer, I take flax seed oil because it is an omega-3 fatty acid that I can philosophically tolerate. ;-)

Most dieticians, nutritionists and medical experts agree that omega-3 fatty acids have a natural anti-inflammatory action. There is evidence that using such a supplement provides benefit to people with inflammatory conditions. Most people who study this stuff say fish oil is the best choice for IBDers (lots of science that I haven't really parsed well, sorry). But I choose flax seed oil because

1) the mercury content is not going to be an issue
2) it doesn't involve killing wild salmon or menhadrin, the latter of which is dangerously overfished
3) I am never worried about fishy burps.

Hope that helps.

Probiotics can be bought at your local health food store. I get mine from the refrigerated section. Good luck!

I was only dx about 1 1/2 year ago so in many ways I am new at this.

But maybe I can help a bit as I rememeber when I was first dx.

The first thing I felt was relief after so many years of symptons and no treatment. Then I started reading and got real scared.  One thing I would recommend is to not think that everything that you read here will happen to you. Many folks here are really having a tough time and hopefully and statiscally the tough times you read about here will not happen to you.

I read a lot about diet including Makers, Life Without Bread, Breaking the Vivious Cycle, Nutrient Timing, Nourashing traditions, and a few others.

As all of said there is no one answer and more than one smart person on this site have the opinion that what you eat makes no difference. I do not believe that. I choose one of the diets and stuck with it, and after about 6 months I have not felt this good since I can remember.

You work in the medical field so you know how to read your blodd work but that was new to me.

The drugs are strong and you need to be aware of side effects.

Stress can make me sick so I have to be careful there.

Anyways the folks here are great. Full of information and caring and I hope you find the support you need as I have here

Dave