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Crohn's Disease
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Posted 11/25/2011 6:42 PM (GMT 0)
Hello all. I am new to this group and joining in hopes to find some support. I am 33 years old and have NEVER had any other illness or digestive issues to my knowledge. This all came on so fast I originally thought it was caused by the water I drank on a trip I was on as my symptoms started 24 hours after I returned. My docs could find no evidence of illness, and I have tried cutting out soy, gluten, dairy, but still was not feeling well.

I recently had a colonoscopy after dealing with what I thought was food intolerances and weight loss for 5 months. I have been been through many medical tests, endoscopy (no celiacs), Upper abdominal CT, and only just recently a colonoscopy which did find mild inflammation and 2 small ulcers in my ilium. So, my gastroenterologist felt it is Chron's, and wanted me to take entocort asap. I did take it for 2 days and then I stopped to take an antibiotic first as one of my osteopathic doctors did find a type of bacteria in a comprehensive stool analysis (CDSA) psudomonas aeruginosa she felt needed to be treated with either herbs or the antibiotic ciproflaxin. So when I stopped the entocort (last dose was on a monday) I developed a rash/hives on Tuesday morning. Has anyone had this reaction to entocort? I am not sure if I am allergic to something in the entocort or if it is from stopping the entocort. My doctor says he does not think it was an allergic reaction because he has never heard of anyone having issues from it, but I am not so sure.....

So then I tried taking the Cipro, and I was only able to take it for 1 day without becoming so ill I had to stop it. So, I am wondering if there is a common culprit here maybe sulphites or something. I am wondering if anyone else has had trouble with drug sensitivities and what they found that worked for them.

I am a mother of a 1 year old and I am increasingly becoming worried that they are not going to find something to help me due to my sensitivities to all of these things and with my weight continuing to drop. I would love to hear any advise or suggestions anyone might have for me!

Thank you!!

Jen
Posted 11/25/2011 7:27 PM (GMT 0)
Hi Jen, glad you found the forum. There are lots of folks here who have been in your shoes! In fact, my IBD diagnosis came after the birth of my first child - I think the pregnancy triggered the illness, although before the bloody stool I had a pretty long history of gut complaints.

Does your osteopath know what your GI is prescribing and vice versa? Why did you feel it was necessary to stop the entocort in order to take the cipro? And did your GI agree with the antibiotic prescription to treat a bacteria found in your stool? The wikipedia site for this bacteria identifies it as one commonly found in medical equipment and non-sterile swabs, so it may be that the culture result of your stool is typical. Also the wiki site says that unless this bacteria is cultured from a sterile source (blood, bone, organs) then it is typically not treated.

Entocort is a reasonable medication for people with inflammation in the terminal ileum. It shouldn't give you systemic side effects. A faster solution to your feeling poorly would be oral steroids such as prednisone, which are very effective in the short term but can cause unpleasant side effects and are not to be used longer than a few months. Beyond the immediate issue is the question of your maintanence strategy, and that is something you should discuss with your GI. Some of us have used relatively safe meds based on 5-ASA (Pentasa, Asacol and others). Some GIs will prefer a more aggressive approach and go straight to biologic meds. For serious disease this is probably the best approach, but its still very individual.

If you are breastfeeding your daughter, most of the meds we Crohn's patients take are considered safe, but you should probably search Dr. Hale's medication in mother's milk website to read about the different studies on these meds.
Posted 11/25/2011 7:52 PM (GMT 0)
Hi! Yes, my GI is aware of the recommendation from my osteopath but he said the same thing that you did. He said he did not see any reason to try it but if I wanted to I could do 7 days of cipro but he wanted me back on Entocort immediately following that. My osteopath said that my levels were above an average range and with the certain stran of pseudomonas that it is, she felt I did have a bacterial infection. Western medical docs really do not believe the same thing. I guess maybe I was just hopeful that it was just all caused by a bacteria and that the antibiotic would take care of the cause. I wanted to believe that I was right and it was caused by contaminated water as I suspected, but than again it all happened about 2 months after I stopped nursing my daughter so it could very well have be reasonable that something with my hormones also activated the Chron's. I actually asked if I could stop and trial the cipro because I knew I had past of being sensitive to meds, so I wanted to make sure I knew what I was reacting to. I think you can take both together is that correct?

I will look into your other recommendations. I am no longer breastfeeding, but I was hopeful to have another little bundle someday- so hopefully I can reference that site in the future!!

Thanks again, Jen
Posted 11/25/2011 11:31 PM (GMT 0)
Hello and welcome, though I am sorry that you have to be here. Like Kazbern, I too was diagnosed after the birth of my first child, she is 24 now. I also have a 21 year old, so you most certainly can have another bundle of joy. My mother also had CD and she was diagnosed when I was 1, I was her only biological child, so the hormones can definitely play a huge roll in CD.

Cipro is one of the most common antibiotics used in the treatment of Crohn's so it might have helped those symptoms had you been able to take it. Is there another antibiotic that would work on that bacteria? I agree with Kazbern that prednisone would probably get you feeling better pretty quickly but you don't want to be on it long term, so it is important to find a long term maintenance drug, a 5-ASA, Imuno-Suppressant, or Biologic. The key is to find something that works for you and keep with it. You want to get the disease into remission and keep the inflammation down so that future damage is kept to a minimum. I had shown signs of disease in my early teens but was not treated, the disease was left to run amok and it took 10 years to get things under control after diagnosis because so much damage had been done.
Posted 11/26/2011 5:55 AM (GMT 0)

Hello & welcome to the forum! I am new here as well & everyone has been so nice and wise!! This forum is a blessing!

   I'm sorry you are dealing with all this crud. I'm taking antibiotics now(flagyl & amoxicillin). I took cipro in the hospital as well a few weeks ago and they can deffinately make you feel ill but I'm sucking it up because tomorrow is my last day on them yeah I haven't taken entocort so I can't offer advice on that but like Kazbern said probiotics can be worth mentioning to your GI. If yogurt doesn't bother you I would buy some with active cultures and those can help balance out and rid bad bacteria.

  I know the weight loss situation very well. If you are looking to maintain/gain weight I have found Ensure helps me a lot along with vitamin waters and green tea. I can't tolerate the milky Ensures and during a hospital stay in July I ordered Ensure Enlive! juice boxes. They are 200 calories, 0 fat, full of vitamins and are lactose free. They come in apple & mixed berry flavor. They aren't tastey like Kool-Aid but they are small and filling. Snacking through out the day(if you can handle it) on things like teddy grahams, goldfish and peanut butter crackers help my sugar stay up as well as my weight. :-)   I've lost about 85ishh pounds since February but that's Crohn's for ya!

  Prednisone & I have a love hate relationship. I do very well on high doses but when I taper I crash & burn every time but that doesn't happen to everyone! Since your case is mild I'm sure Prednisone will help you out with inflammation control and it will probably spike your appetite as well.

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