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Crohn's Disease
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Posted 8/26/2010 1:47 AM (GMT 0)
Hi All,
I'm a little shy about posting, but glad I found this board nonetheless. Everyone seems so supportive! Thanks for having me.
I was diagnosed with Crohn's 3 years ago, after having symptoms for the past 6 years. I'm lucky in that it's considered a mild case, hopefully contained to my ileum, for which I take 4g of Pentasa daily, as well as 20mg of Prozac, and a mess of multivitamins. My main symptoms during flare up are the incapacitating fatigue, the joint pain, the lower right quad pain, bleeding, mucous, and terrible bowel urgency. I also have terrible GERD symptoms. Now, the reason I say 'hopefully contained to my ileum' is that I was prescribed 40 mg of Pentaloc daily for those reflux issues. It helped, but things have gotten so bad in terms of the burning and radiating pain, that I've been told to double my dose to 80mg, and add 300mg of Zantac to the mix as well. This has been going on for 3 months. If I so much as miss one dose of Zantac, I'm in the fetal position. Blarg!
My GI has been very concerned about all the pills I have to take just to feel normal. Her goal is to figure out if my Crohn's has another site, and reassess my meds. Maybe moving me up to Imuran, etc. She also feels I may have Sjogrens syndrome. I have also been recently diagnosed with hypothyroid that was triggered post-partum. I'm going to a consultation with a rheumatologist as well, to rule out RA, etc. In short, I am a mess.
In the mean time..
I've been tested for H Pylori and come up negative, and just had both my colonoscopy and gastroscopy in the past 2 weeks. The colonoscopy revealed that my ileum hasn't scarred (yay!) but the Crohn's is still there. I'm ok with that. The gastroscopy I just had today and I am waiting for results.
I am so stressed out about this mess of symptoms, and for the first time in a long time really feel like it's eating into my quality of life. My 8 month old daughter is my pride and joy and I couldn't pick her up for the past 3 days because of this crazy pain.
A few questions for the more experienced on the board - any word of advice would be extremely appreciated..
First, after today's procedure, I was told that things looked 'ok' but that 3 biopsies were taken. Do they take biopsies of normal tissue? Or of suspect tissue?
Does anyone have Crohn's ulcerations in their upper GI area? If so, does the pain and burning I am talking about sound familiar?
Does anyone have any diet suggestions for upper GI symptoms? I have cut out all alcohol, caffeine, dairy.. but nothing seems to help.
Also, I am being booked for a barium small-bowel xray, or enteroclysis. Has anyone had this experience? I am petrified by the prospect of them putting a fluoroscope up my nose all the way down into my small-bowel. Yuck! Can someone tell me if a sedative is administered as in the gastroscopy?
Sorry for the flurry of questions, and once again I am very thankful for any insights or advice anyone can give.
I hope everyone is feeling healthy and doing great.
All the best,
gingerjem
Posted 8/26/2010 2:27 PM (GMT 0)
Gingerjem, I totally get the reflux pain. I had a stricture in my esophagus a few years ago that had to be opened with a balloon - after that I was taking Nexium daily, but it really did nothing for my discomfort. I've been unable to even eat chocolate without pain, which is a very bad state of affairs in my opinion!

I eventually quit taking the Nexium because I resented paying $75/month for pain. That made things much, much worse! Since my daughter also has reflux and was taking Prevacid, I started using that ppi and I felt a whole lot better. So now I take Prevacid, it costs less and I have significantly less pain. Meanwhile, my daughter hates Prevacid and is now taking Prilosec, which she says works better for her.

I've seen it posted here that people seem to develop resistance to ppi meds and have to switch every now and then. That would certainly explain what happened to me. I am not familiar with the list of meds you're taking for the upper gi pain, but perhaps it's time to try a different one (I think a ppi would be a good idea, if none of those on your list are doing that job). PPIs suppress acid production in the stomach.

My GI has never told me that my gastritis or esophagitis is related to my Crohn's, but I choose to believe that it is. I am negative for H. Pylori also, and even though I had a stricture in the esophagus there was no redness there from continual reflux. On my last endoscope my esophagus was clean but my stomach lining was inflamed.

I have never swallowed a pill cam but I have concluded that I must have inflammation in the small bowel, since my symptoms were treated effectively with Pentasa and not Asacol. Notice all the conjectures I make....this illness is really hard to diagnose effectively.

Since you recently had a baby, is it possible that the reflux is still a part of your hormonal status as a nursing (??) mother. I know that my hormonal cycles are absolutely connected to the symptoms of my CD. I also had joint pain and went to a rheumy - he's actually my favorite doctor and gives me the best insights into all that is going on.

I've had the small bowel study (yuck yuck yuck on that barium) but not the enteroclysis - that sounds lovely! I've always had a sedative for my scopes, both upper and lower.

When I have upper GI pain I just do a lot of deep breathing and try to relax. I haven't found a way to avoid it with diet, but I do know that drinking black tea, or red wine, or eating dark chocolate is going to lead to pain, so I do those things less.

I hope this is helpful. I'm glad you posted and I hope you get good support here. Please let us know how your appointments go!
Posted 8/26/2010 8:24 PM (GMT 0)

gingerjem, welcome!  I also have acid reflux (although mine was called NERD last time I had an upper GI - Non Erosive Reflux Disease) and hypothryoidism (Hashimoto's).  I am one of those people kazbern mentioned who have to switch up their ppi's every year or so because they stop working.  It also has helped me to elevate the head of my bed using 2x4s.  I'm also in the process of being scheduled for enteroclysis, which I don't think I've had before.  We are doing that and then another colonoscopy and upper GI, as my GI now wants to "make sure" I have Crohn's, 5 yrs after being diagnosed (and it took them 8 yrs to diagnose me).  I also have Crohn's-related arthritis (which really doesn't make sense if I don't have Crohn's!).  My rheumy is also my favorite doctor.  But, I can tell you that it can be very difficult to treat the arthritis without aggrevating the Crohn's...so many of the arthritis meds hurt my stomach and so many of them can cause stomach pain, diahrrea, etc.  I hope all of your tests go well and that the rheumy rules out RA. 

Posted 8/26/2010 9:12 PM (GMT 0)
Thanks so much for your replies! I feel better just knowing that I am not going through this alone. I will most definitely let you know how my appts go - and what my results are. I wish you all the best of luck too! :)
Posted 8/26/2010 11:41 PM (GMT 0)
Hi Gingerjem,

First of all Welcome to Healingwell:)

Sounds like you been showered with umteen titles and dx. It's all very overwhelming!

Just a little introduction from me, I was dx with Crohns in 05' with a resection (18 inches) in 06 where they took out my ileum. It was scarred and pretty much tried to attach itself to another part of my intestines through a fistula...(spider web looking thing) It took a good 2 year flare and 45 pounds for the Dr.'s  to figure out I had Crohns.  I believe I've had issues off and on my whole life. I've had many many test and about 13 surgery's in my lifetime (not all Crohns related)...so....I'll see if I can answer some of your questions.

The upper GI tests that your going to have done..the barrium upper GI...isn't all that bad. You just have to drink chalky stuff and they wait and take pictures of it going through your small bowel. It's a really effective tests for finding out what is going on in the small intestines. It sorta lights it all up for them.... I've done the pill camera too. Pretty painless, you walk around with a back pack all day which is sapossed to record what the pill sees.  Unfortunatley, my got caught for 5 days and then finally came out. My film was no good. Next time the GI said he would place it in my small bowel through an endoscopy.  We'll see:)  The small bowel is just a hard place to see so they do what they can.

I take Nexium also. I am disgusted by the price!!! ...but it's the ONLY one that works for me. I take 40mlgs and I can boost it to 80 if I want to. If I don't take it I get burning up my throat with in hours. Sometimes, I even asperate in my sleep...if I over eat...NOT GOOD! I spend many a night sleeping in a chair!

It is good you've taken out alcohol, candy, pop..and dairy. I would keep a diairy if I were you.  Helps to look back and see what foods work  and what ones didn't. I'd even try avoiding white wheat. I've found that it isn't good for me and heartburn.  I know it doesn't leave alot of food left but there are some reciepes from people here if you look in the back posts.

The test where they put a tube down your nose...yea, that one isn't to comfortable! It helps if they spray some knumbing stuff first...just do what they say and it will go fast!

I really feel for what your going through especially with a new baby. If anything try to just calm yourself and nerves and the heartburn/Crohny symptoms should get better.

Easier said than done right?

Good luck!

 

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