I just want answers.

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Fawn0209
New Member


Date Joined Sep 2009
Total Posts : 15
   Posted 9/4/2009 12:58 AM (GMT -7)   
The specialist I see is very foreign and I can't understand half of what he says. I also have an extremely shy disposition and have trouble speaking up when I need to, even where my own health is concerned. I am 23, and went to the hospital in early April this year complaining of extreme level 10 abdominal pain. After being examined and asked questions, I got a CT scan. He said he saw swelling in four places, and it looked as though I could have something called Crohn's Disease. He had no GI specialist on staff, and transferred me ambulatory to another hospital. I was there for 4 days, 3 nights, on morphine and tresidone (sp??? something intended to help me sleep?) all the while. I had a colonoscopy, and they took biopsies to make sure it wasn't cancer. The biopsies were clear, and I was told I had severely active Crohn's Disease. They also discovered I've had a life-long immunodeficiency called Agammaglobulinemia, and never even knew it. I was put temporarily on Flagyl, Ciprofloxacin, and Vitamin D Capsules. They gave me a prescription for Azathioprine, but instructed me not to take it until they called and said my blood labs showed that I was stable enough to take it.

In June, the foreign doctor took me off of Imuran and put me on Cimzia, because Imuran had absolutely no effect on me, except seeming to make me feel sickly all of the time. I'd also expected that he understood I was in severe pain, as I had told him this, but he didn't give me anything at all until I finally broke down in his office and begged him to do something about it, explaining that I'd been in excruciating pain for the last three months and absolutely couldn't take it anymore. He gave me Percocet 7.5, which didn't curb the pain at all, but did make me not care at all that I was even in pain. I also reported to him that I'd gained 30 lbs. since my diagnosis, which wasn't consistent with most text I'd read on Crohn's. He hasn't been at all concerned with the issue, and I've since gained another 15.

In August, I began having severe pain much higher in my abdomen, on my left side. He immediately scheduled an endoscopy (which I had on Monday), and they found patchy erythematous mucosa in my gastric antrum (and I haven't the slightest idea what that means), my esophagus appeared normal, as did my duodenum, but they took biopsies of the duodenum anyway, because of what they'd found in the gastric antrum. Now I have a small-bowel follow-through on Sept. 10.

I would really just like to know where I'm at. I haven't had any surgeries, and I don't have an ostomy, so I gather I'm more fortunate than many (so far), but I have no idea where this is headed, what I can expect realistically, what sort of condition I'm in currently (Am I in good shape, bad shape? How severe is this?), etc. I don't know what it is they're looking for with performing the endoscopy or the SBFT. I just want to know what's going on in my body. It scares me, and my doctor isn't very helpful.

What I CAN gather is that none of the medication I've taken so far has even put a dent in my disease, nor prevented it from reaching other parts of my GI system. Which is unnerving to say the least. I joined this forum to find other patients accounts of cimzia, but the few I've found seem to be giving very positive reviews, and that's just not the experience I've had.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/4/2009 1:32 AM (GMT -7)   
*sigh* I get so frustrated when I hear about doctors throwing clinical language at their patients without even taking the time to explain things properly.

It sounds to me as if the doctors are still trying to work out exactly what's going on with you, hence all these extra scopes and scans. A colonoscopy looks at the lower part of the bowel, an endoscopy looks at the beginning of the GI tract, and the SB follow-through can help doctors see what's going on in the middle part, where scopes can't reach :-).

It sounds, too, as if they are still trying to work out an appropriate medication regime. Don't despair: you have a lot of medical options yet, and some people find that some of the older biologics like Infliximab (Remicade) and Adalimumab (Humira) are more effective than Cimzia.

In terms of working out how severe your Crohn's is, I recommend starting a Crohn's Disease Activity Index diary. It sounds as if you haven't been asked to do one yet, so here is what to do:

Each day, make a record of:
* the number of liquid, loose, or very soft bowel motions you've had.
* the intensity of your abdominal pain (rated 0 for no pain, 1 for mild pain, 2 for moderate and 3 for severe)
* how you feel overall (0 = completely well; 1 = slightly under par; 2 + 3 are progressively worse; 4 = terrible)
* whether you had to take opiates or Immodium for diarrhoea
* whether you have had a temperature over 37.8C

Your doctor should be able to complete the rest of the questions, and this can give him a good indication of how you're feeling.

You might also like to keep a pain diary. You can find these online, and once again this should give the doc a good indication that your current medications are NOT helping you enough.


I can appreciate the difficulties you're experiencing in communicating with your doctor. I find it helps to prepare an A4 sheet of paper before each appointment. On one side I list all my current medications, and I use a highlighter to mark any scripts that I need, so that the doc can see this at a glance and has no excuse for forgetting to give them to me! On the other side, I write a list of the things that are bothering me most at the moment - this might be abdo pain or nausea or joint pain or uncontrollable diarrhoea or whatever - and another list of the things I'd like advice on - e.g. how to control leakage from a fistula; how to better manage pain; things like that. I also find it helps to write down any life issues that might be exacerbating my symptoms (e.g. grief, extra stress from family problems, lack of support from friends / family, whatever).

I find that it is easier to write all these things down, because then he can see at a glance what is happening with me, without worrying about whether he's had time to discuss all my issues at the appointment. I feel that it is important to do this, so that we are both protected should anything go wrong, and so that my doc can chart my symptoms over time.

This is getting over-long , but I hope these ideas have helped. Welcome to the forums, and please do keep talking to us -- it's lovely to meet you.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/4/2009 6:31 AM (GMT -7)   
Hi Fawn,

And welcome to Healingwell. Sorry for the reason you have to be here though. I have lived with this disease for over 33 years and I will tell you when first diagnosed it is usually the hardest for us. As they are testing and trying to find the right meds for you. Have you taken any steroids yet? Usually these are very fast acting meds that help to get the flare under control faster. I will not lie, you can gain weight on them, but they really do help to quickly quiet things down. I would recommend even trying a liquid diet for awhile if you can as that can help to quiet things down too. As for weight gain you will find that it depends on the person, many lose weight, but others gain. No rhyme or reason on that one. Also, Crohns disease can be anywhere from the mouth to anus, so hearing you have problems higher up too is not a surprise. I think Ivy gave you a good idea about keeping a journal of how you feel each day will be helpful for the doctors to understand whats going on with you. Another thing is your diet. Many on this forum have found that raw foods and roughage are very hard on our systems. Many on this follow either a low residue diet or the SCD diet. You can go up above to our Crohns resources and get information about the different diets and information on different medications. I hope I have helped some. Don't hesitate to ask any questions you may have.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

vitaka
Veteran Member


Date Joined Jun 2006
Total Posts : 887
   Posted 9/4/2009 9:14 AM (GMT -7)   
I agree with Ivy regarding keeping a symptom diary and Nanners about the prednisone. Many of the drugs given to Crohnies can take 4-6 weeks (and sometimes even longer) before you have any idea if they are even helping a little, while prednisone, while having its own set of risks, can start providing relief in a much shorter period of time.

You mentioned that your doctor prescribed you Azathioprine but told you not to take it at that time. Are you taking it now?

The first year of your illness is often the hardest, as you are struggling to figure out what the heck is going on while dealing with all these horrible symptoms. Unfortunately, it can take a long time to figure out which regimen bests fits your particular case. That is why you are getting all these tests, so your doctor can assess where the disease is currently located along your entire digestive tract. That said, if you can't understand your GI half the time and don't feel comfortable speaking up with him, you may want to find a new doctor. Also, try to not be embarrassed talking about your symptoms. I know it's easier said than done, but you GI is a specialist in this area and needs to know exactly what's going on at any given moment in order to best help you.

Also, the sleeping med you referenced is most likely trazodone, which is a sleep med + mild anti-depressant. I have to take it every night or else I will not be able to fall asleep/will wake up all night.
29f, PhD student, diagnosed with Crohn's ileocolitis in 2/06.
During the summer of 2006, I completed the Adacolumn Apheresis clinical trial, which helped me enjoy 2+ years of remission and more than one year med-free. During spring and summer of 2009 the symptoms slowly but surely began to return, and now I'm flaring again.
Colonoscopy/endoscopy scheduled for 9/10; barium X-ray scheduled for 9/18
Currently taking: 4g Pentasa, 20mg prednisone, 150mg Trazadone, multivitamin, vitamin D supplement


memorytheatre
Regular Member


Date Joined Feb 2008
Total Posts : 25
   Posted 9/4/2009 3:22 PM (GMT -7)   
Good advice so far. With all that pain it seems like you would be motivated to do a food elimination test. (http://www.webmd.com/allergies/allergies-elimination-diet)
Common allergy-causing foods include milk, eggs, nuts, wheat, and soy. You also might want to check into the SCD diet. It has helped many people keep things in check a little better. This isn't a solution or cure, but if you do have any food allergies, eliminating will help immensely.
Father to 2 year old son diagnosed with acute Crohn's.
Imuran (40mg's a day), 6mg Prednisolone, GAPS diet, Mutaflor, Bio-Kult probiotic, Yes parent oil, about to start LDN
Always flares when we dip below 5mg Pred. Just got over C. Diff (we hope).


Fawn0209
New Member


Date Joined Sep 2009
Total Posts : 15
   Posted 9/4/2009 7:31 PM (GMT -7)   
Nanners and Vitak, yes, I think I mixed myself up somewhere, because I looked up ciprofloxacin and flagyl and both say they're for bacterial infections. I had thought that one or the other was the name of the tapered steroid I'd taken fresh out of the hospital in April. At any rate, I did indeed take a tapered steroid, which I'm pretty sure was prednisone, but only for the week or so that the pack lasted. And yes, following that, I began taking the Azathioprine (Imuran) for about a month, and was taken off and put on Cimzia.

The Activity Index Diary is an excellent idea, Ivy... I've no idea why I didn't think of it months ago, and more so, why my doctor himself never made the suggestion. Also, I hadn't any idea that food really might affect the disease. My doctor had told me that there was no definite explanation for why our symptoms flare-up. He did say at some point that I could keep an eye out to see if particular foods might be leading to more discomfort than others, but not necessarily that they would. And since I seem to be in pain no matter what I eat, I simply assumed that foods were not the cause, in my case. He'd also mentioned several other possible causes such as stress, or physical activity, so I really hadn't tried to investigate the food thing any further. It's helpful to know that there may actually be something to it.

And I appreciate the tips on links and resources. I'm always researching and trying to find more reliable sources of information, so things other patients have stumbled upon and found to be helpful will surely be helpful to me.

Thank you.

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 9/4/2009 10:57 PM (GMT -7)   
Welcome... I'm on Cimzia now and am noticing a benefit from it. I was also helped for 2 years on Remicade before it quit working. I've been on Cimzia now and I'd say I'm getting almost as much benefit as Remicade, not quite. But, in general, once the body figures out one of the TNF meds (Remicade, Humira and Cimzia), the others are not as effective.

I took Imuran/Azathioprene for 3 weeks and had to quit due to exteme fatigue, vomiting (to the point of dry heaves all night long). The medication takes 2-3 months to fully kick in and help. So, if you discontinued it just because it didn't seem to help, you might not have taken it long enough to fully understand how it was working. However, if it was because it made you feel bad, that's different.

The others are right - the beginning is the worst of it all. Hang in there...
--female dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone, Tysabri
--Prochymal in Phase III study (can't wait til it's approved!)
--Compounded budesonide 3mg/daily, Started Cimzia first dose 2/10/09.  Dx Osteoporosis 10/08 started Forteo 1/27/09


Davin
New Member


Date Joined Sep 2009
Total Posts : 1
   Posted 9/5/2009 9:34 PM (GMT -7)   
I'm fairly new to this as well. I was diagnosed in December 08. My symptoms have not been sever (at least on the pain level) as yours. I have had a few bouts of intense cramping, and have dealt with much rectal bleeding, internal burning sensations in the abdomen, being lightheaded, weight loss, and inability to focus at times. Someone above had mentioned the SCD diet, and I think it is well worth looking into. I have been a week on it, and it seems to slowly be helping. If your looking for a quick fix, this isn't it, since the diet can take at least two years as stated in the book "Breaking the Vicious Cycle". I found the book to be very eye opening, and I recommend getting your hands on a copy if you can.
I'm also taking a liquid vitamin-D complex supplement formulated for intestinal diseases and disorders from Apex Energetics, and it helps.
I wish the very best for you, and will be praying for you. Like I said, I'm new to this and have much to learn. I find myself scared and disheartened at times, and need all the encouragement I can get.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/6/2009 6:41 AM (GMT -7)   
Hey Davin,

Just wanted to welcome you. You might want to make a post of your own, so that you can get any questions you might have answered.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

AnthonyL1991
New Member


Date Joined Sep 2009
Total Posts : 7
   Posted 9/6/2009 7:39 PM (GMT -7)   
Thank god you got off of imuran that stuff is dangerous.... Nothing but bad things can come from it.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 9/6/2009 8:42 PM (GMT -7)   
Imuran has been a life-saver for many though, we all react differently to meds, some of us don't react at all, for me I'm either allergic or non-responsive to traditional oral RX, so I had to put my skeptisism aside and go the natural route, which thankfully has helped, not full remission but I'll take what I can get and I'm a heck of alot better off now on the naturals than I was on RX or when taking nothing at all.


:)
My bum is broken....there's a big crack down the middle of it! LOL :)


andrealeigh71
Regular Member


Date Joined Sep 2009
Total Posts : 96
   Posted 9/20/2009 7:59 AM (GMT -7)   
Don't ever be afraid to ask questions---you need to understand what is going on so you can be in control of your disease
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