I think I have Crohn's - Few questions

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 2/11/2009 4:10 PM (GMT -7)   
I'm saying that I think I have Crohn's because I'm not sure if what I went through yesterday was a proper diagnosis or not. Anyway, I am 20 years old and about 10 months ago, I started having severe abdominal pain out of nowhere (strangely enough, most of my pain is around my belly button - however, lately I've noticed a lot of lower abdominal pain and cramping as well), along with severe diarrhea and constant vomiting. My doctor thought that I had an ulcer, didn't even bother running any tests. I ended up going back to see her in November because the pain was getting unbearable and still hadn't stopped. I had also lost 15 lbs in a week. She finally took me seriously and scheduled a bunch of blood tests to check my iron, red blood cell count and to check me for Celiac disease and h. pylori. The tests for Celiac and h. pylori came back negative, and I found out that I was severely anemic. She put me on medication for IBS and gave me iron pills. By the end of December, I went back to see her again because the pills were not working and I still could not keep any food down either. I had an endoscopy done, which came back perfectly normal, and the gastroenterologist suggested that I get a gastric emptying exam done (even though I knew that this was not the problem). I went back to see my doctor after this exam, and told her that I think my problem may be Crohn's. She asked me if I had ever noticed blood in my stool (I have, but only a couple of times). I did not want a colonoscopy done, so she agreed to send me for a barium enema instead, but warned me that I may still need a colonscopy after. I also found out that I will need blood transfusions - yay! :(

So yesterday I went for my barium enema. I started to do the test, and after a few minutes the radiologist asked me if I had had my small intestines checked before. He told started pressing on my stomach and asked me if I felt any pain (lower right and upper middle - where most of my pain is located). He told me that he thinks he knows what the problem is, so I asked if it was Crohn's and he said yes. I'm not sure if this is really a proper diagnosis or not. He told the nurse that he could not go further with the test because it would hurt me too much(again, not too sure what that means).

I have an appointment with my doctor tomorrow. I know that the radiologist wrote a recommendation to my doctor to get my small intestines checked out. My question is, is there any chance that I will be starting some kind of medication for this tomorrow, or would I need to do the small intestine tests too before I can start treatment? The pain has really gotten unbearable and I feel bad missing work all the time. I live in Canada so with free health care, we unfortunately have really long wait times for any kind of tests. I ended up paying for my endoscopy privately (which was not covered by insurance), and I can't afford to keep paying for tests out of my own pocket when I'm barely at work. Is a barium enema even enough to make a diagnosis from?

My other question relates to diet. I have not noticed any links between what I eat and how I feel. Is this normal during a flare? Will I start to notice patterns once I'm in remission?

Also, do drugs like Gravol help at all for the nausea? I am having trouble with even a liquid diet. My weight is down to 87 lbs and I really can't afford to lose any more.

Sorry for the long post - I have so many questions and so many things going through my head!

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 2/11/2009 4:17 PM (GMT -7)   
I think I'd play it safe and wait until tests confirm if you actually have CD or not...as far as diet, some notice what bothers them and others don't notice any difference regardless of what they eat, it's trial and error...Gravol may help but of course once you're actually DX they will try you on meds used for CD and hopefully you won't have to rely on Gravol...don't be sorry for the long post (I've seen and written longer ones) it's only natural that you'd have so many questions and things going through your head, so post away and you'll be sure to get plenty of support.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 2/11/2009 4:21 PM (GMT -7)   
I was typing so fast that I forgot to mention that he could see the inflammation in my large intestine, and he seemed to be quite sure about my small intestine as well. That's why I'm not too sure if that's an actual diagnosis or not, haha :P

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 2/11/2009 4:21 PM (GMT -7)   
It does sound like Crohn's and diet plays a HUGE part in how you feel not just when you are in a flare but all the time. Cutting out high fat foods, sugars, high lactose dairy, red meats, and most junk foods in general should help lessen things, but you have to be really strict sometimes. Try checking out the specific carbohydrate diet or a low residue diet. The specific carbohydrate diet has helped me a LOT.

As for the colonoscopy, you really need to get that done if you want a proper diagnosis. The worst part is the prep but the procedure itself is seriously nothing. The other tests are good too, but this one allows doctors to give a better diagnosis and put you on the right medication. It could also prevent further need for other testing and save you the money.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 5 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


HM
Regular Member


Date Joined Sep 2008
Total Posts : 211
   Posted 2/11/2009 4:30 PM (GMT -7)   
I had a barium enema and I have to tell you that I thought the colonoscopy was MUCH better. The prep (like as already been mentioned) is the worst part. I acrually felt better after seeing my colon and my GI explained things as he went though....for example what he was looking at.

Have you had a small bowel xray?

35/f   proud single mom of 2

Diagnosed with GERD/Acid Reflex 2002

Diagnosed with IBS 2007

Diagnosed with UC, then Crohn’s 2008

Current medications: Endcort 3mg 2X daily, Pentasa 2 500mg caps 2X daily, Prilosec 20 mg 2X daily (if needed), Probiotics, Calcuim/Mag/Vit.D. Flinstones multi with Iron and Vit. C 500mg daily


HM
Regular Member


Date Joined Sep 2008
Total Posts : 211
   Posted 2/11/2009 4:30 PM (GMT -7)   
I had a barium enema and I have to tell you that I thought the colonoscopy was MUCH better. The prep (like as already been mentioned) is the worst part. I acrually felt better after seeing my colon and my GI explained things as he went though....for example what he was looking at.

Have you had a small bowel xray?

35/f   proud single mom of 2

Diagnosed with GERD/Acid Reflex 2002

Diagnosed with IBS 2007

Diagnosed with UC, then Crohn’s 2008

Current medications: Endcort 3mg 2X daily, Pentasa 2 500mg caps 2X daily, Prilosec 20 mg 2X daily (if needed), Probiotics, Calcuim/Mag/Vit.D. Flinstones multi with Iron and Vit. C 500mg daily


Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 2/11/2009 4:35 PM (GMT -7)   
I wasn't sure if they did a small bowel x-ray at the same time as the barium enema. If they don't, then no, I haven't. I was going to suggest a capsule endoscopy to my doctor instead of the barium swallow (or whatever it's called). The prep was REALLY rough for me. I think it might've had something to do with my size now - but I almost ended up in the hospital. I took Pico-Salax, which is supposed to be the easiest to take, but I ended up having a fever, chills, bad sweating, couldn't breathe, severe nausea/vomiting for 6 1/2 hours, abdominal pain that had me in tears, etc. I couldn't even do the second half of the prep. It was pretty traumatic! LOL.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/11/2009 4:43 PM (GMT -7)   

Welcome Valerie to Healingwell.  I sure wish you would have come to us before you had the tests.  For one thing I would have told you was to have the colonoscopy NOT the barium enema.  At least with the colonoscopy you do the prep just like for the BE, BUT with the colonoscopy you are sedated so you are not aware of the discomfort.  I have had 2 BE in my life and I have had this disease for over 30 years and I will tell you they will never do another one on me.  The colonoscopy is a much better test and you are probably going to have to have one anyways.

I am not sure if the doc will give you meds or not, I guess it depends on what the test results tell him.  Based on everything you are telling us it does sound like Crohns.  As far as diet goes that is a pretty individual thing for most of us.  I would try keeping a food diary of which foods bother and those that don't.  Right now since you are so sick I would probably try to stay on a pretty bland diet until they get you sorted out.  Soups, baked potato's (no peels), toast, things light.

I sure hope they get things figured out for you soon and get you on the road to recovery.

Hugs,

Gail *Nanners*


Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 2/11/2009 4:49 PM (GMT -7)   
Thanks Gail! I kind of regret not having the colonoscopy done too - when I was telling my doctor I didn't want to do the colonoscopy and she suggested a barium test, she wasn't specific on which one and I assumed she meant the follow-through! When I saw what I was booked for, I kind of regretted it, LOL. The radiologist seemed to be able to tell what it was right off the bat - which I'm hoping means that it was very clear on the images - but I know that I would like to do the capsule endoscopy as well. I'm hoping that the two of them combined will be enough for a full diagnosis, but I guess I'll have to suck it up and do the colonoscopy if I really have to - I guess I'll have to get them done eventually anyway, lol.

I think part of my problem with the food could be that I eat so much bad stuff that it doesn't have the time to pass through my system fully when I eat the good stuff - LOL. I have no self control with food, so I think that is going to be the hardest thing for me. It must be really rough changing your diet so drastically - I love just about all the foods that people apparently have trouble with - spicy foods, fried foods, fatty foods, lots of sugar, etc.

Blossom
Regular Member


Date Joined Mar 2008
Total Posts : 176
   Posted 2/11/2009 5:45 PM (GMT -7)   

Hi Valerie3,

I agree with the others who've posted a message, that a colonoscopy is the "gold standard".  I know the prep is miserable, but when the procedure is completely done, you'll probably be thankful that you have an accurate diagnosis.

You might want to try the larger volume prep (like GoLytely), as it's definitely much more gentle on the system.  The huge volume is awful, however, there is much less nausea and cramping.

Since the radiologist mentioned something about your small intestine, I'd ask lots of questions before considering having a capsule endoscopy.  If your small intestine is quite narrowed, I've heard that the capsule can get stuck and cause a blockage.

While you're going through this waiting period, I'd stick to a "low residue" diet---chicken, white rice, noodles etc.  In other words, stay away from raw veggies, raw fruits, and don't eat things that have a lot of fiber. 

Good luck to you, and I hope your pain subsides soon. 

 

 


54 year old female;
 
Have had Crohn's of terminal ileum for over 9 yrs, but finally accepted diagnosis when it was confirmed Feb. 2008.
 
Allergic/hypersensitivity to Pentasa, Entocort, and 6-MP.  Recently started Humira in December.


Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 2/11/2009 7:30 PM (GMT -7)   
Oh, the high volume preps are easier on the system? That's encouraging then, after the prep nightmare I went through, I never wanted to do it again... I thought that Pico-Salax was supposed to be the easiest one to take. I guess they only meant that it's easier to drink, lol. It's also interesting that you mentioned about my small intestines possibly being narrowed, for the last month or so I've felt like I haven't been able to fully empty my bowels (including after taking the Pico-Salax, actually), so there could be something doing on with that. I'll definitely make sure that I don't have some type of obstruction or anything before having a capsule endoscopy done - hopefully I'll be able to actually see the pictures and get to discuss them with my doctor when I see her tomorrow.

I'll keep everyone posted on what happens tomorrow. I'm just glad that some sort of progress is being made finally, I was starting to wonder if this was all in my head or something.

Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 2/11/2009 9:15 PM (GMT -7)   
Hi Valerie3,

I'm sorry to hear about all you have been going through. Not fun! I too think you need to have a colonoscopy and not the camera pill. Your GI needs to be able to take biopsies in order to confirm your diagnosis. Are you seeing your GI or family doctor tomorrow? Did your GI explain what a gastric emptying exam is? I am concerned that you have crohns in the T. Illium. That would explain the location and extent of your pain. Please keep us updated.

Wishing you the best,
Julia

Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 2/12/2009 4:21 PM (GMT -7)   
Specialists are extremely hard to come by here - we have a major doctor shortage in Canada. I was seeing my family doctor. I went back to see her today, she said it seemed quite clear that it's Crohn's. I lucked out and she happened to have ran into the best GI in the city yesterday at a conference (right after she got my test results), and was able to get this doctor to take me as patient after telling her. I'm thrilled about this because apparently, the only other time this doctor has ever taken one of my doctor's patients, it was because it was my doctor's sister.

My appointment is on Thursday. I'll feel a lot better hearing what a GI has to say about all this, and hopefully I'll be able to get through all the other tests quickly.

Also, Julia - The GI I saw for my endoscopy told me that he wanted a gastric emptying exam done because his theory was that I had idiopathic gastroparesis (stomach not emptying properly/fast enough/whatever). To me it's quite obvious that this isn't my problem - if it was, I doubt I'd be hungry so quickly after eating. He also completely ignored the fast that I told him about my diarrhea, he seemed to be focusing more on the vomiting, as did my doctor at first. Not that I blame them though - I was unable to keep a single meal down for a good 2-3 months!

Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 2/13/2009 3:52 PM (GMT -7)   
Hi Valerie3,
 
I'm so glad that you are getting in to see a good GI.  I am in Canada also, Alberta.  Please keep us posted.
 
Take care,
Julia
 

Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 2/19/2009 9:55 AM (GMT -7)   
Just a quick update - I went to my new G.I. today. She is amazing! I love her. Anyway, she told me she's 99% sure it's Crohn's. She gave me Pentasa to start, she said she didn't want to put me on anything stronger unless she has to. She scheduled me for a colonoscopy March 10 just to be thorough. She said that if I don't respond to the Pentasa by then, she will try me on some other drug.. I forget the name, but she said it's a steroid that only affects your G.I. tract instead of prednisone, so it doesn't have all the nasty side effects. She said she'll most likely have to put me on this one, but it doesn't hurt to try a weaker medication first.

I feel a lot better now, really relieved and happy to be starting some kind of treatment.

Have any of you taken Pentasa before? How'd it go for you? I'm taking 4 500 mg pills twice a day.

lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 2/19/2009 11:30 AM (GMT -7)   

From what I can gather pentasa seems to be the first drug most people are tried on when they're diagnosed before stepping up to anything stronger, I unfortunately was allergic to it (luckily I was in hospital already when they gave it to me!) so didn't have an option but to go straight on to the immuno-suppressants.

I'd say from the description it sounds like the steroid she was on about is entocort, which works brilliantly if your Crohn's is just in the small bowel but unfortunately mine was too widespread to be treated with entocort.


 
 


Jordan59
Regular Member


Date Joined Feb 2009
Total Posts : 39
   Posted 2/19/2009 2:39 PM (GMT -7)   
Don't sweat the colonoscopy. It's worth it and will show exactly what issues you have. I've never been on pentasa, but I like the conservative approach your GI is taking. I went straight to prednisone. Bad side effects but it sure worked fast. Now on azathioprine (my condition has worsened after 40-some years).

Please report back. I'm interested in your GI's opinion about diet and Crohn's.

Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 2/19/2009 6:55 PM (GMT -7)   
Thanks Jordan! She told me she COULD try me on something stronger if I wanted immediate results, but she really didn't recommend it because it would be harder on my body. I'll definitely have a chat with her about diet next time I'm down to see her (couple of weeks), and let you guys know what she says. She really seems to be a good doctor though, although her specialty isn't IBD. She said that if I start having a lot of complications, she'll probably end up referring me to another doctor at the hospital who deals only with IBD.

I figured out the name of the steroid she wanted to try next - I believe it's budesonide, so lilcrohnie, you were right! It's too bad that yours was too wipespread. I am really thankful that mine doesn't seem to be too bad (so far). She said that she was impressed that I've gone nearly a year on my own though, haha.

littlemissmuffet
Regular Member


Date Joined Feb 2009
Total Posts : 269
   Posted 2/20/2009 7:09 AM (GMT -7)   
Hi Valerie 3.
 
I have been on budonside and found it to have very few side effects.  Just had heartburn - which I took Ranitidine for and also nightmares. I have been on a much stronger steriod - predislone and that had much worse side effects, would shoud Budonside anyday.
 
I too have had 2 colonoscopys and found them bolth to be fine, was sedated and didnt feel a thing. I have also had a barium meal, which I hated. My poor mum came with me and had to leave because I was balking so much when they put the tube in that she wanted to be sick.  I would go for the colonoscopy everytime.
 
Im now on imfliximab (I live in the UK and I believe it is like remicide) I have an infusion every 8 weeks. Although it hasnt brought my crohns completely under control it certainly helps and it keeps me off steriods.
 
Good luck
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 04, 2016 3:35 PM (GMT -7)
There are a total of 2,732,719 posts in 301,047 threads.
View Active Threads


Who's Online
This forum has 151202 registered members. Please welcome our newest member, Ed Ski.
343 Guest(s), 3 Registered Member(s) are currently online.  Details
mtm3461, MauiViv, BKelly


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer