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Recently diagnosed. My story/weird things/venting

V

Varazdates

Dont scroll down if you don't want to see pictures of pee! I don't know why it posted the large images instead of just attachments.

(Its long but i have some freaky pee pictures..check attached photos. I wrote this more for myself just to have a log of how things got started.)

Hi guys. I'm 27 years old and I recently got diagnosed with Crohns, so they say. Had my colonoscopy in January but I think I've had IBD since March of last year. Completely came out of no where. Everything was fine in my life then that one day BOOM, insane amounts of gas...went to the toilet 6 times like every 10 minutes just to poop out mucus and pas gas. So gradually then it started with lots of gas and frequent bowel movements with a lot of mucus and not much feces for the most part. Constant diarrhea and blood in the stool. I kept avoiding going to the doctor thinking that it was some sort of travelers diarrhea since it started while i was vacationing.

The GI doc did a colonoscopy and a biopsy and told me I have "Crohns-colitis". What the hell does that even mean lol? From my research it seems like its very difficult to distinguish between the 2 types of IBD and that more than just a colonoscopy and a biopsy are needed to figure out which disease you have. It sounds like he has no clue and hes just putting the 2 types together and calling it a day. A**hole.

One thing i want to mention is that I have almost zero cramps or abdominal pain. I thought thats the biggest part of IBD? I had some pains the first 2 weeks after the colonoscopy but never had any pain at all prior to the colonoscopy and hardly any to this date. I have no idea.

I got put on 40mg prednisone to taper down 10mg per week down to 10mg a day. 2nd week in I got prescribed 4 tablets of Lialda per day. About a month in of taking Lialda i started peeing purple. Yup. It looked like coca-cola in the toilet, and that means its mixed with more water than pee. I didn't get a chance to collect a clean sample so i took it from the toilet and no one would inspect it since they said it was contaminated. Finally a doc inspected it and said i have very slightly higher levels of white blood cells in there than normal. What was that then? No one knows. Even when the pee wouldn't be purple, after peeing i would notice a few hours later that there is a purple staining in the bowl of the toilet. Which means it was still coming in small amounts. I stopped taking the Lialda for a couple weeks then started taking it again to see if it would happen. It didn't. Regardless, I stopped taking it because one of the rare side effects was liver damage/failure, which could some how be associated with my purple urine.

So at this point I was just taking the 10mg of prednisone. The 10mg of prednisone alone didn't seem to be enough as all my symptoms started coming back. I bumped it up to 20mg and felt better. Tappered down to 10mg after 2 weeks. Then stopped taking it all together 2 weeks later. The amount of side-effects caused by the prednisone just completely freak me out. Its insane. I'm already super light at around 115-120lbs so I naturally have low bone density. Considering that, I'd end up with osteoporosis by the end of the year (completely uneducated in this assumption).

2 days after quitting the prednisone i started getting sever headaches and nausea and severe fatigue. Basically feel like complete shite. My headache would start from my neck and back of the head, and slowly creep to the front of my head where my eyes would even hurt really bad. Sometimes the pain would shift to either side of my head. 1 tablet of Advil made the pain disappear and reduced the nausea as well. This lasted about 4 weeks. I've recently been getting much less headaches and nausea but the fatigue is still bad. Multiple bowl movements a day consisting of pretty much pinkish water. I sometimes have formed stools along with the water but rarely. Not much mucus at all, but maybe a tablespoon or so of blood.

My new GI doc put me on Pentasa. Been taking it since yesterday, we'll see how that goes. I wish i could just eat prednisone all day. It was amazing. It made me feel like superman. I could do anything i felt amazing physically but more importantly, mentally! I felt so sharp, so much energy, so hyped and happy. I would sleep perfectly and would wake up perfectly without anything. 7am my eyes would just pop open and id be full of energy and spring out of bed. Too bad the damn thing pretty much kills you. Maybe not literally but might as well.

This is so long I'm pretty sure no one will read it which I dont mind. I'm pretty much just writing all this for myself as a personal diary sort of thing for when I forget what happened and i need to reference back to this time and the symptoms for whatever reason i can come back to this post. I feel like im leaving some stuff out. Idk, some of the things i wonder are how fast does IBD progress? How long do you have to be on prednisone to start getting the negative side effects? Do I have UC or Crohns? Can you get on and off prednisone in a short period of time? Like take it for a week or two then jump off. What about these other drugs such as Lialda, Pentasa, etc. Can you just take it then abruptly stop and then continue again 2 weeks ago like i did? Were my choices bad ones (probably)? Did i hurt myself doing the things i did such as stopping prednisone without consulting the doctor...stopping lialda without consulting, being on no meds for over a month, etc. Wanna see my purple pee? Sure. I act nonchalant but i almost died from a heart attack from all the anxiety this pee gave me. I'm still worried to this day. We never got to the bottom of it. I still have no idea what caused it. Just because its not happening anymore doesn't mean it DIDNT HAPPEN. It freaking happened so what the hell caused it what the hells wrong with me!? This is bullshit. I've never had a good experience with a doctor. None of them give a shit. Seriously. I honestly think theyre worse than lawyers. Sorry for all the negativity. I heard about budesonide as an alternative to prednisone. Apparently its supposed to do the same job but better with far less side effects. Anyone know how it compares?
 

Attachments

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Scipio

Scipio

Well-known member
Location
San Diego
Varazdates said:
The GI doc did a colonoscopy and a biopsy and told me I have "Crohns-colitis". What the hell does that even mean lol? From my research it seems like its very difficult to distinguish between the 2 types of IBD and that more than just a colonoscopy and a biopsy are needed to figure out which disease you have. It sounds like he has no clue and hes just putting the 2 types together and calling it a day. A**hole.
Click to expand...
"Crohn's Colitis" usually means that the patient has Crohn's disease that is causing inflammation in the colon. It does not mean that the doc couldn't decide between Crohn's and ulcerative colitis and so wrote both. Crohn's can affect the gut anywhere from the mouth to the anus, but most commonly it affects the terminal ileum of the small bowel ("ileitis") or the large bowel ("colitis") or both.

Ulcerative colitis, by contrast, is confined to the large bowel. So when Crohn's is also confined to the large bowel it can sometimes be hard to tell them apart. But it sounds to me like your doc is pretty certain that you have Crohn's and not UC.

Curious about the colored urine. If that persists I'd make sure they continue to investigate it. I haven't taken those drugs, so I don't know how common that side effect is.
 
S

sgholmes2002

My son was recently diagnosed with Crohn's and does not and did not experience any pain or cramping either. Apparently, that can happen. We love my son's GI doctor. We have full faith in him and his capabilities. Sounds like you need to find a doctor that is right for you. One that you feel confident in so you won't worry so much. The disease and the medication are all very scary. Having the right doctor helps ease the worry a bit. When I was pregnant with my first child, I interviewed pediatricians before picking the one right for me. I don't know if that is possible for a GI doc (don't know how many you have around), but you might consider talking to a few and looking up credentials before switching doctors. Just a thought. Again, my family is new at this Crohn's thing so just something from a mom's prospective.

Hope you find the right medication and quickly. So sorry you are going through this.
 
D

Deleted member 431298

Guest
Hi Varazdates
Sorry to hear about your condition.
I don't know about the discolored urine, but with leukocytes (white blood cells) in the urine you probably have an infection. Interestingly, over the past years evidence is starting to mount that Crohn's is indeed a chronic infection, most probably a mycobacterium infection. The prime suspect is MAP, and there is alot of information about that here:
www.humanpara.org
It all makes sense as MAP is causing an almost identical condition in cattle. It has been difficult to culture the bug in humans though, because it behaves differently (has no cell wall) in humans. But now it is being done, and MAP is found 7 times more frequently in Crohns patients than in healthy controls.

After 18 years of Crohn's I think this is the most plausible explanation for our friggin' condition. I had the same symptoms as you, diarrhea and bloody stools, but no pain.
Also from time to time there are leukocytes in my urine with no other symptoms, which indicate some sort of an infection. You can read my story here if you like: http://www.crohnsforum.com/showthread.php?t=81103

Do you consume alot of milk products or ground beef I wonder?
I would suggest you stay clear of ALL dairy - milk,all kinds of cheese, cream, products with milk fat, lactose, whey etc. as well as minced meat. MAP is transferred from infected herds to humans, and when an animal gets too sick to produce enough the farmer slaughters the animal and sells the infected tissue as ground beef. I find it absolutely crazy that it is allowed.

Also I would suggest you adapt a semi-vegetarian diet, get plenty of rest, get rid of as many stress-factors in your life as you can, get plenty sleep and regular exercise (walking or cycling for an hour a day has made wonders for me).
The above changes will help your body's ability to handle the MAP infection, and it has allowed me to get off the fierce biologic drugs (Remicade, Humira) that did indeed reduce my GI symptoms, but were probably allowing (MAP?) infection to attack my kidneys.

Finally, I recommend you watch all of the videos from the most recent 2017 conference held by MAP experts (micro biologists, GI's, and agricultural scientists) these are serious scientists discussing how to best treat MAP infection in Crohn's patients. A really valuable source of information!
https://humanpara.org/2017-map-conference-videos/

How I wish this information had been available to me 18 years ago..
 
Last edited by a moderator:
Lady Organic

Lady Organic

Moderator
Staff member
Location
Montréal, Canada
hello and welcome.
to some of your questions:
Budesonide is good for terminal ileum, not for colonic disease unfortunately. So yeah, I am stuck too with prednisone when i have a severe flare since I have colonic IBD (I am a mix of both diseases).
i have tried a new recent medication called Cortiment, it is a steroid released in the colon only (much less side effects than systemic prednisone). It didnt work clearly for me but could be an option to discuss with your GI.
Prednisone cant be taken in the long run and rounds of prednisone must be used as little as possible in our journey with CD. key is to find a good medication to maintain remission in the long run and avoid going up and down (flares and remissions) using prednisone.
Weird symptoms either form disease or medication should be reported asap to your medical team. a good team shall answer you quickly. I agree not all doctors are good just like for any other professions, but you got to find one you trust and a team you trust, this is possible:) CD is a life long disease and must be medically monitored carefully in order to avoid serious complications. i wish you well.
 
V

Varazdates

Wow thank you guys for the replies. Really appreciate all you taking the time to read me babbling.

Tuff said:
I have Crohn's colitis. It is the type of Crohn's that involves the large intestine.
You should not take Advil if you have Crohn's. You probably got withdrawal symptoms from quitting Prednisone abruptly. If you want to get better, you need to take your medications correctly. The rate you are going will make you a candidate for surgery.
Click to expand...
I see. Yeah, I found out about the Advil a short while after taking it but i really tried my best to take as little as possible. The pain was unbearably but i read i should try and take Tylenol instead.

How long does it take or how fast does the disease progress to the point of where you would need to get surgery? My initial diagnosis was that it was moderate. Then after telling the doc how well prednisone worked he thinks that its probably mild. Assume I go at this rate as you mentioned, how long would it take to need surgery? Or assume someone doesn't take their meds seriously as I have not. I realize everyone is the same and its a very broad question...but just rough estimate/timeframe???




Scipio said:
"Crohn's Colitis" usually means that the patient has Crohn's disease that is causing inflammation in the colon. It does not mean that the doc couldn't decide between Crohn's and ulcerative colitis and so wrote both. Crohn's can affect the gut anywhere from the mouth to the anus, but most commonly it affects the terminal ileum of the small bowel ("ileitis") or the large bowel ("colitis") or both.

Ulcerative colitis, by contrast, is confined to the large bowel. So when Crohn's is also confined to the large bowel it can sometimes be hard to tell them apart. But it sounds to me like your doc is pretty certain that you have Crohn's and not UC.

Curious about the colored urine. If that persists I'd make sure they continue to investigate it. I haven't taken those drugs, so I don't know how common that side effect is.
Click to expand...
Right. So how could the doc have decided that its Crohns if he never checked the rest of the affected areas that come with CD? No small intestine checked, no endoscopy performed to check esophagus/stomach. How could he be pretty certain? Like you said, if its Crohns-colitis, how do they differ and how would you distinguish between them? Not having done or cared to do any sort of follow ups and be pretty certain seems pretty irresponsible. Unless im still being ignorant and a biopsy reveals the answer to this.

What drugs have you taken? How have they worked for you? What type of IBD do you have?

Also, would crohns-colitis be considered the least severe form of CD?


scottsma said:
Yes,I have crohns colitis too.Welcome to the forum.Did you show your doctor those pics.,?
Click to expand...
Thank you. Yes I did. I showed 3 different docs. 2 GI's and my primary. None of them had a clue. They were just scratching their heads and told me to turn in a clean sample if it happens again. It hasn't.



sgholmes2002 said:
My son was recently diagnosed with Crohn's and does not and did not experience any pain or cramping either. Apparently, that can happen. We love my son's GI doctor. We have full faith in him and his capabilities. Sounds like you need to find a doctor that is right for you. One that you feel confident in so you won't worry so much. The disease and the medication are all very scary. Having the right doctor helps ease the worry a bit. When I was pregnant with my first child, I interviewed pediatricians before picking the one right for me. I don't know if that is possible for a GI doc (don't know how many you have around), but you might consider talking to a few and looking up credentials before switching doctors. Just a thought. Again, my family is new at this Crohn's thing so just something from a mom's prospective.

Hope you find the right medication and quickly. So sorry you are going through this.
Click to expand...
Thank you for the insight. I will be seeing the 3rd GI doc on monday.
Dr. Joel Feinstein. Wouldn't really know how to find a good doctor so im using healthgrades website and considering high reviewed docs and reading their reviews. This one has by far the highest reviews and a perfect 5 stars. Crossing my fingers.



OleJ said:
Hi Varazdates
Sorry to hear about your condition.
I don't know about the discolored urine, but with leukocytes (white blood cells) in the urine you probably have an infection. Interestingly, over the past years evidence is starting to mount that Crohn's is indeed a chronic infection, most probably a mycobacterium infection. The prime suspect is MAP, and there is alot of information about that here:
I had urine samples tested for infection that came back clear. I checked the link and searched about it. VERY interesting and promising stuff.

It all makes sense as MAP is causing an almost identical condition in cattle. It has been difficult to culture the bug in humans though, because it behaves differently (has no cell wall) in humans. But now it is being done, and MAP is found 7 times more frequently in Crohns patients than in healthy controls.

After 18 years of Crohn's I think this is the most plausible explanation for our friggin' condition. I had the same symptoms as you, diarrhea and bloody stools, but no pain.
Also from time to time there are leukocytes in my urine with no other symptoms, which indicate some sort of an infection. You can read my story here if you like:

Do you consume alot of milk products or ground beef I wonder?
I would suggest you stay clear of ALL dairy - milk,all kinds of cheese, cream, products with milk fat, lactose, whey etc. as well as minced meat. MAP is transferred from infected herds to humans, and when an animal gets too sick to produce enough the farmer slaughters the animal and sells the infected tissue as ground beef. I find it absolutely crazy that it is allowed.
I do consume a lot of milk and ground beef. I have pretty much cut down on milk to almost zero. Still consume ground beef (burgers). Still eat cheese but also have cut down quite a bit. 7 times more likely is insane!

Also I would suggest you adapt a semi-vegetarian diet, get plenty of rest, get rid of as many stress-factors in your life as you can, get plenty sleep and regular exercise (walking or cycling for an hour a day has made wonders for me).
The above changes will help your body's ability to handle the MAP infection, and it has allowed me to get off the fierce biologic drugs (Remicade, Humira) that did indeed reduce my GI symptoms, but were probably allowing (MAP?) infection to attack my kidneys.
Yes I have really not been taking my diet seriously at all. I just ate 3 pizzas with everything on it. I was doing pretty good with the diet for a couple weeks but ive been slipping lately. I walk my dog for about 1.5-2 hours a day. I've lived a very active lifestyle. Have always been involved in sports. I just recently stopped boxing after doing it for nearly 10 years due to this new condition but i need to go back. I wonder if impacts to the abdomen will have a negative effect?

Finally, I recommend you watch all of the videos from the most recent 2017 conference held by MAP experts (micro biologists, GI's, and agricultural scientists) these are serious scientists discussing how to best treat MAP infection in Crohn's patients. A really valuable source of information!

I watched and read some of the information about MAP. This is really amazing thank you so much for informing me about this. This brings hope to the situation. I can't wait for them to start making the EpiBro but i have no idea what the stock quantity will be like. I have'nt read too in depth nor watched all the videos but I'm definitely about to get back to it, along with read up on your story. Any sort of information brings insight at this point for me, being a rookie. You seem very informed about all this considering you are pretty much a veteran with the disease (unfortunately). Do you think we are close to closing in on a cure? How long do you think it will take?

How I wish this information had been available to me 18 years ago..
Click to expand...






Lady Organic said:
hello and welcome.
to some of your questions:
Budesonide is good for terminal ileum, not for colonic disease unfortunately. So yeah, I am stuck too with prednisone when i have a severe flare since I have colonic IBD (I am a mix of both diseases).
i have tried a new recent medication called Cortiment, it is a steroid released in the colon only (much less side effects than systemic prednisone). It didnt work clearly for me but could be an option to discuss with your GI.
Prednisone cant be taken in the long run and rounds of prednisone must be used as little as possible in our journey with CD. key is to find a good medication to maintain remission in the long run and avoid going up and down (flares and remissions) using prednisone.
Weird symptoms either form disease or medication should be reported asap to your medical team. a good team shall answer you quickly. I agree not all doctors are good just like for any other professions, but you got to find one you trust and a team you trust, this is possible:) CD is a life long disease and must be medically monitored carefully in order to avoid serious complications. i wish you well.
Click to expand...
Thank you for addressing the questions. How do you take your predispose when you have a flare? Can you just jump on prednisone whenever you need it then hop off again?

How long can you take prednisone before you start experiencing the negative side effects? I just discovered that some IBD patients, primarily CD patients, end up getting an ostomy bag. How common is this and what causes a patient to have to resort to a bag? How long would a patient generally be suffering from IBD and how far would the disease have to progress to need a bag? I had no idea that a bag was a part of this disease.
 
V

Varazdates

By the way, have you guys heard of this diet program. Seems like it really helps bring long term remission:

dailymail.co.uk/health/article-1076594/how-tackle-crohns-disease-help-drugs.html

And this is the direct follow up link to that article that the article doesn't post. They just mention the general website to go to but this is what you probably want to read after reading the dailymail article:

www.crohns.org.uk/crohns_disease/nutritional_therapy
 
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D

Deleted member 431298

Guest
You seem very informed about all this considering you are pretty much a veteran with the disease (unfortunately).

Well, to be honest up until about four years ago I was only a veteran in getting the usual crohn's drugs, while not looking after myself. Then for the last four years I have noticed that diet helped some. Actually it is only recently I really started looking into the ongoing MAP research, and realised the importance of eliminating any exposure to foods from diary cattle (+ eating healthy food). That has really helped.
Please don't think you need to know every line of research right after diagnosis. You will probably do more harm than good if you start spending half the night in front of the computer reading through articles and stuff...
A healthy couriosity combined with a bit of scepticism, is what I would recommend. Follow the GI's advice, they know what they are doing, and the primary goal is always to get into remission. When that is achieved, and energy levels allow it, focus on long term goal - which is drug -
free remission, not just symptom management.

Do you think we are close to closing in on a cure? How long do you think it will take?
Well, the microbiologists hope to have proven that MAP is a zoonisis (can infect across the species barier animals-humans) within two years. When that happens, authorities will have to start programmes to eliminate it from the food chain (as has been done with TB). The pivotal experiment will be to culture MAP from a human, put it into an animal, and demonstrate that a disease similar to Crohn's occurs in that animal.

Within two years a phase III trial will also be concluded which will tell if a treatment with three different types of antibiotics against MAP is effective. The study is carried out by Redhill Biopharma, and the antibiotic regimen is developed by Dr. Thomas Borody, who previously proved that peptic ulcers is caused by a bacteria. He did so by finding an effective treatment, also with different types of antibiotics.

Finally, within two-four years the english team around Prof. Hermond Taylor will have tested a modern vaccine, designed to "teach" the body to eradicate MAP.

So, all in all the next two to four years will be interesting to follow for us I think. Alot of very clever and sympathetic people are doing everything they can to help us. I find that absolutely amazing and encouraging.
 
T

Tuff

I assumed that the doctor diagnosed Crohn's based on the biopsy. Crohn's is a serious progressive disease. I started with only diarrhea, no pain, nothing else. Three weeks after my diagnosis I got a large horseshoe abscess that put me in the hospital for five months. It can progress fast. That may never happen to you, but the complications of Crohn's colitis are abscesses and fistulas. I had recurring fistulas for two years, and that was a nightmare. You need to get to remission with drugs, so that it doesn't progress to that point. I've been on a Prednisone taper twice now, and it works fast for me too. When you use it short term, the chance of severe side effects is much less. Sorry I was so blunt, but I don't want you to go through what I have been through.
 
Lady Organic

Lady Organic

Moderator
Staff member
Location
Montréal, Canada
Hi again, to answer your question about prednisone... prednisone is really not intented to be used regularly. It is for instance bad for the bones. Prednisone is used to help control a flare and bring remission fast. It should be taken exactly as the dr prescribed it and for about a month or a few depending on the severity of your condition. With CD and UC it is therefore important to find maintenance of remission drugs other than prednisone to be taken for the long run. If the 5-asa drugs such as the ones you were prescribed fail (pentasa), your dr will want to try another category of maintenance medication for you. After 5-Asa, there are the immuno-supressants (Imuran, purinethol, methotrexate) and the Biologics drugs (remicade, Humira..). Yes these are big drugs, but these are less scary than the possible complications of IBD.
Every IBD patient is different and no one can predict with assurance the course of disease of any patient. Some people can need surgery fast and often during there lifetime and other never have to experience it. The more you fallow your dr's instructions regarding medication and monitoring of your disease, the best chances you will give yourself.
As for the difference between CD colitis and ulcerative colitis, sometimes they can be easy to distinguish during colonoscopy. This seems to be your case.
I agree with you that further examination of your GI track could be done. usually a exam of the small intestine can be done after diagnosis of colitis. I got the simple X-ray barium exam if I remember correct. You could propose it to your dr. However, with the action of prednisone, the small intestine is less likely to show disease at this time, but this is worth discussing with your GI.

As you might have an interest for diet, I invite you to take a look at IBD-Aid diet in my signature that you will find in my previous post.
 
Jabee

Jabee

Regarding the dark colored pee, there was a mention on another thread about one of the 5-ASAs causing dark urine. It seems to be quite a common occurrence, and sometimes is the result of an interaction between the urine and whatever is used to clean the toilet.

I think there are two types of Budesonide: Entocort and Uceris. The former releases in the terminal ileum and ascending colon and the latter in the entire colon.

https://www.ncbi.nlm.nih.gov/pubmed/23569029
 
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dodo1953

dodo1953

Have had Crohn's for 43 years, and am doing comparatively well. 1 resection in 1990 gave me a 20 year remission but started back with a bang in 2009. Since the, have been on varying doses of pred, Humira for 4 years (worked and gave me 10 extra pounds-yay!).Tried entyvio which was a disaster. I watch my diet very carefully, eat what I can and drink a lot of water. I attribute my semi-decent life to good doctors and a bad attitude (on my part) to b.s.The most inportant thing is a good gastroenterologist who will listen to you, not just dictate what you should do.YOU have the disease and are the expert on what it's doing to you. If any doctor won't admit they don't know what is going on but won't refer for another opinon-WALK AWAY FAST. I hope you have health insurance.Try to get to a doctor at a university hospital-they see the more complex cases and are generally better than the average family doctor.INSIST on them listening to you and investigating your symptoms. Physician support is really important. Also, don't autmatically believe all the scary stories about prednisone. It has gone out of fashion what with all the new fancy drugs, but it is tried and true. Yes, it has side effects,everything does, but it WORKS.You will end up with osteoporosis anyway (as you age), and will have to be aware of a lot of other possible effects, but it gives you an appetite and energy.I've found the psychological effects of this disease to be as much of a problem as the physical, and I don't think that's uncommon with any chronic disease.
 
Scipio

Scipio

Well-known member
Location
San Diego
Varazdates said:
Right. So how could the doc have decided that its Crohns if he never checked the rest of the affected areas that come with CD? No small intestine checked, no endoscopy performed to check esophagus/stomach. How could he be pretty certain? Like you said, if its Crohns-colitis, how do they differ and how would you distinguish between them? Not having done or cared to do any sort of follow ups and be pretty certain seems pretty irresponsible. Unless im still being ignorant and a biopsy reveals the answer to this.

What drugs have you taken? How have they worked for you? What type of IBD do you have?

Also, would crohns-colitis be considered the least severe form of CD?
Click to expand...
The docs often diagnose Crohn's from the biopsy specimens. Crohn's has some distinctive elements seen on histology, particularly granulomas, that UC lacks. So if those were seen in biopsy specimens taken from the colon then by definition you have Crohn's colitis. Whether you also have Crohn's somewhere else too is another matter. The small bowel and upper GI tract would need to be examined by endoscopy and or various imaging studies to look for signs of Crohn's there as well.

I have Crohn's disease confined to the ileum. And the primary drug I have taken is occasional courses of budesonide.

I have read a paper that ranked the aggressiveness of Crohn's based on location a ileal > ileocolonic > colonic. So in that sense Crohn's colitis could be considered the least-severe. But as with all things Crohn's, there is great individual variability. It's perfectly possible for a person with mild or moderate ileal Crohn's to be in far better shape, despite having a less favorable location, than another patient who has severe Crohn's colitis.
 
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