Newbie here ... Crohn's sucks!!

[solid_sal]

Hey guys,

Newbie here ... I've been reading alot of these posts for a while and I'm glad a forum like this exists for this terrible disease. Crohn's can be a life changer. Anyways, here's my story. I'm active duty Air Force and I started experiencing mild symptoms while I was deployed in Afghanistan back in January. Back then I was having mild abdominal pain, small bouts of D, and mucus in stool. Luckily none of this really affected my daily activities. My appetite was still normal. However, the symptoms didn't go away. I eventually decided to go see the doc at the on base clinic. Needless to say the military docs did almost nothing to me. They attributed my symptoms to the anti-malaria drugs I was taking (doxycycline). The doc's only recommendation was to take the doxy with food so it wouldn't irritate my stomach. I followed the recommendation but still the symptoms wouldn't go away. It got to the point where I was visiting the doc every week. They finally did an x-ray and found that I was backed up. So they gave me Miralax. So I drank the Miralax and still experienced the same symptoms. So I played this back and forth game with the docs for about 3 months. Then in April I got really sick. I remember eating dinner and out of the blue I got extremely nauseated. I walked back to my room dry-heaving the entire way. Eventually it went away but came back in full force a couple of days later. The nausea was so bad I was unable to eat for about 4 or 5 days. Even the thought of food made me sick. Eventually I sort of recovered. I was able to eat some but my appetite has not been the same. And the nausea still hit me randomly. And of course I still had all of my original symptoms. The military docs again were no help. I had one tell me to just wait it out until I got home and another tell me that it was just the environment in Afghanistan that didn't agree with me. Well, it was tough, but I eventually made it home in April. Being sick and flying from Afghanistan back to the US was not fun at all. By the time I got back I was so eager for treatment and relief. I found a GI and after a stool sample, an endoscopy, a colonoscopy, a hydrogen breath test, a Prometheus blood test, and a pill cam, I was finally told that I had symptoms consistent with Crohn's in June (funny that I was not told "You have Crohn's). I took a look at my pill cam results and they found ulcers, lymphoid hyperplasia, and random redness in my ileum. Since my diagnosis I have been on Entocort, Pentasa, and just recently Remicade (just had my first infusion last week). Its been quite an eventful and depressing journey. In the course of this sickness I've lost almost 60 pounds. I went from being athletic and fit to skinny and malnourished. Almost all of my clothes don't fit anymore. I do, however, have some questions hopefully some of you can answer:

- In the past 2 weeks I've had some weird/worrying extra-intestinal symptoms. These include skin tingling (like cold needles touching my skin in random places), sinus/pressure pain, throat spasms/stinging/pain, ear pain, burning eyes, headaches, light-headedness, feeling fuzzy (its a weird feeling -- like I have peach fuzz on my skin), geographic tongue, among others. Is all this normal? Could some of these be from malabsorption of vitamins?

- How reliable is the Prometheus test? At this point it just feels like I have something worse than Crohn's that can cause Crohn's like symptoms ... it seems like I have more extra-intestinal symptoms than normal symptoms ... Im just pessimistic I guess

- I've been on Entocort and Pentasa for almost 2 weeks and I've got one Remicade infusion under my belt. Im not sure if I am getting better and if I am, the effect is extremely minor. I still feel awful, everyday. How soon should I start seeing results? I'm just so ready for relief and feeling normal again.

- One more question .. not related to my symptoms. This is the first time I have a medical condition such as this. I was under the impression that I would be seeing a doctor. However, most of the consultations with the GI's office have been with the PA. The only times I saw the actual doctor were when he performed the endoscopy/colonoscopy and when he recommended the Remicade after I went in to his office complaining of abdominal pain. Is this normal? I would feel better if I had been talking to the doc the entire time.

 

[David]

Hi Sal and welcome to the community I'm glad you joined! I'm sorry to hear of your experiences though To answer your questions:

1. I wouldn't be surprised if some of your symptoms are due to medicine side effects. Have you discussed this with your doctors? If they haven't tested you for vitamin and mineral deficiencies, I would definitely request this as well. It can often be hard to get them to test you but here are some of what I like in order of preference: vitamin B12, vitamin D, folate, magnesium, potassium, iron, zinc, B6, K, B3, B1.

2. Which specific prometheus test did you have?

3. You should start feeling better anytime now

4. Ask to see the doctor if you're not comfortable just seeing the PA. If they aren't ok with that, get a new doctor. Many PAs are great, but this is your care and you need to be comfortable with it.

Question for you: what did they find with the colonoscopy? What did the biopsies say? Or is disease only present in your small intestine? And did they test you for infections like intestinal tuberculosis and yersinia?

 

[Angrybird]

Just wanted to say 'hi' and welcome to the forum, I think David has got things covered so I will leave it at that for now.

Will be keeping fingers crossed that you can be feeling better soon.

AB
xx

 

[solid_sal]

Hey David and Angrybird ... thanks for the welcome.

David to answer your questions:
- I've got a followup appointment tomorrow. I will definitely ask them to test me for vitamin/mineral deficiencies

- I had the Prometheus IBD sgi Diagnostic test. From what I have hear the chance of producing a false positive on this test is about 10%. Am I right? My results were: pattern consistent with IBD and the box marked Crohn's diseases is X'd out

- My colonoscopy didn't show anything. Everything checked out normal. However, I did find out that they didn't go all the way to the ileum. For me that would have been like a difference of a month's worth of treatment. So it looks like the disease is only in my small intestine ... don't know if that is a good or bad thing. Also, I was not tested for any of the infections you mentioned.

 

[LivinglifewithCrohn's]

Hi,

Have you had your iron levels checked? Many with Crohn's are Anemic due to malabsorption of the iron in the intestines. My iron is now under control due to taking ion suppliments but when I was at a low I was very light headed, at times dizzy, and I was not able to exert much energy without feeling like my heart was going to explode from my chest. I also had ringing in my ear. All these symptoms disappeared after my iron level increased to normal range.

Wanted to also mention that I wound up in the ED with a blockage and was admitted. Miralax in my opinion is not a fix for a blockage. You mentioned being backed up and that may have actually been a blockage which is a very serious and painful state, condition. For me this involvefd nausea, vomiting, and abdominal pain I can only compare to childbirth pain. For me the blockage was confirmed by a CT scan. It eventually resolved itself while I was in the hospital but after 20 plus years of Crohn's it was determined from the testing that I needed 14 inches removed otherwise I would continue to have blockages.

 

[Lucinda]

Did the pill cam show your illeum? I have never had a pill cam so I don't know how they work. That sounds like the only thing that could have seen that area. So if it doesn't work that far down, I would ask about other tests like CT scan or small bowel study.

I it reasonable at this point to insist on seeing a doctor over a PA and a GI over a general physician. Just my opinion.

I have heard mixed opinions from doctors about the Prometheus test. It is new technology ( read expensive) but not necessarily proven just yet.

Other symptoms could be your meds. Could be additional food intolerances or vitamin deficiencies. Definitely talk to your doctor. Hope you start feeling better soon. Most of the meds take a while to really kick in. I found Remicade made me feel worse before I felt better. Remember it is powerful chemicals entering your body. Sadly side effects are inevitable but still talk to your doc. You should be able to get some relief. Good luck.