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gatorbites
New Member


Date Joined Mar 2009
Total Posts : 11
   Posted 4/18/2010 1:31 PM (GMT -7)   
Im not new hear, But i don't post often. I have a questions. The doctor said I have mild crohns however i have a lot of pain and problems with bathroom use either I go multipltimes or I cant go at all. My question is I feel insulted that doc thinks that Im only mild so no need for any meds and I just think if the dease is mild ok I get that but should nt my pain level and being miserable count for something?

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8545
   Posted 4/18/2010 1:46 PM (GMT -7)   
Even if it's mild Crohn's, you should still be on medication of some sort, especially if you are already this symptomatic. Also, mild Crohn's has a tendency to progress and worsen if neglected, as I can testify to. I didn't take medication for years because I couldn't tolerate any of the 5-ASA drugs, but I didn't much care because my symptoms were so mild. But in the last five years, this disease has been much worse and the symptoms increasingly difficult to tolerate/live with.

Talk to your doctor again. And if he or she doesn't listen, get a new doctor.

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 4/18/2010 1:57 PM (GMT -7)   
I agree with Tea, mild crohn's can cause a lot of problems long term. You definitely should be on something. Because my case was mild, I wasn't on meds for about 5 years, and in that 5 years the disease caused enough problems to require a second surgery. If your doctor doesn't think you should be on anything as a preventative measure, you should see another GI. Also, you might ask about anti-spasmodics to see if maybe that will help. I know my GI is hesitant to prescribe meds for pain, but she will prescribe anti-nausea and anti-spasmodics, and usually those help me some. My GI thinks I have IBS and CD, so some of my symptoms are IBS related, and those can be helped with mild meds. Also, I can turn to my PCP and he will prescribe meds for pain if she won't.

I know it stinks not feeling well and being told you're only a mild case...it doesn't make you feel any better. Your pain and feeling miserable should be addressed. Just because the disease isn't horrible, you shouldn't be pushed aside and ignored. Try to talk to your GI again and see if they can get you feeling better.
Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D
Coumadin stopped 3/15/10!!!!


tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 4/18/2010 4:45 PM (GMT -7)   
Gator, please talk to your doctor about this again and if he is not receptive look for another doctor. I have only mild crohns and sometimes feel bad complaining about my pain when I know there are others that are so much worse. But the bottom line is when you are in pain your doctor should listen. I was told I had IBS for 8 years because my symptoms were so mild. Thank goodness not being on meds during that time did not adversly affect my colon. It was in suprisingly good shape when I had my first colonoscopy. I had only one bad area of inflammation. My GI doc is fairly conservative with meds because they do not want to give me more than what I need and I like that. However, he listens when I tell him I am in pain or still having diarrhea etc. Because my inflammation would not go away with just an anti-inflammatory I am now on enntocort for probably a few months. He really listened to me when I told him I was not feeling any better. There is a difference between being conservative and not listening to your patient. I was never brushed aside by my doc because I have 'mild' crohns. He takes my condition very seriously and knows it can get worse without treatment. He has already informed me I will on some type of med forever barring a cure. Please be an advocate for yourself if your doctor won't. I wish you all the best and hope you get to feeling better soon.
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.
3 entocort daily for the next few months
hyosamine for daytime
Bentyl for evening
Ferrous Sulfate(iron supplement)


Newbie37
Regular Member


Date Joined Apr 2010
Total Posts : 22
   Posted 4/18/2010 8:45 PM (GMT -7)   
I feel your pain. You are miserable and you want that to be validated. I am awaiting a GI to review my records before they will even give me an appointment. One doctor suspects it is Crohn's but I want to talk to someone who knows what they are talking about. I feel bad complaining too because I know others are worse, but you are a person with feelings and when you feel bad you just want an answer to feel better. I agree you should stay proactive with you doc and meds might be necessary. Hope you feel better soon.

gatorbites
New Member


Date Joined Mar 2009
Total Posts : 11
   Posted 4/19/2010 4:54 AM (GMT -7)   
Thanks everyone so much!! Very good advise!!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/19/2010 6:44 AM (GMT -7)   
Gatorbites I have had mild Crohns for nearly 35 years and YES you still should be on medication. I am maintained solely with Asacol and have been for the past 5 years. If you are feeling bad that is telling you that things are becoming active again and treatment is needed. As mentioned above, if you feel you are not getting the proper treatment, then I would have to agree that you might want to get another opinion. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

joy47
Regular Member


Date Joined Feb 2010
Total Posts : 75
   Posted 4/19/2010 6:14 PM (GMT -7)   
hey gatorbites, Mild crohns is nothing to laugh about thats for sure. I didnt take any meds for a few years. I was having the D all the time bloating and what not. It was mild but it hurt. Later i went to a specialist about 3 hours from where i lived. He told me i needed to be on a maintance therpy drug for the rest of my life. I didnt know. Any how thats been a long time ago ive had crohns for 31 years on my last hope thats humira and its working. If i lose any more small bowel i will have short bowel sydrom and i was told i would have a feeding tube forever. Now I dont know if i would have used maintance drug if it wouldve made a difference at all i will never know. But i do know if i wouldve taken my food choices more serious it would have helped. Like no fried foods, and really watching my fat intake at least for me it does not digest. And also staying away from sweets like cakes and such. I know it wouldve made things a little easier. But i really think your doctor should be doing something more for you. Ill keep you in my prayers. good luck to you. wink

gatorbites
New Member


Date Joined Mar 2009
Total Posts : 11
   Posted 4/20/2010 5:21 AM (GMT -7)   
Thank you! Prayers are always welcomed!!

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 4/20/2010 9:44 AM (GMT -7)   
gatorbites, I'm on my 3rd GI and it all depends on the doctor.  My first one couldn't figure out what was wrong and told me to get a second opinion.  The second GI was an idiot and said my acid reflux was due to eating thai food (I have never eaten thai food and watch my diet very closely).  The third actually has Crohn's and takes it more seriously than any of the others, even thought I don't have many of the "typical" crohn's symptoms.  He treats me like he would any other patient, but when I tried to get into a clinical trial for Cimzia years ago, the trial dr. said he doubted I even had Crohn's because of the lack of typical symptoms.  I got in the trial, but only because my GI said I have crohn's.  So, some drs will treat mild crohn's like you don't even have anything wrong with you and others will treat you like you should be treated and will provide you with medication or whatever you need to function more like a healthy person.  If your dr doesn't treat it like you think it should be treated, find another GI. 
Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


MayOK
Regular Member


Date Joined May 2010
Total Posts : 111
   Posted 5/4/2010 8:21 AM (GMT -7)   
When you all say you have Mild Crohns what is this like, symptoms-wise? I am in the process of being diagnosed...waiting on results of pillcam. Anyway, it's been over a week, and I'm nervous. My colonoscopy was normal, but my IBD Serology 7 flagged me for Crohns. I don't feel like I'm that sick. Always thought I just had IBS.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/4/2010 8:56 AM (GMT -7)   
Mild Crohns is just that, mild. It means you don't have severe symptoms of Crohns like fistulas, fissures, absecesses etc. I have had the disease over 35 years and only have had 3-4 true crohns flares. But I have had 2 bowel resections due to strictures. Hope that helps some.
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8545
   Posted 5/4/2010 10:23 AM (GMT -7)   
I didn't remember posting in this thread; just goes to show I've got no memory :-/

@MayOK - When I got diagnosed my only symptom was having a liquid BM 1-2x a day. Almost nothing, except that I never had diarrhoea before and it didn't clear up after a few days. Most people, even with mild Crohn's, seem to get a few more symptoms than that eg abdominal pain/cramps, passing blood or mucus, urgency, etc. To me, the severity of Crohn's is defined through test results, complications, and symptoms, not the number of flare-ups. A person with mild Crohn's disease could have 20 flare ups a year but the symptoms aren't that bad, while a person with severe Crohn's disease could have a flare up once every 3 years but that flare up lands them in hospital for a month.

Good luck with the pill cam. If it does show Crohn's in the small bowel, get onto a maintenance med and stay on it. I am usually not this didactic but I've had a wake-up call. What the doctors never told me was that mild Crohn's gets worse. Even without fistulas and strictures it can reach a dangerously severe stage. May take a decade or more, but Crohn's by its nature is a progressive disease. Of course, you may yet turn out not to have Crohn's. I hope you don't, tbh, as I wouldn't wish this condition on Tony Blair.

MayOK
Regular Member


Date Joined May 2010
Total Posts : 111
   Posted 5/4/2010 11:06 AM (GMT -7)   
Thanks. Good to know just in case. I wondered about that - if I do have it, then will it get worse?

My symptoms consist of episodes of severe cramping and diarrhea that come out of nowhere and last for hours. I actually passed out from one of these episodes in March and figured I'd go to the doc finally. I do get strange prickly stomach aches from time to time, but they generally last a day or so and are then gone so I don't really think about all of it possibly being interconnected. And I do have mucous with BMs sometimes. No energy, no appetite, thought it was BC pill, which I just got off, so I guess we'll see. But waiting for results is the pits! Hope Prometheus gave me a false positive. Don't know how accurate they are or aren't, as the case may be.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/4/2010 1:22 PM (GMT -7)   
It doesn't mean that just because you are mild now, that it will get worse later. Mine has stayed relatively the same with a few bumps in the road. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 5/4/2010 1:50 PM (GMT -7)   
I have mild Crohns, first symptoms at 19, diagnosed early 30s, 62 now, no surgeries or complications through the years . . . last checkup with the GI who has treated me since he diagnosed me in 1982, I noted that I was grateful I had experienced a fairly benign disease course all these years, unlike some of the patients he has told me about who have all manner of horror-story issues. He said "That's because you took your meds and ate right . . . if you hadn't there's no telling where you would be today." So with Crohns "mild" is relative . . . there is no such thing as Crohns that does not need to be treated, and any doc who says so is wrong.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8545
   Posted 5/4/2010 5:20 PM (GMT -7)   
I wondered about that - if I do have it, then will it get worse?

Sorry, I forgot to add one crucial fact: mild Crohn's gets worse without medication. My mind's not with it these days. But as long as you find a med which works and stick with it for the long term (life, to be honest, or at least until it stops working or a more severe flare up comes along), mild Crohn's has a very good prognosis of remaining mild.

grumpygi
Regular Member


Date Joined May 2010
Total Posts : 266
   Posted 5/4/2010 9:00 PM (GMT -7)   
What does eat right mean for Chron's disease? The grumpy GI doc I somehow defaulted into hasn't said anything about diet or even the future. Did mutter something about a camera but I think I get to scared to really understand . . .especially over the phone.
newby


NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8545
   Posted 5/5/2010 5:00 AM (GMT -7)   
^I was wondering about that, too. In 11 years of seeing different GIs or IBD nurses, diet has never been mentioned. GIs seem to treat diet as completely irrelevant to Crohn's, and so did I, but I'm beginning to wonder about that now. I'm sure that clinical trials have shown that diet makes no difference, but... there's a massive "but" in there somewhere. (And a pun.)

MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 5/5/2010 5:18 AM (GMT -7)   
Every patient tolerates different foods differently, but there are some basic rules: If you tend toward obstructive/blockage disease, stay clear of nuts, popcorn and other rough items that tend to go through the digestive tract in bulk. Overall a good rule is stay shy of spicy hot foods, pepper, jalepenos, etc. in general a good balanced diet . . . but you will always find some patients who say "I can eat spicy Mexican food all day long with no issues," so it is largely a matter of personal experimentation.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8545
   Posted 5/5/2010 6:09 AM (GMT -7)   
but you will always find some patients who say "I can eat spicy Mexican food all day long with no issues,"

>_>

That's me. Or was me. Even I would quail in the face of vindaloo curries and jalapenos nowadays. I had a chicken passanda (like a korma curry; creamy, sweet and mild) the other day and it cleaned me out overnight as surely as Moviprep did. I learnt my lesson; no large quantities of rich, fatty foods for the time being either. I don't know if it's the right thing to do, but I'm keeping meals light and protein-based. My GI tract hangs onto such food for longer before summarily rejecting them, so broadly speaking it probably is right.

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 5/5/2010 7:16 AM (GMT -7)   
I am having this issue too...my new gi seems to be dismissive because my tests show mild crohn's.. though I have been sick since Xmas and was just on the floor in pain on saturday.. I have had diarrhea for that long.. I talked to him on the phone and he said your tests results show mild crohn's... so why am i still sick? frustrated...
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009
Diagnosed with Crohn's March 2010- currently Prednisone, Propranolol and Vivelle Patch
Have taken Entocort, Bentyl, Flagyl, Lomidil, Colestipol
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.


Mormor Vicky
Veteran Member


Date Joined Mar 2007
Total Posts : 684
   Posted 5/5/2010 7:52 AM (GMT -7)   
I'm another one that has mild crohn's.  Started having "D" when I was 19.  My daughter was diagnosed with Crohn's 17 years.  Whenever I brought up that maybe I had it too my doctors only said I had IBS.  When I was 47 I developed a fistula to my bladder and had to have half of my colon removed.  That is when I found out I had Crohn's.  Untreated mild Crohn's can cause big problems if left unchecked.
Vicky / 49 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
 
Daughter (28) also has Crohn's since she was 12.
 
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor, Lisinopril


hammonsma
New Member


Date Joined Aug 2011
Total Posts : 4
   Posted 8/19/2011 10:56 PM (GMT -7)   
i had a colonoscopy and the dr has said i have the beginning of chrons.  he said to treat it as though i dont have it.  also to not watch what i eat with it.  i have symptoms of constipation, diarrhea, stomach spams.  i cant make it to the bathroom in time sometimes.  how embarassing.  for the constipation, they told me to take 4 tbls of milk of magnesia twice a day along with a capful of miralax twice a day.  i think this is a little much.  they finally called me in something for the stomach spasms.  i sort of feel like i need a second opinion.  i have read alot of things on here that says i need to be on medication for this. 

txarmywife
Regular Member


Date Joined Aug 2011
Total Posts : 45
   Posted 8/19/2011 11:32 PM (GMT -7)   
Hammonsma since you replied to an older post (which I myself found helpful) I wanted to reply to you. Im new to the boards myself so am no expert. I struggle with understanding my own diagnosis most of the time...but one thing I do know is the symptoms you described. I too have problems with urgency...accompanied with awful stomach spasms and diarrhea of course. I do find it odd that you were given the advice to take so much laxatives. I'd assume its for your bouts of constipation but even still id think the effects would be very harsh on your system. I think if I were in your position I would consider getting a new doctor. I too have had bad doctors so I do think its important to find one you are happy with and feel you are being listened to and properly treated. Best wishes
---
23 yr old female
2000: Inflammatory Bowel Disease Untermined Type (Age 12)
2002: Anorexia Nervosa After Strict IBD diet/weight loss
2006: RecoverED from eating disorder
2010: Kidney Stones
8/2011: Randall Plaque Disease
8/2011: Flare up immediately following 2 Kidney procedures/hospitalization

Currently on Prednisone Tapering, No liquid dairy, No raw veggies/fruits
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