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Crohn's Disease
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Posted 9/21/2007 9:14 PM (GMT 0)
Hello, I am diagnosed with RA and taking Methotrexate, Arava, Rituxan infusion, and occassionally Pred (I avoid this at all costs), in conjunction with Ibuprofen and Tylenol.  My rheumy suspects I may have inflammatory bowel based on symptoms and the unexpected relief I had while on steroids.  Essentially since my son was born my BM's have never been normal.  Either had diarrhea or pencil thin stool and always felt full.  This last bout was the worst I had with color changes, mucous, and possibly blood.  He set up an appointment with the GI specialist mostly based on my comment and excitement of how I could poo like a normal person on steroids.  Actually I find this strange talking about this on a forum.  Took me years to talk about it in person.  My son is 5. 

So, my appt is Oct. 16th and I am a bit concerned about what the first visit is going to entail.  Is it possible he will see me and NOT recommend a colonoscopy?  I don't want one.  If they do do one are you just there wide awake?  Or do they give you something to relax?  I am afraid it might hurt.  I have a fistula or abscess that I have had for a couple years.  I was supposed to see a surgeon about it but because of my shyness maybe??? I avoided going and this thing still continues.  I guess I just hoped it would go away.  Okay, I am the type of woman that has avoided PAPs aswell. 

Over the last few weeks I have actually dropped 14 lbs which is okay since I am not a small person but it is because of the diarrhea (pretty much constant) and lack of appetite now.  The rheumy said they may be able to treat with sulfasalazine and pull the methotrexate which will treat both symptoms.... what do you think?  I also remember I had some improvements while on Enbrel but I believe I was still on steroids then.

Can you all tell me some about this?  Long term effects?  Foods to avoid?  Are eggs bad?  Seem to have issues with eggs?  Could this still be an allergy to food and not a inflammatory condition?

Okay, that is enough detail I think...

Theresa

Posted 9/21/2007 11:57 PM (GMT 0)
Welcome to the CD forums. I have had CD for 20 years. As for colonoscopies they do knock you out most people wake up unaware that the test even occured except for the gas you have in you. They have to pump air in the intestines to get a better look. They typically take biopsies as well when in there. one time I had one done and even with the meds I still had parts where I awoke, but they just give you more meds. They typically give fentanyl, demerol, and/or versed depending on the doctor. I currently have a fistula that came through where my recent surgery scar is, my surgery was 3 months ago, I have had 3 surgeries this year for CD but the past 20 yrs with it was kept at bay with just meds.

The GI will most likely have you get bloodwork done including a Promethius test. The promethius test can show if you are posative for CD however it can show false posatives or false negatives. Some people have their symptoms exacerbated by certain foods. If you avoid eggs do your symptoms go away 100% or do they just lessen? These will be things your GI may ask and if not you should inform him or her. Try to stay away from too much roughage while you are having your symptoms this may help the symptoms to at least stay as they are or settle with hopefully not allowing them to get worse.

I am sure others will be along to give you some support as well
Posted 9/22/2007 12:20 AM (GMT 0)
Hi Theresa Glad you have joined us and welcome. I had the scope and don't remember anything I was completely out. Tell your GI that you wish to be asleep. You need to tell him about your abcess or fistula problem. There are meds that can help with that although I needed surgery for my grapefruit sized abcess. So don't let things get any worse being afraid sometimes stops us from getting things done but sooner or later we need help and sooner is better. Keep in touch and let us know how things go in the mean time ask away if you have any worries or concerns we are here for each other .Don't worry too much and it is better to know what is going on. lol gail
Posted 9/22/2007 5:09 AM (GMT 0)
Theresa,
I have seen your posts on the Arthritis forum, Welcome to the Crohn's Forum! First, please don't take this the wrong way, but you are just going to have to give up your reluctance to talk about poo, your fistula/abscess issue, and the other uncomfortable issues. The end goal is to be able to enjoy life with your son without worrying about BMs, bathroom availability, etc.

The GI will most defintiely want to do a colonoscopy if you describe to him what you have told us. Most give a combo of meds that make a person unaware of what has happened. I never recall the procedure or any pain that might happen when I have it. Whether this is food allergies as opposed to inflammatory bowel disease is not possible to determine until you have a colonoscopy.

In terms of diet, when a person has either Crohn's or ulcerative colitis, a lot depends where the disease is located in the intestinal tract. Also, what bothers one person might not bother another. The best you can do is start a food diary. Record what you eat and what happens after you eat it. It's likely a pattern will emerge telling you what foods cause you the most problems. about a third of people with Crohn's have it in a specific portion of the intestines called the terminal ileum [TI]. Active disease in that area can really be impacted by fibrous foods. Raw fruits and veggies can often cause pain and diarrhea when a person has inflammation in the TI.

Personally, eggs has always been one of the food I can tolerate. For one stretch of time it was about the only way I got protein. However, some others with disease in a similar area to mine might experience the opposite reaction.

I hope this helps. Should you have nore questions we would be most happy to help. Most of us are quite comfortable talking about these "icky" symptoms. LOL
Posted 9/22/2007 3:11 PM (GMT 0)
Ibuprofen is a real no-no with Inflammatory Bowel Disease, or any ailment which causes inflammation of the GI tract and in fact may actually cause inflammation. This will have to be addressed sooner rather than later, and may help you tremendously. I know that it helps with joint pain, but there are alternative meds out there that can be taken instead. Frankly, since your Rheumy knew of your symptoms, he should have been aware of this and changed your meds a long time ago.

Good luck with your referral to the GI, make sure you talk about the NSAID's you 've been taking.
Posted 9/22/2007 3:36 PM (GMT 0)
**First Welcome to this Forum.............

I totally agree with you having to get past the shame or whatever you are feeling about talking about" POOP"

Thats one of the subjects that is talked about on this forum and no one is ever judged or laughed at ( unless a joke is made by poster) or we have an O/T thread on 'Poop" going.......we DO HAVE TO MAKE OURSELVES LAUGH TOO as this DD will get to you if you dont have some semblance of fun or laughter occasionally IMHO

I did not remember my scopes ( both ends) except for last one and that was barely as I wanted to see what my guts did look like ..........MY decision about that once

I like Ides believe with what you have posted a good GI would definitely want a scope done ......
and you would be put out for sure I would agree as well

And as Judy has pointed out the NSAIDS are not good at all for this DD and cause inflammation or very well can ......and yes there are many other meds for the joint pain...........

I wish you all the best as well and do hope you will post and let us know what is going on and how you made out about the GI and NSAIDS

Be well

Stay with us ......

LYN
Posted 9/22/2007 7:48 PM (GMT 0)
Thank you all for your responses. I understand about the ibuprofen but when discussing alternatives and trying alternative NSAIDS they all caused issues the ibuprofen less so then all of the other ones. And if then there were those that never even touched the joints but still affected the gut.

I asked about other types of pain meds and all he said was we will have to wait and see if the immune suppressants kick in. He won't prescribe pain medication. Actually neither of my docs will. Funny thing is I have never taken any and wouldn't mind feeling pain free some time in my life.

Okay, I will work on getting over the poo shyness. You all sound like a great group of people. I will let you know how things go.

Theresa
Posted 9/22/2007 8:06 PM (GMT 0)
When the doctors first suspected that I had CD, my GI told me that she wouldn't treat me until I had a colonoscopy to make sure it was Crohn's. I was definitely scared with my colonoscopy. My doctor even gave me sleeping pills so I wouldn't be up all night worrying :) I don't remember a thing. Really, the prep is the worst part. Sleeping all day is very easy :)
Posted 9/22/2007 10:19 PM (GMT 0)

Some CD and UC symptoms can be brought on by a fungal condition...overgrowth of fungus/yeast... maybe triggered by antibiotics (even decades ago), birth control pills, moldy env't, etc. The only way to know is to experiment a little. Eliminate grains, yeast, sugar (an antifungal diet) for a week or 2, and see if you feel better. These foods feed the fungus and make the overgrowth problem worse. I didn't realize my 8 years of UC suffering were a result of a fungal condition, until I went on an antifungal diet (even when my doctors told me there was no link) and within 2 weeks, my symptoms virtually disappeared. I too had D, mucous, gas, pain, blood. I still try to stay on a somewhat modified diet. I "try" to stay away from yeast and too much sugar and grains to stay well, but still enjoy a brownie or two when I want :) BTW, RA has also been known to have a fungal etiology. As for the scope...love it. The prep is awful!!!, but the actual drugs they give you to knock you out are sweet :) That's just my opinion, of course. I'd have the scope, if I were you, just to find out for sure what's going on in your colon. Can't be too careful.

You may want to consider the elimination diet, just to rule out fungus. It is a real issue that is overlooked by most doctors. You may be pleasantly surprised, like I was. If you want more info, you can email me directly. Nothing special about it, just eating meats/poultry/fish, as well as veggies and limited fruits...as much as you want. Real food. Take care.

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