Inflamed ileum with fluid buildup

[Pinecone7288]

Hello everyone!

I got diagnosed with Chron's Disease Nov 8. 2021.... so VERY recently.

I just got a CT scan yesterday on my abdomen to see if the abscess I had from the hospital was gone or not. The nurse or health official just accidentally called me first before calling my GI doctor, they thought I was my GI doctor in terms of the phone number & they revealed the test results prematurely to me.

They said I have inflammation of my ileum & that I had fluid buildup. I have a few questions for anyone that can help me understand this:
1.) How can I get this so soon? (could it be diet?)
2.) Does this mean I have to get surgery?
3.) Has anyone else experienced quick inflammation like this after you were first diagnosed?
4.) Is it possible that some of my wine drinking on certain nights and coffee consumption lead to this inflammation? (I've been eating a more healthy diet since leaving the hospital.)
5.) What do you think this means for my body?

Knowing that my GI doctor will address this situation I can trust they will give counsel, but I am in a panic about all of this info from the CT scan. Should I be worried?

 

[JessicaGrace24]

So not sure what was explained to you at the hospital but Crohn's disease is an autoimmune disease that attacks the mucosal lining of your GI tract thus causing an inflammatory response which if left unchecked leads to complications like abscess and fistula. I am assuming from the results that the inflammation and fluid collection found are not necessarily new but lingering from the flare that led to your diagnosis. Were you put on steroids for the inflammation or antibiotics for the abscess? If so are you still on them? Has your doctor mentioned putting you on a maintenance med such as a biologic after finishing steroids to keep the inflammation under control? You need a maintenance med because as you lower the dose of steroids the inflammation can come back right away if not maintained by another med. In other words, steroids are for short term use and biologics for long term. Those would be first steps before going to surgery. Usually you try all the available biologics until you find one that works and only if you fail to respond to any do they go to surgery. Surgery is usually not a first resort so don't panic. It sounds like you are still in flare so alcohol may not be the best right now and coffee either if it is making symptoms such as diarrhea worse or interacting with certain medications you are on BUT they are not the cause of the inflammation. They just may make your symptoms worse. Hopefully your doctor can provide more clarification for you!

 

[Pinecone7288]

I got diagnosed with Chron's Disease Nov 8. 2021.... so VERY recently.

So not sure what was explained to you at the hospital but Crohn's disease is an autoimmune disease that attacks the mucosal lining of your GI tract thus causing an inflammatory response which if left unchecked leads to complications like abscess and fistula. I am assuming from the results that the inflammation and fluid collection found are not necessarily new but lingering from the flare that led to your diagnosis. Were you put on steroids for the inflammation or antibiotics for the abscess? If so are you still on them? Has your doctor mentioned putting you on a maintenance med such as a biologic after finishing steroids to keep the inflammation under control? You need a maintenance med because as you lower the dose of steroids the inflammation can come back right away if not maintained by another med. In other words, steroids are for short term use and biologics for long term. Those would be first steps before going to surgery. Usually you try all the available biologics until you find one that works and only if you fail to respond to any do they go to surgery. Surgery is usually not a first resort so don't panic. It sounds like you are still in flare so alcohol may not be the best right now and coffee either if it is making symptoms such as diarrhea worse or interacting with certain medications you are on BUT they are not the cause of the inflammation. They just may make your symptoms worse. Hopefully your doctor can provide more clarification for you!

I appreciate the reply Jessica! Thank you for your time. I am aware of it being an Autoimmune disease, which I find to be quite scary. I would think they are new though, namely the fluid alone. The inflammation isn't new IMO, I could be wrong though. They had me on steroids (Prednisone) for a few weeks post hospital, they also had me on anti-biotics (I think it was: Ciproflaxin or something like that). Now I am on Pro-biotics, other supplements, etc. As far as a biologic goes for me I am not sure what a Biologic is. (Yes, I can google it, ) but in all seriousness, they put me on Mesalamine (anti-inflammatory slow release pills)

 

[JessicaGrace24]

So the fluid collection usually means infection (ie abscess) which is why I don't think it is necessarily new but probably has not healed and you needed more time on antibiotics. Probiotics would not be a good idea until the infection is gone in my opinion but not sure what your Dr told you. If your Crohn's is severe enough to cause abscess and infection I would think that mesalamine is not strong enough to maintain remission for you. There are different tiers of drugs and mesalamine is the lowest tier and usually only used for mild Crohn's. Also, usually prednisone is given for more than just a few weeks as it takes a while to wean off it (ie usually given over eight weeks at least and weaned down 5 mg each week) so they course of steroids might not have started at a high enough dose or been given long enough. Just my opinion. Hopefully others will chime in.

 

[Pinecone7288]

So the fluid collection usually means infection (ie abscess) which is why I don't think it is necessarily new but probably has not healed and you needed more time on antibiotics. Probiotics would not be a good idea until the infection is gone in my opinion but not sure what your Dr told you. If your Crohn's is severe enough to cause abscess and infection I would think that mesalamine is not strong enough to maintain remission for you. There are different tiers of drugs and mesalamine is the lowest tier and usually only used for mild Crohn's. Also, usually prednisone is given for more than just a few weeks as it takes a while to wean off it (ie usually given over eight weeks at least and weaned down 5 mg each week) so they course of steroids might not have started at a high enough dose or been given long enough. Just my opinion. Hopefully others will chime in.

Yeah that makes sense to me. The colonoscopy showed Mild Chron's so that's probably why they didn't do an 8 week steroid trial, let alone bump me up on the mega drugs (above Mesalamine). Hopefully I can get this abscess eliminated.

 

[my little penguin]

Mesamalmine is no longer recommended as a monotherapy for crohns per Cochran report
It only treats the top layer of the intestine (similar to aspirin for a brain tumor per most Gi won’t help much but won’t hurt either )
Crohns affects the full thickness of the intestine do you leave the lower levels underneath in treated

Please get a a second opinion

 

[Pinecone7288]

Mesamalmine is no longer recommended as a monotherapy for crohns per Cochran report
It only treats the top layer of the intestine (similar to aspirin for a brain tumor per most Gi won’t help much but won’t hurt either )
Crohns affects the full thickness of the intestine do you leave the lower levels underneath in treated

Please get a a second opinion

Hello @my little penguin - It's a pleasure to see you again on here. I assume there are some spelling errors you made that make me a little confused. Are you asking me if I left my lower levels of my intestine untreated?

So if Mesalamine is no longer recommended, why was I prescribed it?? Is this a recent update on Mesalamine?? Thanks for your input!

 

[JessicaGrace24]

What MLP means is that unlike ulcerative colitis, Crohn's inflammation affects multiple layers of the bowel wall. With Crohn's, just going by a colonoscopy result is not always helpful because a colonoscopy cannot get a picture of every layer of the bowel wall whereas a CT scan and MRI can. What she is saying about mesalamine is that it only is able to treat one layer of the bowel wall/lining but you most likely have inflammation underneath that layer that the medication cannot treat, thus why mesalamine is no longer recommended as a stand alone treatment even with mild Crohn's. Your GI most likely does not specialize in IBD and may not be up on the latest research.

 

[Pinecone7288]

What MLP means is that unlike ulcerative colitis, Crohn's inflammation affects multiple layers of the bowel wall. With Crohn's, just going by a colonoscopy result is not always helpful because a colonoscopy cannot get a picture of every layer of the bowel wall whereas a CT scan and MRI can. What she is saying about mesalamine is that it only is able to treat one layer of the bowel wall/lining but you most likely have inflammation underneath that layer that the medication cannot treat, thus why mesalamine is no longer recommended as a stand alone treatment even with mild Crohn's. Your GI most likely does not specialize in IBD and may not be up on the latest research.

What a scary thought to think my GI wouldn’t be up to date on IBD related things. He seemed to have some knowledge even before the colonoscopy that I had Chron’s but who knows what he knows. Gotcha on the multiple layer intestine inflammation, I guess I never considered that a reality.

 

[my little penguin]

Some docs are old school
Which means they start with the least effective drug in this case 5-ASA’s since it has the lowest risk .
There is an old ccfa pyramid on drugs
https://www.crohnscolitisfoundation.../assets/pdfs/risk-and-benefits-transcript.pdfFrom 2009 so that’s how they use to do things

Mayo Clinic guidelines for now ;
https://www.mayoclinic.org/diseases-conditions/crohns-disease/diagnosis-treatment/drc-20353309

 

[Scipio]

Some docs are old school
Which means they start with the least effective drug in this case 5-ASA’s since it has the lowest risk .

And many insurance companies put saving a few dollars on the bottom line ahead of what's best for the patients they cover.
Which means they insist the docs start with the cheapest drug, in this case 5-ASA’s, instead of the much more effective but also much more expensive biologics.

 

[Pinecone7288]

So I talked with my GI doctor yesterday (they called me in). They assessed my CT scan with the contrast, they determined my inflammation was pushing on my ureter & making my kidney’s have backup urine over there.

They did a urine test & a blood test to look for an infection, but they saw no signals of an infection. My condition can change at anytime apparently, but they also said my kidney’s were performing well in terms of basic function.

They said the Mesalamine wasn’t holding down the inflammation very well, at least currently. Which is odd because i might have ruined my intestinal wall in the short term sense with the wine & coffee I had days prior.

Now they want me to go on Remicade ASAP, within the next 2 weeks. I’ve heard bad things about Remicade from other sources online. My GI Doctor even said that in a very rare case “Remicade” could potentially cause Lymphoma in me. Again, rare case probability.

I’m trying to see if I can get with a Functional Medicine doctor in the mean time that will take my insurance. I don’t want to even go on Remicade. My original colonoscopy also made the observation that I had “Mild Chron’s” so I don’t know how I can get my inflammation down. I have no pain or discomfort in the past week, during yesterdays appointment, or today.

They want my inflammation to be reduced via Remicade, not really anything else. I have some Turmeric I am using, but since Chron’s is a multiple layer inflammatory disease, I feel like I am trapped & that Turmeric might only do half the job that is required. (I’m not anti-medicine, nor am I a conspiracy theorist) but I don’t trust Western Medicine all the time, in all circumstances.

Can anyone give their input, or objections?

 

[Pinecone7288]

They also want to put a stent via a ureter procedure! How fun!

 

[my little penguin]

Remicade was used on my kiddo at age 8
It did great and gave him a nice pink healthy intestine
Lymphoma is only at a significant increased risk when biologics are used with 6-mp or imuran
My kiddo has been on biologics (different ones ) for 10 years now
No issues
Remicade for 8 months
But he had to stop due to allergic reaction
However -he has severe life threatening food allergies (epi pen ), severe pollen allergies , animals and multiple drug allergies
Since remicade has a murine protein base they figured he would react eventually
But it worked great

he then switched to humira for 5 plus years
And Stelara the last 4 years
So a big fan of biologics here
Inflammation has been calm and life of crohns is just in the background
No issues

 

[Pinecone7288]

Remicade was used on my kiddo at age 8
It did great and gave him a nice pink healthy intestine
Lymphoma is only at a significant increased risk when biologics are used with 6-mp or imuran
My kiddo has been on biologics (different ones ) for 10 years now
No issues
Remicade for 8 months
But he had to stop due to allergic reaction
However -he has severe life threatening food allergies (epi pen ), severe pollen allergies , animals and multiple drug allergies
Since remicade has a murine protein base they figured he would react eventually
But it worked great

he then switched to humira for 5 plus years
And Stelara the last 4 years
So a big fan of biologics here
Inflammation has been calm and life of crohns is just in the background
No issues

Very helpful input MLP. Thanks. I’ll have to consider what you said. I’m glad your son is doing better based on these biologics. I’m not sure if it will be good for me, but I’m worried they will be a dependent drug as opposed to using natural remedies. I know for a fact that another person here on the Chron’s Fourm managed to get their Chron’s into remission by using natural remedies, example of 1 natural remedy would be like Boswellia amongst a huge list of other herbs.

So I have limited time to investigate this, ugh. Anyhow. I hope you & your family have a great day!

 

[my little penguin]

Inflammation that is pressing on your kidney system is not something to experiment with
Crohns is for life

talk to your Gi
Once you have been in remission for a while then you have more time to experiment
Most on here have a extremely hard time controlling disease without medicine
But it’s far easier to try once your in remission.

finding any medicine that works is key

 

[Scipio]

Serious side effects from remicade are real but very, very rare. Serious bad effects from uncontrolled or poorly-controlled Crohn's are real and very common.

The biggest threat to their health that Crohn's patients face is not the rare side effects from remicade or other proven biologics. It is the threat posed by uncontrolled Crohn's disease.

 

[Lisa]

Serious side effects from remicade are real but very, very rare. Serious bad effects from uncontrolled or poorly-controlled Crohn's are real and very common.

The biggest threat to their health that Crohn's patients face is not the rare side effects from remicade or other proven biologics. It is the threat posed by uncontrolled Crohn's disease.

I agree with this! I've had Crohn's for over 40 years - started out as mild/moderate - would be put on medications that put me into remission for a time, couple of years even...then I'd flare and go back on meds...with the time between flares getting shorter and shorter and the disease getting worse and worse.....until I ended up with fistulizing disease.....

I was put on Remicade (finally) in late 2005 and have been on it since with GREAT results - I go every 8 weeks and am not on any other maintenance drugs (I was on 6-MP with the Remicade at first but stopped that probably 10 years ago now). Annual scopes have been good, health overall pretty good, I'm going to stay on Remicade as long as I can because it has been working so well for me.

If I hadn't been able to go on it, I'm sure I would have had to have surgery and would not be as healthy as I am today Crohn's-wise.

 

[Manzyb]

I began taking Remicade when I was 15 (now 37) and it literally saved my life. I took it for 6 years without any issues.

 

[Pinecone7288]

W

I began taking Remicade when I was 15 (now 37) and it literally saved my life. I took it for 6 years without any issues.

what were the issues after 6 years?? I’m very curious, if you don’t mind? They haven’t put me on Remicade yet, so I would love to know.

 

[Manzyb]

I ended up building antibodies to it and it stopped being as effective. I felt really well on it for a very long time

 

[cyberviper]

Mesamalmine is no longer recommended as a monotherapy for crohns per Cochran report
It only treats the top layer of the intestine (similar to aspirin for a brain tumor per most Gi won’t help much but won’t hurt either )
Crohns affects the full thickness of the intestine do you leave the lower levels underneath in treated

Please get a a second opinion

Yup, they made the mistake of prescribing me mesalamine, wasted 2 months and got even worse.

 

[ZaZ]

To be honest I think you need to see a colorectal surgeon in clinic to discuss this after you see a GI specialist.