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Aussie Needs some help with her crohn's

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Crohn's Disease
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Posted 1/2/2008 3:25 AM (GMT 0)
Hello Everyone, This is my first post.

Diagnosed with Crohn's disease following capsule endoscopy, (the pill cam) in July last year. I have multiple apthous ulcers in the jejunum and am suffering from loops of jejunum with thickening and distension.

My questions are

1. Are the apthoid ulcers the beginnings of crohn's?

2. Do these ulcers get bigger or deeper?

3. Is the incredible fatigue part of the illness?

4. I am taking tramadol for pain, but I do not have the runs as most other sufferers experience.

I am also having trouble with the most incredible itching over my body today I have had another blood test as I keep suffering from hepatitis (not drug related ) just very elevated liver enzymes.

I am so sorry for the questions, but my GI Doctor just gives very basic facts and I dont know anyone else who suffers from this disease.

From the time I was a teenager (I am now 48) I suffered terribly from diarrhea which the doctors put down to nerves, but this hasnt happened since I turned 40. I also had my gallbladder removed when I was 15, no stones but diseased.

The mornings are the worst, I feel bloody awful.

I am a female with two children.

Looking forward to hearing from you .

Posted 1/2/2008 3:35 AM (GMT 0)
extreme fatigue was one thing i always experienced. before i was diagnosed i could surf for hours. after i was diagnosed, being out for an hour was a long time for me. i could never build endurance. it sucked.

i dont know about the rest of your post.

one thing that has worked wonders for me is diet. most doctors dont discuss that. they just give you meds. check out the maker's diet and the specific carbohydrate diet. both work wonders for people with crohns. the only drawback is that you will have to radically change your eating habits. it is difficult at first, but like anything else, once you get used to it and adapt it is easy to do. plus you should see some benefits from it (no promises though) so you'll want to eat this way. probiotics is also something to look into as well. there are quite a few of us here that take them.

best of luck!
Posted 1/2/2008 3:52 AM (GMT 0)

Hi and welcome! This is a great place to get answers from lots of nice and informative people. I'll try to take a stab at some of your questions. The apthous ulcers are a part of Crohn's, and they can appear anywhere in the digestive tract including the mouth. The ones in your jejunum (small intenstine) are the result of Crohn's. Yes, they will get worse over time if you're not getting treatment- they get deeper and possibly more widespread, depending on how active your disease is. Are you on anti-inflammatories (i.e. sulfalazine, Pentasa, Asacol, etc)? Lessening the inflammation will help the ulcers heal.

Yes, unfortunately being very fatigued is part of the disease as well. Think of how tired you get when your body is fighting off a cold- it's the same thing, except your body is fighting off your digestive tract. Have you had your blood checked for anemia, iron deficiency, or vitamin B-12 deficiency? Those can make the fatigue worse.

The hepatitis and itching sounds miserable. I sure hope you are feeling better soon!

Posted 1/2/2008 4:18 AM (GMT 0)
Thanks for the responses, am due to start a drug that the Gastro specialist has recommended, Melsalismine (dont think that is how it is spelt!) Also had blood tests today checking for B12, B6 and CBC,LFT AND SO ON. I have been taking B12 orally but think I might need the injections as I dont think it is being absorbed properly because of where the crohns is.
Do other sufferers apart from the fatigue also get tingling in their hands and feet? All these wierd symptoms from this horrible disease!!
After reading some posts a lot of you have suffered greatly, but are a great community of people. I am so pleased I have found this site.
Posted 1/2/2008 7:28 AM (GMT 0)
Hi Sheila,

I don't really have anything to contribute beyond what the others have said, but I thought I should poke my head out of hibernation and say hello. I'm Australian too - our treatment regime can be quite different to that enjoyed by the Americans here, so if you want any Aus-specific advice, just sing out and I'll do my best to help.

Oh, and I think the drug you mean is Mesalazine :-).

Welcome,

I.

PS. The tingling can be a sign of other problems, so it might be a good idea to mention it to your gastro next time you see him.
Posted 1/2/2008 4:07 PM (GMT 0)

Hello Aussie Sheila

Welcome to Healing Well and the CD forum.  We are so glad you found us and I am sure you will meet many kind and caring members.  You have already received some great advice and sharing from members.

You mentioned Tramadol and itching.............I would check with your physician on that drug. You might be allergic to Tramadol.

Again welcome to HW and stay with us. 

Kitt

Posted 1/3/2008 12:43 AM (GMT 0)
Hi Sheila,  I just read your second post after I already sent my reply.  I have had tingling in my fingers and toes for almost two years off and on.  Do the very tips of 1 or 2 of your middle toes on each foot get swollen sometimes for no reason?  I haven't even told the doctor about that stuff yet.  Thanks for reminding me I will right that down tongue if you think of any others please mention them cause like I said, I'm just starting to figure this all out too.  Thanks!
Posted 1/3/2008 1:38 AM (GMT 0)
Hi Debbikay,
Thanks for your reply, its interesting to note that we are both about the same age and are now discovering the source of years long ailments. Like you, I began to question my sanity beccause of the strange symptoms, I think once you have the diagnosis of crohn's you are relieved to find out, but then a whole wave of emotions takes over. Disbelief, worry, denial I am going through the whole gamut, however, after reading your posts and many others, I take comfort in the fact that we are not alone.
Take Care and God Bless.
Posted 1/3/2008 2:11 AM (GMT 0)
Hello and welcome. Sorry to hear you have having such trouble! Have you ever taken the antibiotic flagyl? It is known that it can result in peripheral neuropathy (nerve damage). My feet still are a little numb but at least the super-sensitivity is gradually going away. What other meds are you taking?
Posted 1/3/2008 2:30 AM (GMT 0)
Hi,
Am taking tramadol for pain, endep to help with sleep, multi vitamins, B 12 due to start Mesalazine
Which I think in the usa is called pentasa. Over a year ago was taking norfloxacin for UTI thats when i developed an allergic reaction, the drug caused hepatitis and thats when the tingling in my feet and numb face started. It comes and goes. I seem to have adverse reactions to lots of drugs and am very wary to start new ones.
Posted 1/3/2008 2:32 AM (GMT 0)
Peripheral neuropathy? Is that what that is? I didn't know what that was, I thought it was somrthing to do with eyes. Wow! I keep learning new stuff. I have my next GI appointment in three weeks I will bring up this stuff. I only met the GI right befroe they wheeled me in to surgury for colonoscopy and I went home after that so there is still allot to discuss I think. I haven't seen a GP only nurse practitioner. The ER surgeon who took out my appendix sent me to the GI. IM low income so I don't have allot of choices. Thank God for this site so I can go equipt to know what to ask about. Thankyou.
Posted 1/3/2008 2:38 AM (GMT 0)
Hello again. I am sorry to hear about your problems with medications. Doesn't sound pleasant at all! We really are all different and have different reactions. From reading posts on this Forum, it seems that in the beginning people have trouble finding meds that work without giving them bad reactions. Once they find the right "cocktail" of drugs/diet/supplements, their lives improve. It might not last forever but then they find another cocktail that works. I sincerely hope you find yours soon!!
Posted 1/3/2008 2:38 AM (GMT 0)
Debbikay, in case you haven't noticed yet, the first rule for inferior doctors and nurses seems to be "if in doubt, blame the patient". Very convenient for them - saves them the trouble of thinking deeper about diagnosis and treatment.

:-/

Ivy.
Posted 1/3/2008 2:39 AM (GMT 0)
PS. Don't feel alone in not having D. Lots of people here have the opposite, and suffer from constipation.
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