Extensive Crohns with very mild symptoms

[ebear]

This is my first post :dusty:
Is there anyone out there with extensive crohn's but very few symptoms? I was diagnosed with mild Crohn's 7 years ago and recently had a routine colonoscopy which indicated the disease had significantly advanced. What I am confused about is that I don't have the symptoms other crohn's sufferers describe. I have bouts of moderately painful runny BMs which seem to be more cyclical (hormonal) than from stress or food. But even these are mild and only one per day or two at the most. I seem to go about three weeks with perfect motions and then have a bad one. I do have some fibromyalgia and low energy at times. All of this seems manageable and part of life. I am 45. But since my last colonoscopy results with the nurses asking me how long I had been so sick, I decided to embark on Paleo style diet to try to slow down the progression of the disease at least. Trouble is I think it makes my BMs more loose. I must have I lost about 5 kg in as many weeks even with such a high fat and calorie diet. I generally feel better on the diet, but I would suggest most people even without crohn's would feel the same. I sometimes think the stress of trying to find foods that comply with the diet is not worth the effort. I have a nutritional doctor who is keen for me to try LDN, better than the Gastro who wanted me to take methyltrexate and stop eating tomato skins Wondering how I will know it is working if I don't have severe symptoms.
Any ideas?

 

[DJW]

Hi and welcome.

I've read a number of stories here of people not feeling terribly sick who later find out the extent of the disease. It's one of the most deceptive aspects of crohn's. It gives us a faulse since of security until complications arise.

How to know if treatment is working?
You will need to keep up with your GI visits so he/she can monitor your condition with blood work, scopes, etc. to ensure your treatment is effective. Under treatment can lead to complications.

Sending you my support.

 

[nogutsnoglory]

Unfortunately sometimes the symptoms don't match up with the disease activity. The inflammation can be silent if you will. Like DJW said it's critical we are always minorities via blood work, colonoscopy and imaging to ensure the disease is being kept in check.

 

[Jmrogers4]

Many kids on her present as asymptomatic for the most part. After initial diagnosis really our only clue that things were not good was his lack of growth so a bit harder to judge in an adult as hopefully they have finished growth.
For us even blood labs read in normal range and the only things that give us a good indication is fecal calprotectin and imagining. We've learned to read his blood and determine what is and isn't normal for him. For example a normal ESR for him is 6 where as he gets into the 9-10 range imaging has confirmed massive inflammation. Normal range is stated as 0-15. The only time he has ever reached 15 is when he had a massive MRSA infection.

 

[Brad P]

There is no exact science to it. I've had Crohn's for over 25 years. I was told maybe 10 years ago my entire small bowel was affected, many areas significantly, but I was able to live a somewhat normal life, with 1-2 flareups a year. But then there are others with a short section of bowel affected and it all but kills them.

 

[ebear]

Thank you everyone, I think I have had a lightbulb moment. After joining the forum last night I started to go over all my notes. Historically I have had severe endometriosis from age 18. I always had unusual bowel symptoms around ovulation and menstruation. This cyclical crohns symptoms I am thinking is being confused for something called ileal endometriosis I had a partial hysterectomy three years ago but still with ovaries I am producing estrogen still.
I don't think my gastro dr ever gave me the pathology for the biopsy she took in the last colonoscopy she just said she was SURE it was crohns. Apparently endo in the bowel looks just like crohns.
As I am packing my bags for a white Xmas in Canada (might see you DJW) I am going to try to see my gp today to see if she has those results.
I am a problem solver, I can't rest until I know. I just can't understand why drs don't listen, I have been saying my problems are cyclical for years and they just look at me like I am crazy. Especially when I say it's Ike being sodomised with a sharp knife once a month. ( sorry if that is TMI)

 

[Matrix]

I confirm that the disease can be asymptomatic most of the time,

I'm 36, They found my crohn disease only when I had a bowel perforation (15 years ago). Before the surgery, they thought it was an appendicitis.

They asked me if I had any of the crohn's symptoms, the answer was no, I was feeling alright before the perforation. Then for 6 years I got a lot of issues with bowel obstructions and König's syndrome, probably because of adhesions, it was a nightmare, a few light flareups from Crohn but not much. I was always wondering if I really had a crohn's disease....... until they found a severe stricture.

So another surgery (8 years ago), and then, no medication (I do not tolerate standard immunosuppressive drugs) but I was symptoms free until last year.
"Symptoms free" but I knew the disease wasn't gone (colonoscopy exams showed mild to moderate activity) but .. "hey I'm feeling alright, and they never saw anything in my blood tests" !

and last year, big flareup, after stopping it, they found another stricture, I tried to put off the surgery but in the last months, my weight dropped dangerously, I had a mild inflammation on the stricture and a partial-occlusion all the time. I couldn't get medications because I was waiting for a surgery in the coming months, and then my doctor told me to go to the hospital because I couldn't wait any longer...

So the last month I got my 3rd bowel resection. And now I'm going to start anti-TNF in the next month.

SOooo.... I think, when we have very few symptoms, we are lucky, very lucky, however, like DWJ said, It gives us a false sense of security until complications arise and then it may be too late for medications. In my case I know the disease will be there, most of the time I won't know it until it's too late.

 

[ebear]

Oh no Matrix, sounds terrible. Are you researching the LDN that seems to be working for some sufferers? Meanwhile I am just back from the GP and have my histology from the colonoscopy and it is "consistent with Crohns". So I guess that is it. I will take all advice and keep my health and stress levels under control. I will keep up with the obsessive diet and look towards trying the LDN when I am back from my White Christmas. I will do another colonoscopy in the middle of the year to see if any of those efforts are worthwhile. And yes I do feel lucky to be relatively asymptomatic. Things could be worse, I guess. Thank you for replying to me, it is great to get information and try to understand this condition.

 

[Matrix]

Are you researching the LDN that seems to be working for some sufferers?

No.. I don't know anything about LDN, but I hope it will work for you :thumright:

 

[Muppetgirl]

I have advanced endometriosis and have had several bowel surgeries to treat it. At it's height my symptoms were daily, not just associated with bleeds. I had major problems with D and frequency throughout. We have a least one other lady here who has also had a bowel resection for endo.

It can't do any harm for you to flag it up with your surgeons. However, I would be prepared for the fact that you may sadly have both, and maybe your symptoms are a mix of the two, confusing the issue somewhat. Its sounds like your histology points this way and they are usually very thorough with that stuff. I'm sorry you are in this position. I hope you are able to make sense of it all.

 

[ebear]

Thanks Muppetgirl, I am fast coming to the same conclusion, both endo and crohn's. I would definitely say for me the endo is worse symptomatically. But there is panadeine and hot water bottles and really manageable if I can accept that is what it is. I must not be too far off menopause which might also relieve things. Some fatigue and fibromyalgia goes with both things. Interestingly I was starting to take a lot of anti-inflammatory drugs for the endo pain (eating them like lollies sometimes) and I would say that aggravated the crohn's, there is chronic gastritis on my histology as well. Never ever taking another NSAID.
Very happy doing Paleo diet with some modifications and everyone tells me how well I am looking. It can only help.
I'm going to tune into some forums on LDN (low dose naltrexone), quite amazing information out there, my sisterinlaw is trying it starting this week for her UC. I am lucky I have a nutritional doctor who is supportive of this approach.