Whatcha Know About Crohn's Disease?

[JonDuke]

On January 1st, I started having some nastiness in my stomach. I knew after 4 days that is was bad, but didn't go see a doctor until after 2 weeks of major diarrhea.

My dad has had IBS for quite a few years and just 2 months ago, was diagnosed with stage 4 colon cancer. My younger brother has had a severe case of Crohns for 8 years now, so I was pretty sure I knew what was coming. I spent 8 hours in ER on Wednesday and was booked for an emergency colonoscopy the next day.

2 days ago, post colonoscopy, I was told I have IBD, severe Colitis throughout and Crohns in my Colon. They also took multiple biopsies, but my GI said she doesn't suspect any Cancer. They started me on an advanced dose (50mg/day) of Predniose. (worst tasting drug I've ever had in my life)
I'm on 2 other anti inflammatory meds: Asacol, which is a pill, and Coetenema, which is a Hydrocortizone retention enema. Fun times indeed and glad my wife laughed with me instead of at me.

I lived with my brother when he was first diagnosed and saw first hand how horrible the first couple years of his life were with the disease was. He had a dramatic weight loss, lost a relationship, his job, and went through hell. He tried Humira, ASA5, Prednisone, Vitulizomab, Imuran, etc. They took 7.5 years to find a treatment combo that works for him. (he's on 800mg of Remicade every 6 weeks). And he's doing awesome now. Our family is grateful to finally see him so happy after living so many years in hell.

Now it's my turn and although somewhat familiar with the disease, I'm hoping others can share anything they've seen help tame the symptoms. I know an increase in daily exercise and changes in diet are probably key, but what else should I be doing?

I'm also not sure what to think of Prednisone. I know a common side effect is weight gain. My brother didn't gain a bunch of weight, and that's my main fear. I do NOT want to gain more weight or get balloon faced. Have read lots of other horror stories and makes me wonder how miserable this could be.

Any pointers?

Bonus points: I've walked with my brother in the annual "Gutsy Walk", but we never had a team name. There's were some pretty fun team names, and I plan on going all out this year. I need help with a new team name. Other examples are: Sh*t Disturbers, Kings of Thrones, Loose Movements, No Colon Still Strollin, Crohn Thugs n Harmony, etc etc. I know someone here can suggest a better name for us to use.

[dissentowner]

That sucks dude but at least they have come quite aways with treating it. I had a cousin that got it when he was really young and it ended up killing him before he hit 40. Best wishes in your fight.

[Nage Waza]

I have a family member who has spent over 40 years studying Crohn's (might be a world leader in research). If you feel you are unsure where to go next or have some specific questions, PM me and I will get you answers, as best as I can. I will send your text and post the answers.

[Fozzie_DeBear]

All I can say is that there are a wide range of treatments available, so 'shop around' but I would start with the one that worked for your family member.

Also, be an active participant in choosing your healthcare options...if we had listened to the doctors without critical thought we would not have tried options which ended up being the best treatment.

[GoinAllTheWay]

My brother has Crohn's too but from what I recall, it started quiet a bit differently for him. It all started a few years ago. He was at home when suddenly he came down with pain so bad in his abdomen that it brought him to tears and he is a feakin tough dood. He was taken to the ER and they had to perform emergency surgery on him. This is where things get a little confusing as I'm sure the pain was due to a growth that had formed on his prostate I think? It wasn't a cancerous growth, I know that but shortly after I seem to recall him being diagnosed with Crohn's.

So basically past that, the impact on him appears to be minimal. He has to go from transfusions every 6 weeks or so and I think that's where he takes the Remicade as well. That will lay him out for a minimum of a day and a half.

Other than a change to his diet, the transfusions appear to be the only part that he really has to deal with. I don't think he experiences any discomfort anymore assuming he follows his routine. He used to be quite a drinker in his younger days, he only does that once a year now but don't think the Crohn's has anything to do with that.

I hope it goes well for you and the impact on your life is minimal. I know it can be treated with little impact on your life and I hope the same goes for you.

[To Be Quite Honest]

That sucks man.

Always look at the diet first.

Names:
"Squirts"
"Small Squirts"
"Juicy"
"Tuba"
"Juicy Tuba"
"Colostomy Baggers"
"Rectal Expansion"

I'll have more later.

[To Be Quite Honest]

Globe Trotters
Hot To Trot

It's likely that you, your brother and your father have been eating foods your entire life that react to y'all. Your dad has taught you your diet habits after all. Figure out what foods are causing thee reactions and life could improve greatly in the toilet department.

[rubecube]

I know it's a pretty harsh drug but I don't understand why they don't go with Remicade sooner. My Chron's is a little bizarre in that it's attacked both my digestive system and my eyes. But yeah, I went through the prednisone and Imuran stages and then finally to Remicade and that's been working for me for about 2 years now.

There have been some pretty interesting studies recently on possible causes and permanent solutions to IBS.

[flamesrule_kipper34]

JonDuke, sorry to hear about your diagnosis...interesting that I was considering starting a thread like this as well. I'll tell you a bit about my story...

I was having very mild/dull issues with stomach pains over the course of 2013, no affect to my bowel habits but it did affect my appetite and I'd have minor stomach issues. So minor that I thought nothing of it, but they increased in frequency so I thought I'd get it checked out.

Started getting a battery of tests in August, September and October...a CT Scan showed inflammation in an area of my colon...got an emergency colonoscopy and they couldn't get the camera through one of the areas because of a severe stricture.

They made an unofficial diagnosis at the time of Crohn's and scheduled me to see a surgeon about the stricture. In the mean time at the end of November I got put on a tapering dose of Prednisone, started on 40mg and JUST finished my dosage this week.

In terms of side-effects the weight gain comes from eating, it will make you insanely hungry...thankfully I am a pretty active guy and watch what I eat even with that insatiable appetite, I gained NO weight whatsoever but I can see why people do the appetite thing is crazy.

As for balloon-face I noticed that my face did get more round and it's starting to ease up a bit now that I've come to the end of my dosage but even then I've been told it may take a month or two after until my face looks 100% back to normal...but I'm a really skinny guy (140lbs 6'0) so it wasn't as big of a deal for me with my balloon face.

In terms of surgery, I got scheduled for surgery Christmas Eve for bowel resection and I'm in recovery now...they had to take out the diseased area, including the stricture which went successfully. The surgery wasn't AS bas I thought it would be...spent only 3 days in hospital, thankfully got out the day before my birthday.

I'm insanely tired all the time now which I hear is normal for up to 3-6 months post-surgery (which they have now been able to officially diagnose me as having Crohn's)...I'm not able to work out yet but I'm back to normal activities other than exercise, back to work next week as well.

I get another colonoscopy done in March to see what my colon looks like post-surgery and if any inflammation exists/how much has come back since I'm off the prednisone. At that point they said they'll likely want to start me off on Humira and/or potentially Remicade depending on how Humira works.

Humira I'm told is for more mild cases and can manage well (and doesn'te require you to go for infusions every 6-8 weeks, you can take a self-syringe which seems easy enough).

If you have any other questions let me know...so far I've been able to take most of this in stride, but I can imagine how you must be feeling. It's never easy to hear these things and especially with your brother's severe case yes it can be scary, but you're not alone brother and like others have echoed they really have come far in recent years and life can be managed with this disease!

Keep me up to date with how things are going, I'm always wanting to hear about others experiences and what is and what isn't working for them.

Honestly my pain has been so manageable I think that's because of how physically active I have been, I'm a vegetarian so I'm not sure from a diet persepctive what causes more issues than not because for the most part my Crohn's symptoms to date have been mild...so take that for what it's worth too.

[JonDuke]

Originally Posted by rubecube

I know it's a pretty harsh drug but I don't understand why they don't go with Remicade sooner. My Chron's is a little bizarre in that it's attacked both my digestive system and my eyes. But yeah, I went through the prednisone and Imuran stages and then finally to Remicade and that's been working for me for about 2 years now.

There have been some pretty interesting studies recently on possible causes and permanent solutions to IBS.

Remicade was a wonder drug for my brother. The results were instantaneous and he's done a total 180 from where he was. I asked my GI about Remicade immediately after being diagnosed and she told me it would be too harsh to my system as an introductory treatment. That's why she went with Prednisone for now, I think? I'll request it again if this doesn't work, but am placing my trust my GI's experience to get me through this the quickest. She's an awesome doc and was easy to talk with, but I kind of wish I could have the same GI as my brother since I'm guessing we are very close in gentical make up and that treatments would be similar on both of us. But then again...I have no idea how this works yet.

But yes...I'm going to press for Remicade for sure

[sa226]

^^^^^^
With regards to the events leading up to your diagnosis. You said that your mild symptoms were very dull, but during the colonoscopy they couldn't get the camera past a stricture? Did you not notice changes in your bowel movements?

I ask because I think your case is a good example of needing to pay attention to your body. GI issues I think are sometimes too easily dismissed by doctors and potential patients.

(Sorry for basically asking about your poop)

Sent from my SGH-I747 using Tapatalk

[1stLand]

my ex-gf has this.

She is on Remicade every 2 months.

Good thing you caught it early. most people are too embarrassed to see a doctor and the disease gets so bad their colon has to be removed.

Change your diet as well. Do alot of juicing!

[flamesrule_kipper34]

Originally Posted by sa226

^^^^^^
With regards to the events leading up to your diagnosis. You said that your mild symptoms were very dull, but during the colonoscopy they couldn't get the camera past a stricture? Did you not notice changes in your bowel movements?

I ask because I think your case is a good example of needing to pay attention to your body. GI issues I think are sometimes too easily dismissed by doctors and potential patients.

(Sorry for basically asking about your poop)

Sent from my SGH-I747 using Tapatalk

No worries, and good question.

That's what confused the heck outta me when they told me there was a stricture so severe a tiny camera couldn't get through...how was I not having obstructions or major issues?

The answer is no, I had and really always have had normal bowel movements...and the reason they said it didn't affect me is because of WHERE my stricture was...it was at an area of my colon that is part of the more liquid process and not the solid process which is why everything was coming out "normal".

Hopefully that makes sense? In terms of my bowel movements if you're familar with the Bristol Stool chart, I've always been 4 or very close to it.

But great comment on listening to your body...they told me I've likely had this for years when they found that stricture but because my symptoms have been SO minor that it was hard to think anything of it.

They reiterated to me not to blame myself for not coming sooner because this can happen where issues/symptoms are very mild but it makes a great point...if something is wrong get it checked out!

[Minnie]

My daughter did one round of the Remicade in the hospital, while we were waiting for insurance to approve the Enbrel. It was interesting. They told you that you have to have a TB test before they start you on any of the biologics?

She was on a pile of Prednisone from several months (plus Methotrexate & Sulfasalazine) and also had two Prednisone pulses when she was in the hospital the round they gave her the dose of Remicade - I want to say it was 1200 mg? through the IV - so 2400 mg. She was mildly moon faced up to that point, and after that? Yeesh. She got the buffalo hump on the back of her neck, seemingly overnight. And then she was also very moon faced.

We did as much low sodium as we could, with her diet but she gained about 25 pounds or so (she lost it all, and more, over several months, after weaning off the Pred), over the 6 months she was on the Pred. The other things we/she noticed was some neck pain, which I assume was from the 'buffalo hump' messing things up; bad insomnia; very moody/snappy/grumpy; stretch marks (they monitored her closely for Cushing's); she saw a bit of an uptick in acne; she was thirsty all the time; she was quite foggy, mentally - couldn't maintain her line of thought very well...there were probably a few more things but I'm exhausted right now and can't think of all the side effects she dealt with.

She ended up back in hospital on NY's, just a couple of weeks after the pulses, because they thought she had Avascular Necrosis in her one shoulder, caused by the Pred. That was just piles of fun, lol.

Have a good friend in the US that has Crohn's. She's on Humira right now, but they're throwing around the idea of moving her to Remicade.

Those biologics can make a world of difference. Although it's a completely different disease process, the biologic my daughter is on turned things around for her. It took a while but she's a million miles away now, from where she was 2 years ago - heck, even a year ago.

I wish you nothing but luck.

[Swift]

GI Bros

[psicodude]

Sounds like you caught it early, which is good. My brother started having symptoms while working in the Philippines for a few years and was too afraid of their health care system to do anything about it. By the time he returned to Canada and went to the Dr., the disease had basically demolished his colon. He had it removed about 2 years ago and uses a colostomy bag now. He says it sucks, but it's way better than living with the pain of advanced Crohns.

Good luck dude.

[Nage Waza]

Here is the feedback from a leading doctor and researcher on the subject (name withheld!):

- Sounds like he is on the right track
- Will require another colonoscopy to see if he is healing and then get off prednisone and on another immune combination
- Needs to eat high protein foods, not smoke or drink booze
- One study from Israel showed healing with pot, yet to be corroborated
- There are benefits to meditation, because this is a chronic disease and patients need to find a way to cope with it. Benefits have been studied and proven.
- There is no known cure and all the drugs used have potentially serious side effects
- As best as they can I always told my patients not to let the disease control them

Good luck!

If you have any more specific questions, forward them along.

[Clarkey]

To the individuals who have been diagnosed with these various gastro-intestinal health problems, I'm curious, was there anything in particular that you think precipitated the onset? Were you going through a stressful period in life that could have been the tipping point or was it seemingly out of nowhere?

[JonDuke]

Originally Posted by Clarkey

To the individuals who have been diagnosed with these various gastro-intestinal health problems, I'm curious, was there anything in particular that you think precipitated the onset? Were you going through a stressful period in life that could have been the tipping point or was it seemingly out of nowhere?

I myself have been going through a fairly stressful time the 12-16 months prior to being diagnosed. Similar to the financial, family, wife and kids issues that most people worry about, plus some added concerns about my dad (had a fire, had to fly back to NB to move his stuff into a storage unit then 2 weeks later into his new place, he had new knees, and then the recent Cancer diagnosis). I would say this past year has been the most stressful for me, easily. I don't think it's caused my disease, but I'm sure it didn't help.

As a side note: I also had some early symptoms that looking back on now, chronologically, make a ton of sense. I had gone to an after hours clinic and to the ER just over a year ago with a problem that they couldn't remedy. I know I'm opening myself up to be the butt of jokes (hardy har) but I had an itch that was driving me bonkers. Right after I pinched a loaf. I knew I was keeping clean, and I even went above and beyond, but it was always coming back. This was something that kept me awake many nights. The doctors guessed it was just a fissure from a hard movement. I even asked them if it could be related to Crohn's since my brother had such a severe case. They said no, and the creams and wipes they suggested were no help. The itch eventually subsided, and is almost non existent now, but I believe those were the initial signs of my colon telling me something was awry.

As noted, my father, brother and I all have serious GI issues. The main 2 suspects that we shared in common and could be precipitating factors are smoking and Coca Cola (we drank an extremely unhealthy amount of Coke as kids) That's really all I can think of though.

[To Be Quite Honest]

Originally Posted by JonDuke

I myself have been going through a fairly stressful time the 12-16 months prior to being diagnosed. Similar to the financial, family, wife and kids issues that most people worry about, plus some added concerns about my dad (had a fire, had to fly back to NB to move his stuff into a storage unit then 2 weeks later into his new place, he had new knees, and then the recent Cancer diagnosis). I would say this past year has been the most stressful for me, easily. I don't think it's caused my disease, but I'm sure it didn't help.

As a side note: I also had some early symptoms that looking back on now, chronologically, make a ton of sense. I had gone to an after hours clinic and to the ER just over a year ago with a problem that they couldn't remedy. I know I'm opening myself up to be the butt of jokes (hardy har) but I had an itch that was driving me bonkers. Right after I pinched a loaf. I knew I was keeping clean, and I even went above and beyond, but it was always coming back. This was something that kept me awake many nights. The doctors guessed it was just a fissure from a hard movement. I even asked them if it could be related to Crohn's since my brother had such a severe case. They said no, and the creams and wipes they suggested were no help. The itch eventually subsided, and is almost non existent now, but I believe those were the initial signs of my colon telling me something was awry.

As noted, my father, brother and I all have serious GI issues. The main 2 suspects that we shared in common and could be precipitating factors are smoking and Coca Cola (we drank an extremely unhealthy amount of Coke as kids) That's really all I can think of though.

Could be Candida. A diet of sugar and processed foods lead to candida and once it gets over blown it leaks out the butt and causes itching. It leads to malnutrition because your natural flora can't help you digest properly. Why, because it's not there anymore. The Candida has taken over your GI system.

Then there are the people that say it doesn't exist and is made up.

I believe poor diet is a root cause of disease and we are surrounded by food-like products that cause us a lot of harm and if our bowels can't absorb even the crappy nutrients in processed foods then our heath is even worse off.