update from abroad

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brit tuck
Regular Member


Date Joined Jun 2007
Total Posts : 143
   Posted 6/8/2008 12:52 PM (GMT -7)   
Hi everyone. So I'm getting quite settled in now in London. Actually almost done with my first program here for the summer. I met with my GI doctor here last week, and he seems very nice. I did forget to mention something though that has been kind of concerning me. So of course, I thought I would tell you all about it. :)

A few days before I left I had my third colonoscopy. The results were relatively normal, with it showing less inflammation than before. So that was good. And all my biopsies came back normal as well. But after that I was having some bloody D. Never really had that before. It happened the day I left on my flight as well. So I stocked myself up with immodium and got through the flight pretty well. Since I've been here though, I really either am having really loose stools (like almost bowl prep type stuff) or am constipated. I rarely get constipated. So I'm having very minimal amounts of "normal" stools. Since being on the Entocort, I had what I called my "happy medium" where I could get through most days with normal stools with some episodes of D sprinkled in. To me, this was workable. But now it seems like I'm not having really any days with my "happy medium."

Also, a few days after arriving I went on some bumper cars with my friend. I ended up really banging my knee and got a gigantic bruise. I was expecting it though. But then I started notices other large and very discolored bruises all over both of my legs. I'm super pale, so getting some bruises (small ones) isn't that unusual. But I've never really had huge ones like these. And I don't remember doing things to get them. And now I'm getting smaller purplish bruises on my arms as well. At my last GI appointment back home, the nurse made a comment that I was no longer anemic. I never remember being told I was anemic, just that I had a B-12 deficiency. I've been getting monthly B-12 injection for over a year. I'm actually going to get one here on Thursday with my London GI doctor.

Basically, I don't want to freak out and give a long list of things to my London GI doctor if I don't have to. I'd like to just "maintain" what I've been doing to get through my trip. I don't want to really mess around with my meds. I'm on 9mg of Entocort (soon to go down to 6mg), along with Imipramine and Bentyl (and then birth control for my endometriosis and Tetracycline for acne). I'm staying on the Entocort until I get back to AZ, and then I'm supposed to try the Biologics because the 6 MP made me too nauseous with severe abdominal pain.

Should I be concerned about the bruising and the seemingly different bowel patterns? Or should I just chalk it up to being in a different country and perhaps being a bit nervous about things? Thanks for reading this long post!

Shoshanna
Regular Member


Date Joined Feb 2008
Total Posts : 91
   Posted 6/8/2008 3:33 PM (GMT -7)   
It could be all of the above...I am sorry I an not the one to ask. If it was me and I had insurance then I would be going to the doctors office or the ER and having it checked out.

Good luck
CD diagnosed 34 years ago
Stem Cell Transplant may be back on
Lap-assisted Ileocolic Resection- February 2008
Ankylosing Spondylitis
Uveitis
Back on Prednisone - I hate it
Methotrexate
Ranitidine HCL 
Prednisone 1% (eye drops)
Maxidex  (eye ointment)
Homatropine 5% (eye drops)
B12, Folic Acid, Vitaman D, Calcium


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 6/8/2008 5:57 PM (GMT -7)   
You should have blood work done, preferably before you see the GI to make sure your blood chemistry is normal. In particular, you should have your platelet count checked. How long have you been on tetracycline? A rare adverse reaction to the drug is thrombocytopenia, which is low platelets. Platelets help blood clot and when platelets are low, you will bruise very easily. Another sign of thrombocytopenia is a fine reddish rash, particularly on the legs. The rash is caused by microscopic bleeding from capilliaries. If you notice anything like this, if the area around a bruise swells or if your bruising worsens, or if you notice anything unusual with your gums (maybe they bleed when you floss etc) go to the ER immediately, tell them you are on tetracycline and ask to have blood work done to ensure that your platelet count is not low. Also, tetracycline can cause diarrhea.
Belleenstein:

30+ years living with Crohn's.


brit tuck
Regular Member


Date Joined Jun 2007
Total Posts : 143
   Posted 6/8/2008 10:49 PM (GMT -7)   
I emailed my doctor's office at home, and I'll let my London GI doctor know. I don't really have insurance here (just a weird travel kind), so I don't really want to do something major.

I've been on Tetracycline for at least 2 years. I don't have any rash that I've noticed. But I'll definitely keep my eyes open for that. That's kind of scary. I did notice a couple months ago, when I was on the 6 MP, that my gums bled really easily and wouldn't stop like it normally did. But it seemed like it stopped after I quit taking the 6 MP.

Would the low platelet thing show up on normal blood work? Or is it something they need to specifically look for? I had blood work done before I left home, and the only thing they really mentioned was that my C-Reactive protein was up and the thing I mentioned before about me no longer being anemic (which was weird). Thanks for your responses!!! I had no idea tetracycline could cause diarrhea. Just another med I'm on that probably makes my Crohn's more interesting.

belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 6/9/2008 8:57 AM (GMT -7)   
Yes platelet count is one of the basics in a CBC.

Look, there is probably nothing going on Brit. But it is such a simple test and 6-MP is another one of the drugs that definitely can cause problems with blood chemistry. Your platelet count should be between 200,000-450,000 it can go as low as 40,000 - 50,000 without seeing any physical signs. Once it gets down to under 20,000 you start seeing bruising, bleeding from gums and rash. Under 10,000 and you are at risk of stroke etc and also of internal hemmorhage if you are hit or fall etc.

Becuase it can be a life-threatening condition and is usually easily reversible you might want to consider making the investment in a regular CBC blood screen if you develop any of the other symptoms or if you continue to get unexplained bruising.
Belleenstein:

30+ years living with Crohn's.


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4392
   Posted 6/9/2008 10:30 AM (GMT -7)   
Easy bruising is a known side-effect of Entocort. Constipation may or may not also be related to the Entocort (it constipated me...). Also, if you've done anything different with your diet, then that could be contributing to your constipation. And we all know stress can play a role in gut function.

I agree with the others, though, that a routine cbc may shed some light on what's going on and at the same time shouldn't be too unaffordable...

Good luck,
-Razzle
Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD (Lupus?), Osteoporosis, Anemia, T- & B-Cell Lymphopenia, malabsorption/malnutrition, Lyme Disease (Igenex Lab IgM WesternBlot positive/CDC negative), etc.
Meds:  Pulmicort, Injectable Vitamin B12, Herbs, Nutritional Supplements, Homeopathy.


brit tuck
Regular Member


Date Joined Jun 2007
Total Posts : 143
   Posted 6/10/2008 10:47 AM (GMT -7)   
Belleenstein, I guess what I was somewhat confused about was whether the blood work I had done a month ago would have shown my low levels (if I have any). That's partly what I emailed my doctor's office about back home, figuring if there was any indication in that blood work about something that they would let me know. But regardless I will definitely tell my London GI doctor when I go see him on Thursday.

I'm just not sure how much anything costs here without being covered through the NHS. It could be something crazy like back home, where they charge ridiculous fees if you aren't covered by any insurance. But it is more important to make sure nothing like that is going on. So I will definitely be talking to my doctor about it.

I really haven't changed anything about my diet, so that was why I was kind of caught off guard by this constipation. Hopefully things get regulated out. I figure I should give it some time with that at least and see what's going on. I've been on Entocort so long that I figured I would have experienced any side effects caused by the medicine by now, but who knows.

Thanks for responding though. It's good to know that it's probably nothing, but I will definitely see about getting a blood test just to make sure. Always best to play it safe.

brit tuck
Regular Member


Date Joined Jun 2007
Total Posts : 143
   Posted 6/10/2008 3:07 PM (GMT -7)   
So I was some what stupid tonight and went to have Indian food with my friends. I got a really bland spinach dish with some naan, and figured I would be fine. But I couldn't even make it home afterwards without an episode of D. My friend was with me and we were about to take the tube home when I was like "nope, no way will I make it." Found a super nice lady who worked at the tube station and she told us that there was a hotel right behind the tube station. Barely made it there in time. I wanted to hug the lady for understanding and giving us advice on where to go - she let us out without swiping our tube passes as well. I think she could see the look on my face.

So that stirred me into action and I've called and left a message for my doctor back home. I am going to wait it out and see my doctor here Thursday morning. I just need to get all of this somewhat under control before I leave on my week long trip on Sunday morning. I'm getting super frustrated again. Why can't there be a simple cure?

belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 6/10/2008 8:12 PM (GMT -7)   
I understand your frustration. I don't know sometimes which is worse, the constipation or the diarrhea. And it is doubly difficult when you are away from home. Just go lightly on the food front if you are planning a trip and, if you are not developing new, unexplained bruising I wouldn't worry too much about your platelets.

I am always hyper-alert when someone mentions unexplained or unusual bruising because my daughter suffers from ideopathic thrombocytopenia so I know that this life-threatening condition can develop very quickly. Her condition is the acute relapse and remit kind. Her platelet count is fine in between episodes, but when something triggers her body to start destroying them, her platelets can fall to dangerous levels very quickly. Her last episode was in 2004 and by the time she noticed the beginning of the rash and got into hospital her platelet count was under 3,000. At that level, she is in danger of spontaneous hemorrhage -- stroke, anneurism (sp) etc.

We know what to look for now, but I remember taking her to the dentist when she was 16 because all of a sudden her gums were puffy and bleeding easily. He thought she had an infection, put her on antibiotics (the worst thing he could have done) and within 24 hours of starting the medication she was developing large purple welts (purpura) all over her neck. Her counts were under 10,000 by the time she got into the ER. The first time she was only six and that started with an unusual number of bruises, which we noticed after she spent the weekend swimming in a hotel pool. It took a fall from a playground swing set for us to realize that we were not just dealing with the normal bruises that come from getting banged up on a tiled pool edge. She arrived home with hematomas spreading right around her hip and on her knees. In addition to those she'd already developed, the new bruises made Laura look like the victim of a vicious beating. It is a very scary condition, but in Laura's case easily treatable with transfusions and steroids.

Just something to be aware of especially, those of us on meds that can affect blood production.
Belleenstein:

30+ years living with Crohn's.

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