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Diagnosed with crohns

Hi All,

I have been diagnosed with mild crohns in 2018. I occasionally had stomach cramps, once or twice a year, and I used to take gas-x or prilosec, and that had resolved the issue.

Recently, I got covid in April 22, since then, I had 2 stomach flare-ups and a rectal abscess recently. So, I have decided to start medication for crohns. I'm taking lot of medication for Antibiotics, vitamin deficiency, budesonide for crohns, and Isoniazid for latent tb daily. This is very depressing.

I'm meeting new GI doctor this week, and he may suggest taking immuno suppressant tablets. I'm hoping there are alternate solutions without complicating even further.
Doctor also prescribed iron injections. It seems I have a leaky gut. My calprotectin level is 800, when I got rectal abscess.

I'm here looking for support and solutions to address my illness.
 
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Scipio

Well-known member
Location
San Diego
Sorry to hear that your disease has worsened. You need to get on something that will stop your Crohn's progression and keep you in remission. You should not be unduly concerned with taking immunosuppressant medications since those will likely be needed in some form or other to control your disease. In fact you are already on budesonide which is a fairly strong immunosuppressant. But budesonide is a short-term solution to to help get you into remission. Steroids such as budesonide should not be taken long term - the side effects are too great,. You already have an abscess which indicates damage to the bowel. The damage is cumulative over time, often eventually requiring surgery to remove a length of gut that is too scarred and damaged to recover. Thus the need to get into remission and stay there for as much as possible - to stop the buildup of damage.

I say go to the new GI with an open mind a determination to get your disease under control. The biggest health risk to us Crohn's patients is not the side effects of the medications. The biggest risk we face is uncontrolled or poorly controlled Crohn's disease.
 
Sorry to hear that your disease has worsened. You need to get on something that will stop your Crohn's progression and keep you in remission. You should not be unduly concerned with taking immunosuppressant medications since those will likely be needed in some form or other to control your disease. In fact you are already on budesonide which is a fairly strong immunosuppressant. But budesonide is a short-term solution to to help get you into remission. Steroids such as budesonide should not be taken long term - the side effects are too great,. You already have an abscess which indicates damage to the bowel. The damage is cumulative over time, often eventually requiring surgery to remove a length of gut that is too scarred and damaged to recover. Thus the need to get into remission and stay there for as much as possible - to stop the buildup of damage.

I say go to the new GI with an open mind a determination to get your disease under control. The biggest health risk to us Crohn's patients is not the side effects of the medications. The biggest risk we face is uncontrolled or poorly controlled Crohn's disease.
Thank you for responding to underline the importance of managing Crohn's. I understand that I may need to use immunosuppressants.

It seems there are various medications to use, is there a widely recommended medication that can control Crohn's? Is there a thread to follow on the same?

And, how do we know that we are in remission, other than observing the symptoms? Is it based on calprotectin levels?

I'm currently bloating and burping, weight loss, vitamin deficiency and Anemic.

What kind of diet is recommended or is it based on individual reaction's to the specific food?
 

my little penguin

Moderator
Staff member
Crohns is treated by three classes of drugs
5-ASA ‘s (Pentasa etc..)
These are the least effective and lowest risk
They act like an aspirin crème that’s treats the top layer of the intestine so while good for ulcerative colitis -not a recommended option for crohns
Crohns inflamed the entire thickness of the intestine not just the top layer

next level is immunosuppressants
Methotrexate
Imuran/6-mp/aza
These work for some people
Slightly More effective than 5ASA’s but slightly higher risk
methotrexate takes 12 weeks to be effective
6-mp takes 12 weeks as well
Lots of bloodwork at first for 6-mp
Imuran/6-mp/aza all have a higher risk of lymphoma so are not used as much in kids

Highest level is biologics
Remicade -takes 6 weeks to be effective
Highest success rate for crohns /abscesses
Infusion at home or hospital every 6-8 weeks

Humira takes 12 weeks
Anti tnf as well
Self injection

simponi (anti tnf )

entivyio is gut specific infusion but takes up to 12 months to be effective -typical is 6 months

Stelara is an injection iL-12/23
Takes up to 8 months to be effective
Some feel better sooner.

Lowest infection rate


Then there is rinvoc
New -once a day pill
Infection tends to be a risk as well
Used only when above fails

my child was dx 7 with mild crohns but tons of extra intestinal manifestations including moderate juvenile arthritis
So he has taken almost all of the meds above at one time or another
He is now 18 and takes stelara and methotrexate
He has been on Stelara for more than 5 years with methotrexate
No issues
 

Scipio

Well-known member
Location
San Diego
And, how do we know that we are in remission, other than observing the symptoms? Is it based on calprotectin levels?

What kind of diet is recommended or is it based on individual reaction's to the specific food?
Remission in general means being free of disease or the disease is so low and quiet that your condition is pretty much the same as having no disease. There are several types or levels of remission depending on how the remission is assessed.

1. Clinical Remission - this is remission based on symptoms. If your symptoms of Crohn's have been abolished or reduced to a very low level, you are said to be in "clinical remission." This is what most patients are interested in achieving - to feel normal and healthy again.

2. Endoscopic Remission - Also called "mucosal healing." This is where there is no visible sign of ulcers or inflammation in the gut upon colonoscopy.. Your bowel looks normal, pink, and healthy. This is what most GIs are trying to achieve. Clinical remission and endoscopic remission do not always align. You could feel great again (especially sometimes after first starting steroids), but the doctor may still see a lot of trouble during colonoscopy. Thus the GI knows to keep adjusting the medication to find the right long-term solution even though the patient feels pretty good right now. And vice versa too. Your gut can sometimes look fine after treatment, but some of the symptoms have continued to linger - frustrating both patient and doctor.

3. Histologic Remission - This is the highest or strictest form of remission and the hardest to achieve. It means that not only are you in endoscopic remission but also the tissue specimens that were collected during the colonoscopy show no signs of inflammation when examined by a pathologist under a microscope. This is probably the closest to a true total remission.

4. Chemical Remission - This term isn't used all that often. It means that blood or stool inflammation markers such as CRP or fecal calprotectin have dropped to normal levels. It's not usually used as a stand-alone definition of remission but is more of an adjunct to the other forms of remission - sort of added proof that, for example, the endoscopic remission is looking pretty good because the markers are low. Or maybe the clinical remission might be coming to an end because the markers are starting to rise. Assessing this can be a handy way to routinely monitor the disease in between colonoscopies - just run a simple blood or stool test instead of having to do another colonoscopy every time.

In my own case I have for years been in remissions #1 and #4 but not quite in #2 or #3. I have basically no symptoms and and normal lab test results, and colonoscopy looks great for the entire large bowel, but the ileum of the small bowel still shows a little redness suggesting residual inflammation (no ulcers). And this low level inflammation has been confirmed by the histologic pathology reports. It's been this way for 5 years now - ever since I went on Stelara, and if it doesn't get any worse, I'm fine with it. My life feels normal enough that I would be happy to go the distance with this low level of disease.

One important note is that none of these forms of remission constitutes a cure. Unfortunately, there currently is no cure for Crohn's disease. So it's perfectly possible for even the most complete and stable of remissions to come to an end and the patient suffer a flare.

As for your diet question. you hit it right when you said it's "based on individual reaction's to the specific food." In my case I haven't really seen where diet helps or hurts my disease much at all. For others it can be crucial - with nasty trigger food that can knock them out of remission and into a flare. And the trigger foods vary quite a bit from person to person.

One exception to what I just said about diet is EEN - a form a treatment where the patient eats only specialized formula and no solid food. This is useful for inducing remission, but is very hard to sustain long term. It is primarily used in children, since it is much easier to strictly control a small child's diet than it is the diet of a teenager or adult.
 
Last edited:
Crohns is treated by three classes of drugs
5-ASA ‘s (Pentasa etc..)
These are the least effective and lowest risk
They act like an aspirin crème that’s treats the top layer of the intestine so while good for ulcerative colitis -not a recommended option for crohns
Crohns inflamed the entire thickness of the intestine not just the top layer

next level is immunosuppressants
Methotrexate
Imuran/6-mp/aza
These work for some people
Slightly More effective than 5ASA’s but slightly higher risk
methotrexate takes 12 weeks to be effective
6-mp takes 12 weeks as well
Lots of bloodwork at first for 6-mp
Imuran/6-mp/aza all have a higher risk of lymphoma so are not used as much in kids

Highest level is biologics
Remicade -takes 6 weeks to be effective
Highest success rate for crohns /abscesses
Infusion at home or hospital every 6-8 weeks

Humira takes 12 weeks
Anti tnf as well
Self injection

simponi (anti tnf )

entivyio is gut specific infusion but takes up to 12 months to be effective -typical is 6 months

Stelara is an injection iL-12/23
Takes up to 8 months to be effective
Some feel better sooner.

Lowest infection rate


Then there is rinvoc
New -once a day pill
Infection tends to be a risk as well
Used only when above fails

my child was dx 7 with mild crohns but tons of extra intestinal manifestations including moderate juvenile arthritis
So he has taken almost all of the meds above at one time or another
He is now 18 and takes stelara and methotrexate
He has been on Stelara for more than 5 years with methotrexate
No issues
Thank you for providing detailed medication information, appreciate it.
I met gi doctor and he said he will put me on remicade and methotrexate, if I understand correctly.

I hope and pray that I do not have any side effects and the medicine works for me.
 
Remission in general means being free of disease or the disease is so low and quiet that your condition is pretty much the same as having no disease. There are several types or levels of remission depending on how the remission is assessed.

1. Clinical Remission - this is remission based on symptoms. If your symptoms of Crohn's have been abolished or reduced to a very low level, you are said to be in "clinical remission." This is what most patients are interested in achieving - to feel normal and healthy again.

2. Endoscopic Remission - Also called "mucosal healing." This is where there is no visible sign of ulcers or inflammation in the gut upon colonoscopy.. Your bowel looks normal, pink, and healthy. This is what most GIs are trying to achieve. Clinical remission and endoscopic remission do not always align. You could feel great again (especially sometimes after first starting steroids), but the doctor may still see a lot of trouble during colonoscopy. Thus the GI knows to keep adjusting the medication to find the right long-term solution even though the patient feels pretty good right now. And vice versa too. Your gut can sometimes look fine after treatment, but the some of the symptoms have continued to linger - frustrating both patient and doctor.

3. Histologic Remission - This is the highest or strictest form of remission and the hardest to achieve. It means that not only are you in endoscopic remission but also the tissue specimens that were collected during the colonoscopy show no signs of inflammation when examined by a pathologist under a microscope. This is probably the closest to a true total remission.

4. Chemical Remission - This term isn't used all that often. It means that blood or stool inflammation markers such as CRP or fecal calprotectin have dropped to normal levels. It's not usually used as a stand-alone definition of remission but is more of an adjunct to the other forms of remission - sort of added proof that, for example, the endoscopic remission is looking pretty good because the markers are low. Or maybe the clinical remission might be coming to an end because the markers are starting to rise. Assessing this can be a handy way to routinely monitor the disease in between colonoscopies - just run a simple blood or stool test instead of having to do another colonoscopy every time.

In my own case I have for years been in remissions #1 and #4 but not quite in #2 or #3. I have basically no symptoms and and normal lab test results, and colonoscopy looks great for the entire large bowel, but the ileum of the small bowel still shows a little redness suggesting residual inflammation (no ulcers). And this low level inflammation has been confirmed by the histologic pathology reports. It's been this way for 5 years now - ever since I went on Stelara, and if it doesn't get any worse, I'm fine with it. My life feels normal enough that I would be happy to go the distance with this low level of disease.

One important note is that none of these forms of remission constitutes a cure. Unfortunately, there currently is no cure for Crohn's disease. So it's perfectly possible for even the most complete and stable of remissions to come to an end and the patient suffer a flare.

As for your diet question. you hit it right when you said it's "based on individual reaction's to the specific food." In my case I haven't really seen where diet helps or hurts my disease much at all. For others it can be crucial - with nasty trigger food that can knock them out of remission and into a flare. And the trigger foods vary quite a bit from person to person.

One exception to what I just said about diet is EEN - a form a treatment where the patient eats only specialized formula and no solid food. This is useful for inducing remission, but is very hard to sustain long term. It is primarily used in children, since it is much easier to strictly control a small child's diet than it is the diet of a teenager or adult.
Thank you once again for such a detailed explanation. Doctor said the same about the diet and remission.
And I'm so happy for you that you are in remission.
I hope to respond to the medication sooner than later.

I met the gi doctor today and he said he will put me on remicade and methotrexate. Please let me know if you have any information on these medications.

Thank you
 

Scipio

Well-known member
Location
San Diego
.
I met the gi doctor today and he said he will put me on remicade and methotrexate. Please let me know if you have any information on these medications.
Remicade plus methotrexate is a pretty good place to start. Remicade was the first biologic approved for Crohn's treatment, and it remains one of the most effective. It's been on the market for about 20 years and most GIs are skilled at using it. Remicade is an antibody that binds and inactivates a protein called TNF (tumor necrosis factor). TNF serves to stimulate and activate certain white blood cells in your immune system. So the effect of this drug is to partially tamp down your overly-active immune system to reduce or stop the damage your immune system is doing to your gut.

The trick in prescribing Remicade or other immunosuppressive drugs is to knock the immune system down enough to put you into Crohn's remission but not so much as to leave you vulnerable to a lot of infections or cancer. And as I said, docs and the drug companies have gotten pretty good at this over the years such that all the scary side effect warnings you read about of increased risk of infection and cancer seldom actually happen. These side effects are a possibility, but they are pretty rare.

Methotrexate is also an immunosuppressive drug, but it's milder than the Remicade. Remicade will be doing the heavy lifting in getting you into remission. The role of the methotrexate is mostly to reduce the risk that you will inactivate the Remicade by making antibodies that bind with the drug. Making these antibodies can occur because Remicade is a large and complex protein, part of which was originally developed in mice. Most of the protein is human in origin, but some of the mouse portion still remains. And if your immune system is exposed to enough of this mouse protein it will recognize it as foreign and attack it as an invader. The methotrexate tamps down this tendency and makes it more likely that you will be able to stay on Remicade for a long time without the drug losing its effectiveness.

Methotrexate is a chemically modified form of the vitamin folic acid, which several enzymes in the body rely on to function properly. In addition to its beneficial effects, methotrexate can also interfere with those enzymes causing unwanted side effects. Thus docs usually recommend that you take a folate vitamin tablet along with the methotrexate to keep those enzymes working properly and reduce the risk of methotrexate side effects.

Good luck with your new therapy!
 
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It makes sense to me. Thank you so much for providing such great insights into medication, causes and side effects. Hope everything goes as planned. Thank you once again.
 
Hello!

It's been a while I updated my journey, I want to share my journey so far and seek feedback as well.

I have had 4 doses of remicade so far, I can feel that the medicine is working. I have gained 60% of the weight that I lost during the last year and my vitamin levels are looking better. I'm feeling a lot better too.
But, my Iron is still low at Ferritin ~5, even after three iron infusions. I went for blood test 3 months after I stopped infusions.

My GI doc was not sure why the Iron level didn't catch up along with others. He asked me to go Hematologist, and the hematologist thinks my Iron levels were not completely caught up even during Iron infusion. So, the hematologist suggested a 5x dose of Iron infusion and hope to understand the reasons for loss in the meanwhile.

My GI doc is suggesting capsule endoscopy. He also suggested to take Montr Chrons test by Prometheus lab.

Both the above tests are expensive with my insurance.

Irrespective, I'm wondering if Montr Chron's test is sufficient to look for mucosal healing. Wouldn't it tell if I have active disease anywhere in the stomach?
Why would I need capsule endoscopy, mainly when we can't completely rely on this test alone?

Please share your insights. I tried to ask my GI, but I didn't get proper answer.

Thanks,
Naveen
 

Scipio

Well-known member
Location
San Diego
The Monitr test consists of measuring a panel of proteins that variously have to do with the immune system, inflammation, and tissue regeneration that are combined through complex mathematics to produce a single numerical score that can in many patients mirror what is going on in the gut as assessed by colonoscopy. So it is, in effect, a blood test that acts as a surrogate for endoscopic remission or progression. Thus, it potentially has the ability to assess the disease in areas that cannot be readily visualized or are otherwise missed by colonoscopy. Or perhaps it can be an early warning to changes in the gut that are about to become visually more apparent. The test has been validated thorough published research but is not FDA approved, which is one reason why your insurance may not want to pay for it.

Capsule camera endoscopy is a way to visualize the entire gut including the small bowel. It's not perfect. No test or procedure is, but it can provide valuable information. My own Crohn's was first diagnosed thanks to seeing small bowel ulcers via capsule camera endoscopy.
 
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Okay, thank you for the information. So, if I understand correctly, capsule endoscopy is for diagnosis and Monitr test is assess the improvement or remission.

Thank you.
 
The Monitr test consists of measuring a panel of proteins that variously have to do with the immune system, inflammation, and tissue regeneration that are combined through complex mathematics to produce a single numerical score that can in many patients mirror what is going on in the gut as assessed by colonoscopy. So it is, in effect, a blood test that acts as a surrogate for endoscopic remission or progression. Thus, it potentially has the ability to assess the disease in areas that cannot be readily visualized or are otherwise missed by colonoscopy. Or perhaps it can be an early warning to changes in the gut that are about to become visually more apparent. The test has been validated thorough published research but is not FDA approved, which is one reason why your insurance may not want to pay for it.

Capsule camera endoscopy is a way to visualize the entire gut including the small bowel. It's not perfect. No test or procedure it, but it can provide valuable information. My own Crohn's was first diagnosed thanks to seeing small bowel ulcers via capsule camera endoscopy.
@Scipio How often do you use the capsule camera endoscopy for monitoring?
 
I have never used it for monitoring. It was used just once for diagnosis. I'm in remission, so for monitoring it's been blood work every 4 to 6 months and a regular colonoscopy every two years.
How come? I thought the pill cam is the only way we can "see" the small bowel?
 

Scipio

Well-known member
Location
San Diego
How come? I thought the pill cam is the only way we can "see" the small bowel?
Because I'm in stable remission so there really isn't a need for such close monitoring. If I started flaring and the doc couldn't see anything by routine colonoscopy, I suspect he might consider another capsule camera endoscopy. But fortunately that hasn't been necessary.

Capsule camera endoscopy is a rather elaborate (and I presume expensive) procedure for routine repeated use. I suspect that if the doc wanted to assess the small bowel repeatedly, he would probably try looking for bowel thickening or other signs of inflammation via MRE before resorting to capsule camera endoscopy.
 
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