Crohn's Disease without symptoms
Posted , 16 users are following.
Hi all,
I was diagnosed with Crohn's at the beginning of the year. I'm 41 and got a colonoscopy because it was required becuase my father died of colon cancer. I went in with a great attitude and woke up to bad news. The doctor immediately prescribed meds; a steroid and later a chemo therapy drug. My colonoscopy, and 2 weeks later, my ct scanned, both revealed an inflammed ileum. That's all. No strictue, fistulas or abscesses. Outside of that, I have zero symptoms. None. Not one. I'm regular, never vomit, no joint pains, no low-grade fever, no fatigue and a great appetite.
So, because I feel no pain, I decided to not take the meds, for now. Especially after reading the side effects. Why would I give my self pains and weird feelings when I have none? To me, that's a slippery slope to days filled w/pill poppin'. A GI, who did not examine me, told me that since I got my colonoscopy during my monthly and had been on Ibuprofen for days, I could have gotten a bad read. NSAIDS usage can mimic Crohn's. It has happened to him. He advised to stay off NSAIDS for 5-6 months and retest. My question is, is it possible to have this disease and not have any signs? Have any of you experienced this? I never even had signs as a kid or teen. It's all so odd. I feel like I have the mildest case ever or I'm in denial. I don't know what to think and the waiting to recheck is killing me mentally.
Help! Any and all feedback will be appreciated.
1 like, 31 replies
craig84609 tia32782
Posted
I don't see how you can have even mild Crohn's disease and be pain and symptom free. When my disease was classified as mild I am in a lot of pain. I bleed and have the runs at times. I lose weight, a lot of weight. I can tell you that when it is mild they can't see it through a scope. The only way is to do biopsies and then send them to a lab for checking. I would hold off on the meds as well, until you know what you are truely dealing with. When my disease was moderate I was so bad I went to the emergency room from work. I was so weak I could hardly walk. CD is a serious disease and can cause a lot of damage. If you were using a lot of NSAID's then it could be that. You may be just fine and if you have no symptoms and you feel well, then really don't worry. I wouldn't. I have had this disease to some degree my entire life and I have always had pain, lots of it despite the doctors who think they know everything, they don't even have a clue as to what I go through with this or others that have it. I would love it if my doctor could experience the pain that I have on a daily basis, even if for only one day. I believe then she will truely understand what it is like to have this disease and just maybe we may get a little sympathy from our doctors. Show me a doctor who has CD and you will see one that understands. I hope that you don't have it and it soundto me like what you have may be drug induced, but follow up to make sure, because it is also a progressive disease, so it gets worse with time. Hang in there.
tia32782 craig84609
Posted
Craig, thank you so much for the advice. I have learned a lot in the last 2 months about this disease, and I sure hope they find a cure. I'm shocked that so many people have bowel issues, but so many more no nothing about the disease. Handing out pill after pill can't be good for anyone's liver and kidneys. There just has to be a better way.
maureen15717 tia32782
Posted
Hi, I am sorry to hear all your doubts about your Crohns diagnoses and also sad to hear about your father. However, both my mother and father suffered from this and various problems associated but, until and if, I started having problems I was never given a colonoscopy. However sadly the symptons started and I did have a colonoscopy etc. and was diagnosed with UC. My younger brother was diagnosed with the same disease years earlier than me. However and very thankfully and touching wood at the moment, I don't seem to suffer as bad as any of my relations did/do. I think that was because my Consultant managed to get my medication right first of all, which was Steriods followed by azathioprine together with Pentasa. 4 years later and I am only taking Pentasa because he got me under control. However , as he said things can change overnight and I have a nurse that I can contact whenever and if she cannot help me then she gets the Consultant to deal with me. I have yearly check ups and this year I have been put on a two yearly check up but with the availability of him or nurse at any time. Believe me, if you have Crohns or UC you will know about it, even if it is mild. If you are not happy with anything you have been told etc, then I would get a 2nd opinion because the sooner you sort it out hopefully the better you will be. Good luck and I hope you get peace of mind very soon.
tia32782 maureen15717
Posted
Maureen, thank you so much. I'm so glad you had a doctor who rocks! So many people that I follow on forum are still i pain despite taking 30-40 pills a day. That's just mind-blowing to me! I hope a cure is in the near future. Regardless, I will get a second opnion. And, either way, no more Iboprofen for me.
kelly58419 tia32782
Posted
Hi tia
I too have inflammation in the same place which does point to crohns but I don't have symptoms either although I did have symptoms in December, bloody diarrhea that lasted a week and nothing since. No stomach cramp or pain and only going to the loo once a day. I don't take any medication. The Dr told me I either have crohns or an infection. That's wat the Colonoscopy results came back with. She said there's no point giving be medication as I have no symptoms. Usually people with crohns go the loo over 4 times a day and have stomach cramps. I do think I have crohns but only because of my symptoms in December. Its a mystery how I feel completely normal and in fact my appetite has increased!
tia32782 kelly58419
Posted
Kelly, thanks for responding. I have never had bloody diarrhea. Oh my gosh, that would scare me to death. I will say this, now, I examine my poo more than I ever have in life. :-D I haven't had any episodes of discomfort or pain, though. I know that I can't have dairy, but millions of people can't, so I've decided not to stress my body with it anymore. That's lactose-intorelance and I know that for sure, but Crohn's seems so far-fetched. When I read my paperwork from the doctor, the lab response says my issue is either medication-induced, an infection or Crohn's but the doctor says Crohn's and threw meds at me as soon as I came out of anesthesia. Funny thing is, when I told him I don't feel sick, he was shocked and then started asking all of these questions. He was also shocked that I can eat everything (except dairy, really). Then he ordered the bloodwork and CT scan. BW was normal, CT scan revealed the same thing as the scope, inflammed ileum. I just can't wait to get a second opinion. Hopefully, it'll be different in a few months. This disease is scary awful.
mary65495 tia32782
Posted
HI Tia..your post is really interesting for me ! I had emergency surgery and part of small and large intestine removed .Lab says "crohns ", GI says no ,"it's damage from NSAIDs ", I had taken them for dental work pain /swelling . Very confusing ,never put on crohns meds. Took a long time to recover from surgery so...you should take gps advice and run with it .I had a dreaded colonoscopy several months later and no sign of Crohns .and have no crohns syntoms .,gut still sensitive though .,lucky you didn't get opp.
nothing wrong with a second opinion though.
All the best.
tia32782 mary65495
Posted
Mary, thanks for responding. I still can't understand how the lad says one thing and the doc says another. My situation is the same. Lab was basically inconclusive. It said I either had an infection, the inflamation was medically induced or Crohn's. Doctor says Crohn's. This disease, ulcerative colitis and irritable bowel syndrome are all so confusing. My friend's daughter has all of the signs of Crohn's but her scopes come back clean.
craig84609 tia32782
Posted
Yea, I will third that. A second opinion never hurts. I have never really been without some level of pain with this disease. In fact I thought it was normal as a young man to have bad cramps before going to the bathroom. It wasn't until I was talking to a friend at the time and he looked at me funny and said I don't have pain or bad cramps before I need to go. I was confused and said really? I thought everyone did. Even when it is classified as mild I have a lot of pain and cramping, now part of the reason is I have IBS with the IBD, but if IBD didn't cause pain, then a lot of people wouldn't get diagnosed. The only sign at that point would be several bouts of the runs in a day and some bleeding. With me and many others that I have talked to it causes a lot of pain.I find Colonoscopies horribly painful. I really have a difficult time with them and my doctors have never understood that, but to me I can't understand why they don't get it. So I am unsure what causes all the pain I feel, but it is bad at times.
tia32782 craig84609
Posted
Craig, I'm sorry you've had such a hard go at it. My colonoscopy was easy. It was drinking the prep that caused me the most issues. That crap is gross! I never pooped so much in my life, and I became raw from wiping! ARGH! Were you put to sleep for your colonoscopy? I was. Best sleep ever and don't remember a thing.
craig84609 tia32782
Posted
Oh yes, but you are not really out. They use a date rape drug that keeps you from remembering the test. I unfortunately did remember everything. It took a couple of hours, but I remembered. You can be yelling in pain during it, but most forget that part. Never again. I don't think I will get enough benefit from it to justify having this again. I have no desire to put myself through that again. It makes sense if you have cancer in your family, but in my case I don't, so I will pass on it.
anna64644 tia32782
Posted
Hi I had an odd pain in 2006 and had various tests, abdomen ultrasound/barium meal/ct/MRI then an endoscopy and colonoscopy. Results were that as they could find nothing else I probably had Crohn's and meds were offered straightaway. As the pain went as soon as it came I decided not to take any but to research it as I had no clue what Crohn's was. I wasn't happy being told it was probably Crohn's so I asked for a second opinion and had another colonoscopy as the first GE admitted he hadn't reached the ileum to be sure. This time I was confirmed with Crohn's in the terminal ileum. I needed B12 and Vit D as I had malabsorption but other than that I felt the same as you, no symptoms not sure I have it. I was good for 4 years then the pain came and went and I understood more about what makes the disease tick. 4 year's ago I had a small bowel resection and have been in remission since, MRI in Jan to check on things revealed nothing so now off my maintenance dose of Imuran and I will be reviewed in 6 months. I guess if your Crohn's isn't active carry on as normal, I used to have regular bloods to check inflammation levels, especially if I had a flare up then treatment was needed. I feel my Crohn's experience has been mild compare to other people's experiences but I would still recommend you be proactive and look out for signs/symptoms/reactions, you know your own body. I was told from the start to avoid dried apricots, sultanas/raisins and seeds/grains/nuts but everyone is different. It is odd being diagnosed with something when you have no symptoms and feel well and I hope you continue to be symptom free, just be aware, good luck
tia32782 anna64644
Posted
Anna, that is great that you're off meds. I so hope it stays that way for you. I really do. I'm doing what you said and paying attention to my body. Funny how being diagnosed with an illness will make you aware of your body. I already knew I was lactose intolerant, but I'd eat dairy anyway and deal with the bloating/diarrhea. I no longer do that. I'm listening and respecting that my body simply doesn't like it. I also keep a food journal now and try to pinpoint if anything is bothering me. So far, nothing does but dairy, but like I said, I've known that since childhood. Most black and Asian people can't digest it. No more ice cream for me, and that's fine. I bet you feel so much better being off drugs. By the way, what did the odd pain you felt feel like? Did it knock you down or were you able to cope? Me, I don't have tummy aches, just mentrual cramps which seem to have gone away since I started eating a plant-based diet.
anna64644 tia32782
Posted
Hi Tia, my first pain was really insignificant really, it was on the upper right side and came and went, it was more odd than painful but it persisted enough for me to think I should see my GP. He sent me for a barrage of tests until I got the diagnosis. The only other symptom I had was occasionally bringing up undigested food which was due to narrowing. Before the op I could eat more or less normally and bland during a flare up. I saw a dietician, kept a food diary but in all honesty there was nothing definite that set off a flare up. I found drinking warm water soothing in a flare up, I tried lactose free for a while and Yakult but I can't say I felt any difference. The pain did increase with each flare up but it was never severe and codeine based painkillers dealt with it until things settled down, usually a couple of days. All the meds I have been on have been fine, only the steroids had the biggest impact so I was happy to stop them, they do a good job with the inflammation but the longer I was on them they affected my hair badly and I got the moon face and was always hungry. I am left with bile salts diarrhoea since the op, an unexpected outcome which has blighted my freedom from Crohn's which is a more debilitating condition. I live on Imodium and no longer take any pleasure in eating out or going on holiday, always worried I will need the loo, I will go a day without eating to get through a concert such is the impact but thems the breaks.
tia32782 anna64644
Posted
Anna, wow Just...wow! I'm so sorry you are dealing with this. I would have thought surgery would've been more helpful than harmful. I swear, I think doctors are a little confused, too. Every resection I hear about ends poorly, but it seems to be the thing to do when meds no longer work. I ptay for a cure.