Anyone with MILD Crohns.

I know this might sound like a stupid question.

But is there anyone out there with MILD crohns who has it under control with medications or without meds and who has been in remission for quite some time.
I've seen three specialist so far, first saying it was mild crohns other two said it wasnt crohns but IBS, family practioner decided to send me back to the first specialist, see him again in August. Because my family doctor feels that it maybe early crohns since no IBS medications has worked and I've tried them all, only time i feel good is when I'm on a low dose of steroids.

Just questioning if there is hope for someone with MILd Crohns.

Thank you.

My doctor thinks I have mild crohn's. However, I have a lot of other health problems that aren't mild. I'm sort of in remission except my gastritis is still active. Yeah, mine is mild because I can control a lot of it with diet and probiotics. I almost never have D but I do not digest food very well so I don't weigh much. In a way, I guess my crohn's is different. My metabolism is really off for some reason--can't gain weight no matter how much I eat. Now I seem to be digesting better but I still can't gain weight.

There are three possible reasons why other than crohn's causing my weight loss. Endocrine, surgery side effects or recurrent strep infections. Who knows. All I've got to say is I'll be happy if I can have a day without feeling weak and dizzy all the time.

Hey buddy, Yeah I been diagnosed with mild-moderatre crohns. and also IBS. I have a combination of the two. So sometimes It seems Im flaring when it's just IBS. Other times It feels like IBS and it's actually a flare. It makes it hard to medicate because sometime i think its my Crohns and I start the prednisolone but it doesnt work, that's when its IBS. other time the meds work and I know it was Crohns then. Mild Crohns is annoying because it you can feel awful but still look good on the outside, meaning alot of people quite of often don't understand how you're feeling. I had 2/3 of my colon flaring the other week and was in pain and so tired. But I had colour in my cheeks and wasn't groaning or being dramatic and the ER doc sdaid I looked fine so sent me home without tests. The next day I became alot worse and CT scans and Xrays showed how I was sick. If only that stupid ER doc the night before took me seriously and checked me out it could have been avoided. That is the prblme with Mild Crohns. We have a habit of looking ok even if we feel like shit. So doctors can be very unhelpful to us. Hope you learn good tricks to manage yourself. if you have been diagnosed with Crohns through colonoscopy biopsies, you probably have Crohns. I'd ignore the other doctors who said you have IBS. There is no such thing as IBS. That is just what they call a GI problem they can't diagnose. Out of curiosity on what tests and basis was your first GI diagnosing Crohns on. was it a positive colonoscopy report ?

Hi All.

Thank you for your replies.

@ Wolfem.
I'm sorry to hear you are still having issues, and that after your resection the crohns seems to be a little more under control. I am surprised to see that someone with Mild crohns actually needed surgery is this common.

@ Tim.
As for my tests. The first doctor did a colonoscopy and the biopsies came back clear in the Colon but with tiny ulcerations in the Terminal Ileum which were unspecific. 2nd and 3rd doctor did pill cam and CT enterography which both came back negative or inconclusive. The 3rd doctor did a colonscopy and the results were same as the first one performed the year before. I have gone through so many tests I don't think I have enough toes and fingers to count them on, and all have came back inconclusive or negative. I have an appt with the first GI in August, and my family doctor thinks I will need to go through another fun colonscopy, this doctor likes to see things for himself. So this should be fun. :O(, We all love those preps. I know forsure after my experience I will ask him if I can use Pico Salex instead of fleet.

Thanks again all. Just wishing there was more good stories about Mild crohn's.

Tim -- I think my doctor is under the impression that I might have the same fun-filled combo that you've got going: mild Crohn's and IBS. The rationale is that I was finally responding to the corticosteroid I was prescribed (budesonide), only to get way worse this past week due to stress (it's a notoriously stressful time of year for me at work). I'm not sure whether to believe that 100%, but in some respects it makes sense. Anyways, I love my doc, she's very thorough and kind, and I'm going to see her next week for an appointment. I'd be interested to hear how you deal with this combo, and if you've noticed any difference between what triggers a flare that seems to be IBD vs. your triggers for IBS (having symptoms where the meds don't work). Also, if anyone wants to weigh in on mild IBD and IBS going hand-in-hand, feel free.

Daunting -- I'm new to this whole thing and as you've probably gathered, I'm not well yet. That said, I was doing better for a little bit there, so I know it's certainly possible. I've read through some of your older posts and it sounds like you've had a really tough time over the past year, but hopefully you'll get the right medication(s) to help you out soon. That's what I keep telling myself, too; not sure if what I'm on will do the trick, but time will tell, and if not, I'll try something else!

My next door neighbour has 'mild' crohns. He's in his 60's now. Very few problems for him. His son on the other hand, has had horrid problems with his crohns. The father has always eaten fairly low residue and stayed on pentasa for some time. Only a few flares here and there, stress induced for the most part. His son is almost completely disabled on the other hand.

Me, I'd say (before diagnosis) I went a good 15 years without much trouble except for chronic diarrea. The problem was, on little to no medication, the inflammation created a lot of scar tissue and other issues. Which led to a complete stricture and bowel perforation, and of course....ta da...a stoma. So, as others have said, mild can turn dangerous in a very short time. The issue is always what is going on inside without you knowing about it.

Ok, I could be wrong here, but maybe whether or not it's considered mild, moderate or severe also has to do with each patients perception of it in their own case. I am not sure my GI ever actually said to me that mine was any of the above, and while I can look back and see that in the first few years,especially, mine had to be moderate to severe. I could never go long without being put back on meds, etc. Not sure what my GI would classify this flare as, but I did go 7 years without any flares after my resection, so in the big scheme of things, I consider mine mild to moderate. Especially after reading how tough of a time some of the rest of us on here have. Did that make any sense?

Hi Cheryl -- I think when complications start popping up that go beyond mild or moderate inflammation (severe narrowing, blockages, strictures, fistulas, etc.), that's when you start to get into "severe" territory. That's not to say that people with "mild" Crohn's can't feel terrible when they're flaring! But that's sort of the definition as I understand it, anyways. If you had to have a resection because of a stricture, blockage, or built-up scar tissue, I could see how that would fall under the "moderate-to-severe" category, for sure.

Thank you all.


I think that is my main concern, Doctor 2 and 3 have this wait and see approach where I feel I should be treated pro-actively. I am so scared that it goes untreated and it gets so severe that I too will need a <stan>. My brother in law (not related) had severe severe UC for 16 years and now has a Jpouch, and my nieces husband has severe crohns where he was doing very well for a while but couldnt afford his maintenance drugs so he stopped taking them and is now in the hospital awaiting surgery for yet another resection.
These things scare me, I believe being on the right combination of drugs can do the world of good, and i hope I am right that by being on the right medical cocktail that the disease will progress more slowly. I am 32 soon to be 33 and all 3 doctors said because I have mild at my age there is a better chance that I will never get severe but yet if I'm not on any drugs I feel that I will get worse.

Am I stupid in thinking so.

Hey Daunting, The best advice I can give you is to make sure you have a empathic patient doctor. IBS is just what they call something before they known it's real name. In other words it doesn't exist. They are saying you have IBS that is just what they will say until they have more evidence of Crohns or UC or microscopic colitis, diverticulitis. That fact you responded to steriod and have ulcers suggest some for of IBD. What it is only time will tell and a good doctor. AS long as you aren't getting any other symptoms like bad pains or tiredness that is really affecting your work maybe see how you and your doctor go with your low dose steroids. If you start getting bad pains and tiredness and blood and losing weight then definitely arrange tests as if you have mild crohns it can go in and out of remission so quick they can miss it and then they will always be giving you indecisive answers which is a pain and will slow Down your treatment to recovery. Hang in there buddy. There are plenty of resources and just ask for help on any symptoms you have and there are different types of specialist people can recommend on here for you to see. It can be tricky when they are having trouble getting a clear diagnosis.

@JDTM Yeah I was diagnosed with Mild-Moderate Crohns Colitis all through my colon and was placed on Steriods and amino salicylates and for a while was good. Problem for me was pain issues as even when I had recovered from other symtoms I always had pain including when I had pathology showing my crohns was in remission. Thing with it being IBS as well is I maybe getting pain, nausea and the works so I naturally get told by my GI to start up the Steriods and up the Mesalazine and when I don't respond to that I usually end up in hopital. I definitely have Crohns which accounts for the symptoms when it shows as active through blood work and Ct scan and all the rest but if all my test come back negative and I'm still in bad shape, they don't know what it is. The say after a flare there can be on going residual sensitivities and certain food sets me off and i become super cramps and tired and nausea. I have had that much problem with pain and cramps to and the steriods not helping I've had to see a pain specialist who had to put me on some types of pain killers. They worked for cramps but didn't stop the tiredness or nausea. So the thing is they are saying I have IBS as well as Crohns and I don't know ho that goes for treatment whether I need to watch my diet. It certainly is weird. All of us people with IBD whether it be Crohns, UC, Microscopic colitis have slightly different sets of symptoms and there is no magic medicine. My current diagnosis is just to me my doctors way of saying there is more going on than Crohns but we haven't been able to catch it yet/ Being taken seriously is my biggest frustration this year as some of my doctors are driving me around the bend with the amount of changes they have been making to my treatment and none of it is working. TO make matters worse they are now accusing me of not taking medication and perhaps thats why it isn't working. Mot GI doc really are clueless. IBD and IBS are both bad things to have. But at least they are not terminal, it's just about finding good doctors and achieving that balance and most of all not letting it take you over. Make Crohns or IBS something you have not something that has you. It's all still relatively new to me as well. I been diagnosed with CD for only about 16 months. SO I'm still learning too. Good Luck guys. Let me know how you go too

Tim, I think we are still learning, which is a great thing! Hang in there!

Daunting -- I think that the general consensus among the medical community is that yes, a maintenance drug should do what it says -- maintain -- and you should keep taking it if you're on it. There are certainly people on this forum who are not into that idea, and they have every right. Some people can control their stuff with diet, but just like with medications, there's a learning curve (and a steep one, depending on your diet limitations and what you're trying/what works for you). Personally, I'm a little more wary of the more heavy-duty drugs, but after a certain point, you just want to feel better. I wouldn't panic about things yet, but I hope that you get a solid diagnosis soon and a treatment plan happening. You're not "stupid" to think that it's not a good idea to be on the right medication (quite the opposite, in my opinion), but realize that stressing won't help you right now (easier said than done... trust me, I know). Do the best you can, and try to realize that you're actually being very pro-active in following up with doctors, setting up appointments, and trying to figure out what works for you! (By the way, I'm 32 as well!)

Tim -- wow, our cases are very different! Once again, just goes to show how different CD is for everyone. Anyways, best of luck to the both of you as well!

Terriernut said:

Which led to a complete stricture and bowel perforation, and of course....ta da...a stoma. So, as others have said, mild can turn dangerous in a very short time. The issue is always what is going on inside without you knowing about it.

Click to expand...

Strongly agree with that. I always considered myself to have "mild" Crohns. Right now I have a temporary ileostomy after needing open surgery to remove a large fistulated mass at the end of March.

@ Tim

I do have other symptoms, I am always tired as of lately, although all my blood levels are fine. I get terrible cramps in my legs and in my toes. There are some days I have pain in my abdomen, I have seen blood once or twice in my stools (sorry TMI). The big issue is I have diverticulosis of the Large colon and so my family doctor thinks that is where the blood comes from because usually blood from the TI is rather dark and mine is normal color. I have urgent bathroom trips, sometimes D but others just Urgent go go. I do take lomotil when needed. But sometimes I wonder if a low dose of entocort all the time can be the answer, but I'm scared to ask because of all the side effects but here I am wondering which is better.

Thank you all for comments.

Hopefully this new doctor (which was the first) can shed some light on the whole situation.

I have been dealing with those darn foot cramps too. Not dehydrated, and am assured that my potassium levels are ok, so not sure what it is. Used to blame it on prednisone, but not on that, so no clue.

Magnesium, B12, vitamin D. All these vitamins tend to be low in crohnies and yes, cause muscles cramps (especially magnesium)

Well, possibly magnesium for me then, as I give myself the B12 shot every 2 weeks and taking 5000 iu of D3 daily.

I also went from having a Crohns diagnosis, to IBS back to now moderate Crohn's. I got shuffled between doctors, who looked over individual test results instead of looking at the big picture. It started with severe inflammation in my ileum in my first colonoscopy, yet in my second colonoscopy my genius of a doctor to quote "can't remember what it looked like" and only took one biopsy during the procedure. She then told me I had severe IBS, even though I had sky high inflammation markers in my blood ( c- reactive, e sed rate) and positive for ASCA antibodies. I was then treated for IBS, which failed miserably. My new doc, who just from looking at my charts, was shocked at the IBS diagnosis, and rediagnosed me with Crohn's and gastritis... IBS, crohns and gastritis are all so similar and it's just finding a good doc to recognize the differences, and the same with mild-moderate-severe. This is why the disease is so freaking frustrating, so many different symptoms, different tests, different standards, and not one conclusion on how to properly treat it. Some of us never experience a fistula or abscess in our lives, yet still have uncontrolled symptoms, while others go through dozens of procedures and surgeries. Oy veyyy

I feel better now without medicine than I did while I was on it. I'm currently on no medication and bike 10km a day to/from work where I work on my feet at a fast paced job. I just did a scope in April where my doctor said I have active crohns so I'd consider mine awfully mild in order to do what I do without being on meds.

Daunting you sound alot like me although our symptoms are different in ways as is unique with everyone. But as far as what you are going through you sound like you just need some answers. I am having trouble finding a medication I can take and it fixes my symptoms. Although I'm not so naive to believe there is a Magic pill I can take and make things all better but I do hope and strive for something to keep my feeling well enough that my mind is not constantly wondering why my stomach is misbehaving. It can really distract a person from doing their daily activities and enjoying themselves. Having uncontrolled symptoms is very,very annoying. Things I have dealt with because I have not be fortunate enough to receive a clear cut diagnosis that responded to medication straight away, which some lucky people get. and know that patients who dont respond immediately to medicine and become symptom free can frustrated doctors and they label us as problem patients. I have had doctors throw their hands up in the air and almost blame me for not responding to their treatment. And this isn't fair. It is not my fault my body doesn't have the textbook condition of CD and thus respond to the drugs they are hoping to have me respond on. In your case you are searching for answers. You sound like you are a definite IBD patients. When they say you have IBS that is just their way of saying they haven't performed enough tests to find out what it is or are too clueless to understand what it most likely is. Now Let's assume you have Mild Crohns which seems to be the case and it sounds like it is very good at hiding from your doctors and all the tests trying to catch it. What you need to do is find a doctor who will promise to manage your symptoms and find out the root cause of why you are experiencing what you have. The time it took to get clear answer for me was not necessarily the problem I had in my experience it was the way some doctors would talk to me like crap and/or tell me that according to my tests the amount of pain I was describing having was a lie and that I am perfectly fine. They were telling me this when I was going to the toilet 6-12 times a day and like you had blood and they expected me to think that was normal. Go back and see your first specialist and explain you need someone to get to the bottom of your situation (no pun intended). Also during this period of searching for answers make sure you have a way of managing stress as I know between all the compassionless doctor visit I had and lack of answers and all the time I was missing off work due to being ill made me stressed and my condition was made worse. Whatever type of IBD/IBS you have they are all made worse by stress so try to keep a positive mental outlook despite how hard the searching is. Believe me you're not alone. I and all these other lovely people have unfortunately had to journey through the same gauntlet of doctors changing their minds and even once they've made their minds up can still run you round in circles. If you feel Entocort or another steroid helps then you need to discuss this as it you maybe right and it probably is 100% necessary to have some sort of maintenance drug to keep your symptoms in check. If you can't get into the specialist soon to talk about it. Talk to your trusted Family Doctor, let the guy know you're a human being with real problems and want to feel healthy again and you are not happy with other doctors belittleing or minimizing the distress and problems it has on your daily health and well being. Hang in there and keep us posted on your updates. lots of us are going through circumstances alot like your at the moment. just some of us are at different stages and stuff. But everyone on here is here because they want to help. This is a great site for us to help each other. I want to have you keep your progress posted and I'll let you know how I am going and any tips I may have. Until next time. Look after yourself.

PS: Don't ever let anyone make you feel stupid for describing the symptoms you have. If a doctor or nurse you see tells you that you complain too much or doesn't want to listen and take your concern seriously. never use him again. fortunately there are plenty of very caring and compassionate doctors out there who will find out your issue and help you get back to a level where you are no longer constantly bothered by being ill. you just might have to meet a few of the idiot ones first before you find the good ones. Best of luck mate - Tim

@ Tim.

Wow I'm speechless.

You have pretty much descsribed how I have been feeling for the past few years. My initial Dxed from the first doctor was in April 2010, 2 years has passed. The only one I have been able to really rely on during all of this time was my family doctor and My husband. The first doctor did give the first DX of crohns but I found him to abrupt for me, I am a sensitive person and wanted a different doctor for that reason, but now have decided to give him a second try. My family doctor said he will help me with things if needed, this specialist is in my home town and my family doctor sees him often at our local hospital so he said if I need further clarification he will be there by my side. So I think I am making the right decision of going back to him. Plus this doctor if needed will take me pretty much the same day if I need him. Which is good. Hearing I had crohn's in the first place scared me real bad and didnt know what to think, took me a good long time to come to terms with it. I was always hoping for a different answer and that miracle pill that you so spoke of. My family doctor has tried all sorts of medications for IBS since that is what I was told I had, and none of them worked, some made the D worse others did absolutely nothing except put me to sleep. Yes I do agree with you stress is a big issue, something that I am learning to deal with, I have been to a phycologist who has taught me some techniques for stress, but I think knowing what is actually going on with my body will be the best stress relief possible.

I would like to personally thank you Tim for your words, It was very appreciated. I was questionning returning back to this doctor but now I am certain I am doing to the right choice.

I agree daunting. I have mild crohns. Dx in 2002 by pill cam and ct and sbft. Colonscopy then was negative but last few have showed where there was inflammation that is in remission. Was steroid dependant over 3 years. Was treated by pcp for 7 years but dx by general surgeon then confirmed at cleveland clnic. Been on pentasa for over nine years . To get off steroids had to go on humaria 9

@ Mark74

Thank you Mark74

It is good to know that I am not alone. I do have a question for you, now that you are on Humira, how do you feel, and how dependant were you on steroids. I don't need alot of steroids to feel good, so I'm curious myself if it is possible to be left on a low dose of steroids or entocort for a long period of time. Or would this negatively effect my health more so than crohns.

I was on 9 mg ofc entocort and occasional steroid injections when I tried tapering. I could go about 2 3 weeks after tapering then bad flare and back to nine mg. I have ostepenia from the steroids.
If low dose as long as entocort not predisone. I fought it hard going to humaria due to nasty effects had with remicade. I
I love my pcp and trust him with my life because if not for him I wouldn't be here due to the side effects remicade.
He told me the steroids were doing damage I couldn't see (blood sugar, heart, bp, other internal organs ect )
It was the best move I ever made. Putting on weight for first time in years, no daily pain, bm solid not urgent. However if I am late onshot the symptoms start. Was ast every two weeks then stated have severe symptoms st ten days they moved me to ten days and symptom free again.
I also have ibs .

@ Mark74

I think that is what confuses me how can someone have mild crohns and be already on the major drugs I thought they were solely for the people who are severe. Maybe I still don't understand enough. Did you say it was safe to be on entocort long term but not prednisone.??

Safer then predisone but still has side effects.
What mg you on? My local gi kept saying it was ibs and I told him wasn't. He did colonscopy and no inflammation which convinced him more. I told him to do the pill cam but wouldn't. Sbft showed inflammation but mild.
he said your doing better on antibiotics I am giving so ibs .told him I was having to see my pcp for steroid injections to stay this way.
Basically he said why don't you go to your gi st cleveland. My gi left cleveland and went to tennessee but referred me to bickston at vcu and he is excellent. He read all reports said was not ibs causing my symptoms because steroids will not do anything for ibs.
He said steroid dependent and time for humaria.

I'm presently taking 50 mg for 5 days then I'm good for a little while. I still don't feel the best on 50mg I actually feel better after I stop the prednisone for about two weeks after. I'm sure on 10mg a day I could feel good. I am currently taking 6 salofalk a day as well and believe I'd do better on a different type I was thinking of asking to try liadyl or another type I've already tried pentasa and I would choke on it all the time. I haven't tried anything else as of yet.
It's nice to hear that I'm not the only one having issues. I feel it would benefit the ones with Mild crohns to be treated before the damage appears would it not.

What side effects does entocort have. Sometimes I'm starting to think sometypes of side effects maybe worth feeling better.



Thank you again for replies. It helps so much

Same as predisone but entocort side effect takes longer to show up since mainly absorbed in gi system vs blood.
Message me anytime you want maybe thais is entry I have this disease is to help others

Hey Daunting, great to hear you have made some decisions about which doctor you will see. I too am a sensitive person and having doctors change their minds around and say certain things had a big impact on me and made me more stressed. Good you are staying on top of your emotional well being with a psychologist. Hang in there, I pray the doctors you see from now on will help you with your condition and find some plan that will work rather than running you around in circles with IBS drugs. And let's face it if you have an IBD whatever one it is, IBS drugs will not do much to help. You need someone who is caring, experienced and knows how to treat the disease by helping his r her patients with the obvious physical aspect and also the emotional aspect. Thanks for your appreciating. I'm glad I have been able to help. I think us knowing we're not alone in these circumstances is the help I get. As not being alone and hearing others share similar stories is always helpful for some strange reason, Catchya all later

My daughter dx is mild chronic crohn, her gi believe that we need to get her to remission and then some time in future try to go off maintence meds.

• Her treatment so is based on the chronic nature of her disease not her level of disease.

Daunting said:

Hi All.

Thank you for your replies.

@ Wolfem.
I'm sorry to hear you are still having issues, and that after your resection the crohns seems to be a little more under control. I am surprised to see that someone with Mild crohns actually needed surgery is this common.

@ Tim.
As for my tests. The first doctor did a colonoscopy and the biopsies came back clear in the Colon but with tiny ulcerations in the Terminal Ileum which were unspecific. 2nd and 3rd doctor did pill cam and CT enterography which both came back negative or inconclusive. The 3rd doctor did a colonscopy and the results were same as the first one performed the year before. I have gone through so many tests I don't think I have enough toes and fingers to count them on, and all have came back inconclusive or negative. I have an appt with the first GI in August, and my family doctor thinks I will need to go through another fun colonscopy, this doctor likes to see things for himself. So this should be fun. :O(, We all love those preps. I know forsure after my experience I will ask him if I can use Pico Salex instead of fleet.

Thanks again all. Just wishing there was more good stories about Mild crohn's.

Click to expand...

I guess mine was severe because of the surgery and now its mild. Well, actually I guess it depends on how you look at it because mine would be horribly severe if I ate eggs and drank milk all the time. If I eat out I'll get sick. I ate a couple of gluten free protein bars and now I'm in a flare--not digesting food. If I eat absolutely anything that I have an intolerance too--its all downhill. If I continue to eat those foods and eat fatty foods then I could end up with another abscess rather quickly (the previous one happened very suddenly). So, I guess my crohn's is severe/moderate but better managed with diet and probiotics.

Maybe it depends on location? I still have crohn's in my ileum and duodenum. Well, they say there are just mild ulcers. I have mild ulcers in my stomach too but they keep telling me I don't have crohn's in my stomach (whatever). They don't even know what causes crohn's to begin with so how can they possibly know that I don't have it in my stomach? If the biopsies come up negative for tissue morphology maybe that is just because the disease isn't as advanced (just my opinion).

Hi All,

Thank you again for your replies

@ Wolfem
Its good that you know your triggers. That is a big help in controling the disease, however as for me I have found anything that I can consider a trigger. Eggs are actually one of my safe foods. My big issues are foods with too much fiber, although I'm suppose to have fiber for my diverticulosis. I'm actually considering visiting a dietician after my next Gi visit to consult on how to manage both diet requirements. As for Fatty foods as long as I don't eat them every day, I seem to be fine. But I never ate fatty fatty foods before anyway. What I find hard is avoiding vedgetables and fruits.

@Catherine
I've never heard of treating the condition for the crohnic nature of the disease and not the level. Maybe that is something I need to discuss with the doctor. What would the difference be in the treatments I wonder??

@ Tim
Thank you again and you are right. Taking care of the emotional aspect as well as the the physical is very important. Again you a right that I have been going in circles not knowing who to believe and I do have my fingers and toes crossed hoping things will be different.

@Mark74
Thank you Mark the invitation to message me anytime goes for me as well. Yes speaking to people about our conditions helps us learn and cope.

I honestly think learning to cope and learning to adapt is the big issues of having this disease. When I first got the bad news I would cry and cry because of the fear that my life was over, that i wasnt going to beable to work anymore, that i would one day have to wear the bag, or that I would have to stop all what I've been use to doing. I still work I still do the things I usually would do, I just learned to adapt and change certain things. Sure i get tired easier but I now go to bed earlier. As for the bag that is still a thought that still scares me silly but If it is needed fine i will just have to learn to adapt once again. With friends and family we can all get through this. I still find it hard to believe that this is one disease that no one understands even though it has been in existence for a very very long time.

My family doctor kept on me till I went to a cou.nselor. I had some major side effects with the remicade and was having an extremely hard time accepting this. I was mad at God, didn't have strength or energy to teach my sunday school class. A close friend let me work as the accountant st his medical practice so I would have health insurance. I would work a few hours then have to lie down for a while.
I highly recommend counseling to anyone with this disease.

Daunting

Although Sarah's crohn is only mild to moderate at the most. At the time of dx her anemia was so bad her levels were just above where her gi would consider transfusion. She had severe weighloss and was down in 44 kg with BMI of 15% and sleeping 20 hours a day, her period had ceased and was in severe pain.

The believe is the she had crohn's for almost 3 year for dx. Doctors had been treating her for anemia which was not responsing to iron tablets.

This is why after much discussion between the specialists at her gi clinic, it was decide to treat her using her symptoms (anemia, weighloss) not her level of disease.

Hope this make sense.

@Catherine.

Thank you for the explaination.

How is she feeling now. Hopefully she is feeling better.

Hi Daunting,

I'm new to the forum, but not to Crohn's. I don't know how old you are, but I think that it can just take a long time to get a Crohn's diagnosis, so maybe your doctors just need some more evidence before they finally make the diagnosis. I have found that moving around, and changing doctors frequently, can particularly cause the process to take longer and be more frustrating (mainly because you have to explain everything over and over again, and each new doctor wants to take a look for him/herself).

Mine took about 10 years to finally diagnose, even though the first instance was more "moderate" (hospitalized me for a week), all recurrences have been more "mild" - with things like what others have described on here (polyps or small ulcers, mild inflammation at the terminal ileum a couple of times, etc etc). Nothing "severe" - but that doesn't mean that your symptoms aren't tough to deal with.

For me, the difficulty of "mild" Crohn's is that you can't predict how you're going to feel, and you can't tell whether if you're feeling crappy it's Crohn's-related or not. There's a lot of guessing going on, and that messes with you psychologically. I think that a definite diagnosis will help you, though, to come to terms with things somewhat, so I hope that you are able to get the answers you're looking for from this doctor. Best of luck!

-Sarah

@ MaineKitty

Thank you for your reply.

I do agree changing doctors has been one of my big issues as well. I have seen the doctor yesterday in my home town and plan on staying with him again, and as for re-doing tests - I have another colonoscopy scheduled for September. I do plan on staying with this doctor for sometime. I did give the other doctor a fair shot almost 2 years with him, but did not see any improvements and the 3 hour drive to get to him was hectic exspecially in the winter, and this doctor will take me immediately If I am in in a flare, and his secretaries are wonderful. So I think that will help me out alot.
I guess I will have to cross my fingers and hope for the best.

This forum is great.

Thank you all. :ghug:

I have mild crohns. Infact I was diagnosed the very first time I had a bowel problem and foryunately, I am in remission ever since I was diagnosed...the only thing that bothers me is gastritis and the side effects of it. I was on pentasa initially but I have tried being off the medicicnes and its same for me..not problem really. I am currently controlling it by vegetarian diet and regular yoga and pranayam...and few ayurvedic medicines, which seem to help a lot. I really hope to keep it like that for the rest of my life.

@mark74, hope you'll read this.

You said your colonoscopy was negative? were your biopsies negative as well? I had a "normal" colonoscopy last week and my biopsies came back normal. But I just can't shake the feeling its Crohn's. Bad diarrhea, horrible nausea. no appetite, can only eat in very small amounts without feeling like death. EXHAUSTED. And have lost 15 pounds in a month. So you had the pill endo and that found it?

Daunting said:

I know this might sound like a stupid question.

But is there anyone out there with MILD crohns who has it under control with medications or without meds and who has been in remission for quite some time.
I've seen three specialist so far, first saying it was mild crohns other two said it wasnt crohns but IBS, family practioner decided to send me back to the first specialist, see him again in August. Because my family doctor feels that it maybe early crohns since no IBS medications has worked and I've tried them all, only time i feel good is when I'm on a low dose of steroids.

Just questioning if there is hope for someone with MILd Crohns.

Thank you.

Click to expand...

Your story sounds somewhat similar to mine. I've also seen 3 different GI specialists. The first diagnosed me with mild Crohn's and started me on Lialda, which did nothing except exacerbate the symptoms. My biopsy results showed inflammation throughout the colon, crypts, and I had an inflammatory polyp, but there were no long-term inflammatory changes. Nothing about the biopsy screamed "Crohn's". My blood results and CT scan were normal. But based on my history and symptoms, the Crohn's was diagnosed.

I switched doctors because I was unhappy with the first GI doc and the second one said that it was not Crohn's. He suspected lymphocytic colitis. After doing some research, I came to the conclusion that the second doctor was pulling this diagnosis out of his butt. There were no lymphocytes spotted on the biopsy (part of the diagnosis for lymphocytic colitis). So, I'm currently seeing a third GI doc. He is taking his time arriving at a diagnosis. He hasn't ruled Crohn's out because some of the extra-intestinal symptoms that I have are congruent with Crohn's. He wants to repeat the colonoscopy, which I'm not excited about.

My intuition tells me that I do have Crohn's, probably just a mild form caught very early. I found the Specific Carbohydrate Diet and GAPS very early after my diagnosis, and the diet change has helped my symptoms tremendously. The only medication I'm taking right now is low dose naltrexone, although I do take a lot of supplements. My GI symptoms are under control, although I am having some issues with joint pain and fatigue.

I dare to consider my Crohn's "mild", Dx of CD pancolitis 2 yrs ago (significant D and bleeding)followed by bad iritis (2nd bout of iritis ) Symptoms originated mildly 5-7 years earlier.
I'm 58, no surgery; I officially (and obsessionally) take 3gm sulphasalazine daily. Initial course of oral prednisone,40mg, reducing. Now nil.
Unofficially, I steer clear of too many salad type veges and oranges, take Ca, Mg, fish oil and cranberry extract (early presentation was a typical Reiter's Synd), and I apply daily topical steroid cream to R side of abd, plus to SI /Costcochondral/ankle joints, with added voltaren gel to the same areas (except abdomen) A variation on a technique I learnt from a sports medicine dr years ago.

Result? I maintain a full time workload, my abdomen is largely unremarkable (go 1-2/day, occasionally a bit loose), occasional mild gassy twinges, BMI is STILL 26-27, my SI joints wake me at 4am daily when the bedtime simple analgesics wear off, the Costcochondral joints give a bit of curry every 7-10days, my vision and bone density haven't deteriorated.
I had a brief time on 6MP, which I instinctively felt was hitting an ant with a sledge hammer in my case (was ok on daily 25mg, awaiting enzyme results; felt miserable when it increased to 50). New GI switched me to sulphasalazine 2 yrs ago
Rpt colonoscopy 2months ago ok.

Fingers crossed, and so far so good..
I really do wonder at the nature of Crohn's, tho - reading the stories on the forum makes me think Prof Borody is onto something when he says CD is an umbrella diagnostic term for a variety of disease conditions


HD

PS x2
- I think this is a VERY important area of CD of which to gain an understanding
- I think the key to managing this end of the CD spectrum is to be alert to any minor symptoms/changes, and act EARLY before something more problematic evolves


HD

Hmmm this may be the section of the forum i have been looking for!

I would classify my crohns as mild as well, i dont have any pain, my only real problems are well my bowel movements just are not right....and there is a mucous substance in them most of the time.....but other than that i dont get pain, i find i can eat most things....i dont get acid reflux or stomach cramps from really any foods, and well as far as eating and bowel movements are concerned same thing i can eat whatever i want everytime i hit the bathroom its always the same lol

just wondering if anyone has any suggestions on how to control this without prescription meds if possible? any drug store meds that might help? or natural ideas? im really open to hearing any suggestions that anyone might have

poopmachine said:

Hmmm this may be the section of the forum i have been looking for!

I would classify my crohns as mild as well, i dont have any pain, my only real problems are well my bowel movements just are not right....and there is a mucous substance in them most of the time.....but other than that i dont get pain, i find i can eat most things....i dont get acid reflux or stomach cramps from really any foods, and well as far as eating and bowel movements are concerned same thing i can eat whatever i want everytime i hit the bathroom its always the same lol

just wondering if anyone has any suggestions on how to control this without prescription meds if possible? any drug store meds that might help? or natural ideas? im really open to hearing any suggestions that anyone might have

Click to expand...

Dietary changes have drastically changed my life. Check out the specific carbohydrate diet and the GAPS diet. I also take a lot of supplements that help keep inflammation under control. Good luck.

I had 'mild' crohns when first diagnosed years ago, though didn't understand how going to the loo 10 times a day would be mild. Been moderate to severe last few years.