Levels of Severity of Crohn's
- Thread starter lisadc1
- Start date
Help Support Crohn's Disease Forum:
i was told i have mild Crohn's.
i didn't have diarrhea or need steroids for almost four years after that.
although now (four years three months) 2654mg prednisone and a four day hospital stay later, i wouldn't consider it mild anymore, maybe moderate.
i didn't have diarrhea or need steroids for almost four years after that.
although now (four years three months) 2654mg prednisone and a four day hospital stay later, i wouldn't consider it mild anymore, maybe moderate.
theOcean
Moderator
We have a great wiki article explaining different forms of remission, but people are generally referring to complete remission when they talk about it here. 
I have severe fistulizing Crohn's, which is a very aggressive form of it. I guess it depends on how it manifests for a person, where it manifests, and how severely they're compromised by it.
I have severe fistulizing Crohn's, which is a very aggressive form of it. I guess it depends on how it manifests for a person, where it manifests, and how severely they're compromised by it.
I could keep on saying I am in remission since I hardly have any symptoms and no pain either. Bloodlevels are right, and any other tests seems to be normal. So according to that wiki I am in clinical and biochemical remission.
Only thing is that my colonoscopy and CT revealed severe inflammation, swelling and strictures in colon. So I am not in remission. In fact I was put back on biologics (first Remi, then Humira). And that made me to climb higher in severity scale. My Crohns is more severe than the moderate I had before putting back on biologics. I thought I was doing fine with Aza.
Different levels can be explained in different ways. By the symptoms or by the response to medication. Mild to moderates are treated with salicylates and antibiotics, moderate to severe with steroids and immunomodulators, and after that biologics. Most severe cases require hospitalization because of their symptoms and lack of response to medication (+other possible problems). If you define by the symptoms you end up in similar categorization by the medicine response so its basically the same, by combining the two you can make it more accurate.
Only thing is that my colonoscopy and CT revealed severe inflammation, swelling and strictures in colon. So I am not in remission. In fact I was put back on biologics (first Remi, then Humira). And that made me to climb higher in severity scale. My Crohns is more severe than the moderate I had before putting back on biologics. I thought I was doing fine with Aza.
Different levels can be explained in different ways. By the symptoms or by the response to medication. Mild to moderates are treated with salicylates and antibiotics, moderate to severe with steroids and immunomodulators, and after that biologics. Most severe cases require hospitalization because of their symptoms and lack of response to medication (+other possible problems). If you define by the symptoms you end up in similar categorization by the medicine response so its basically the same, by combining the two you can make it more accurate.
Thank you, Juuh! Crohn's is so hard to understand. Especially like your case when you say you hardly have symptoms and no pain, yet your colonoscopy & CT reveal otherwise! Still waiting on insurance approval - feedback to begin Remicade and I worry if I am really "severe" enough for it. I have the intestinal pain and frequent D/BM, no matter what I eat. I do know certain foods are not friendly to my system and fatigue is my worse symptom. My med list is long and it seems that they help very little, or I assumed I would become symptom free being on so much for over 8 months now. When I looked at the scale, and if I did it correctly, my "number" was 270, so not horrible compared to others. But is it really bad enough for Remicade? Thankfully, I am getting out for summer break - I teach first graders, so I hope I can regain some energy I have lost. So many questions...
And thanks theOcean!!! I had no idea there was a calculator for something like this. It is hard to figure where I am with this thing. I am no where near many of you are with your battles.. Just hard to wrap my mind around this sometimes.
And thanks theOcean!!! I had no idea there was a calculator for something like this. It is hard to figure where I am with this thing. I am no where near many of you are with your battles.. Just hard to wrap my mind around this sometimes.
Last edited:
When I think of levels and starting from the first doctors visit;
I remember having D/BM with lots of pain 6 out of 7 days a week. ( I was misdiagnosed)
After 4 years of that and seeing blood I thought I was moderate. ( I was properly diagnosed)
Now without going into the crappy details; I feel 10 times worse with many more symptoms Like; fatigue, dizzy spells, Etc. The doctor (and this is a third opinion) says they are flare ups
I know I am not in remission. But what level am I???
I am still confused after 16 years You’d think I’d have this figured out by now.
Not sure the doctors even know…
I remember having D/BM with lots of pain 6 out of 7 days a week. ( I was misdiagnosed)
After 4 years of that and seeing blood I thought I was moderate. ( I was properly diagnosed)
Now without going into the crappy details; I feel 10 times worse with many more symptoms Like; fatigue, dizzy spells, Etc. The doctor (and this is a third opinion) says they are flare ups
I know I am not in remission. But what level am I???
I am still confused after 16 years You’d think I’d have this figured out by now.
Not sure the doctors even know…
- Joined
- Apr 10, 2014
- Messages
- 48
I'd probably say if I have Crohn's, it's moderate.. I had a period of over a year with 10-20 BMs a day with diarrhea, now I'm at 2-3 solid ones per day but pain when going and my stomach pain is still full force, occasionally blood in stool. I also had a period of joint pain at times and have recently been vomiting/nauseous.
DustyKat
Super Moderator
- Joined
- May 8, 2010
- Messages
- 23,973
http://www.crohnsandme.com/crohns-information/symptoms-of-cd.aspx
This table nicely sums it up. Since Crohn’s is characterised by periods of flare and remission many people have the potential to move through one or all of these stages a number of times.
Regardless of symptoms, or length of time symptoms are present, once you develop a complication of Crohn’s…obstruction, fistula, abscess, perforation…you are automatically deemed to be in the severe stage. My son, at diagnosis, had his disease rated at mild to very mild but in less than three weeks he developed complications so was then severe.
My kids had severe fistulising disease so for them surgery was the only treatment option but has been very successful with them being in remission for 8 years and 3.5 respectively.
Dusty. xxx
I was told i had severe Crohn's when i was admitted to hospital because of it. By that point i was severely dehydrated had very low blood pressure and was on a constant IV drip for a week and needed two blood transfusions. 6 months on I probably have moderate Crohn's - was on steroids for 3 months and now on Azathioprine.
The above two paragraphs (i only quoted most of the second.) are contradictions. can you go from severe to mild/moderate or not?
theOcean
Moderator
I guess it would depend on the complication. If you have fistulizing Crohn's, you will always have fistulizing Crohn's and your case will always be deemed severe. I'm not as familiar with the other complications.
I had fistula before I was diagnosed, and surgery for that. Couple of years later, after diagnosed with Crohns I have not had them (knock on wood), so I am not diagnosed with fistulizing Crohn´s but stricturing. This disease is unpredictable so I am not totally sure if you really are stuck with the type of disease you are diagnosed with or can it change like mine did.
I never really think about it. I have long periods of remission but have had six or seven surgeries. I have been told mine is a complicated case, but I don't know what that means. I saw a young girl die of complications when I was first diagnosed, I always keep in mind at least my illness isn't as severe as hers.
Daisy123, what meds do you take? What kinds of surgeries have you had? Love her heart! That is such a reminder that we could be much worse than we are. A former student lost her mother to Crohns two years ago because f her potassium levels from what I understand. I had a resection in 2000, 13 years before I was diagnosed and battled all these issues alone many years without a GI, way before I heard of crohns. I stay absolutely fatigued, and my intestines stay in a rumbled mess, even with everything I take. I suppose I should limit the kinds of foods I eat, but it really doesn't matter what I eat, it all goes straight through. When I was first going to the GI last fall I was having 10 -15 BM a day and stayed dehydrated. Multiple er visits to get rehydrated. Visible bleeding - only one episode for 3 1/2 weeks early Spring. But now the D and the fatigue, and general feeling of unhealthiness seems to have taken over. I cannot seem to break the cycle.
My med list:
Lialda 2x daily
Entocort 9mg (8 months)
Bentyl prn
Lomitil prn
Potassium 10 Meq x2
Folic Acid
Canasa Suppositories prn
Aso take: Toprol, Lisinopril, Hydrochlorothiazide, Premarin, and Baclofen (for back problems)
Been on:
Pentasa - did nothing
Hydrocortisone enemas
Potassium IV
My med list:
Lialda 2x daily
Entocort 9mg (8 months)
Bentyl prn
Lomitil prn
Potassium 10 Meq x2
Folic Acid
Canasa Suppositories prn
Aso take: Toprol, Lisinopril, Hydrochlorothiazide, Premarin, and Baclofen (for back problems)
Been on:
Pentasa - did nothing
Hydrocortisone enemas
Potassium IV
lisadc1; said
" I stay absolutely fatigued, and my intestines stay in a rumbled mess, even with everything I take. I suppose I should limit the kinds of foods I eat, but it really doesn't matter what I eat, it all goes straight through. When I was first going to the GI last fall I was having 10 -15 BM a day and stayed dehydrated. Multiple er visits to get rehydrated. Visible bleeding - only one episode for 3 1/2 weeks early Spring. But now the D and the fatigue, and general feeling of unhealthiness seems to have taken over. I cannot seem to break the cycle." [/I]
________________________________________________________________
Sounds like we are on the same roller coaster. I don't know what to do about the fatigue and dizzy spells; It is scary when I am at work....
" I stay absolutely fatigued, and my intestines stay in a rumbled mess, even with everything I take. I suppose I should limit the kinds of foods I eat, but it really doesn't matter what I eat, it all goes straight through. When I was first going to the GI last fall I was having 10 -15 BM a day and stayed dehydrated. Multiple er visits to get rehydrated. Visible bleeding - only one episode for 3 1/2 weeks early Spring. But now the D and the fatigue, and general feeling of unhealthiness seems to have taken over. I cannot seem to break the cycle." [/I]
________________________________________________________________
Sounds like we are on the same roller coaster. I don't know what to do about the fatigue and dizzy spells; It is scary when I am at work....
Lisadc1, I am on too many meds to list, but for Crohns Aziathropine (Imuran) and Pentsa. Codeine for diarrhoea. Surgeries: 5 resections, 1 fistula op, 1 sphincter repair, 1 temporary ileostomy, 1 reversal. 4 stricture dilations. Last resection September 2011.
- Joined
- Mar 29, 2013
- Messages
- 431
My crohns is mild. Only on one medication (pentasa). Two attacks which were five years apart with occasional obstruction in between. The 2nd attack was severe and required a resection, in remission 32 months and counting since then. No weight loss, diarrhea, nausea, fever, blood, etc during the remissions and regular solid BMs. I consider myself lucky compared to many members here.
Similar threads
