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Crohn's Disease Forum » General IBD Discussion » Getting to Know Crohn's Disease


12-04-2012, 12:47 AM   #1
wdris6
 
Join Date: Dec 2012
Getting to Know Crohn's Disease

Hi, my name is Wyatt.
Last november I suffered a broken leg during a high school football game. I was hospitalized and soon developed a rare syndrome called compartment syndrome. I underwent 11 surgeries in 39 days and had my life drastically changed in the blink of an eye. One thing I will never forget about is my digestive struggles during my hospital stay. I experienced constant diarrhea, iron deficiency, and abdominal pain and cramping. I never was a big eater, but the hospital destroyed my appetite and whenever I did eat I experienced terrible bowel movements. I am now a junior in high school and still recovering from my injury, my time in the hospital drove me to take an Anatomy class this year. At the beginning of the year each student is diagnosed with a chronic condition, and I was diagnosed with Crohn's disease. I know a couple people who have been diagnosed with Crohn's and they have been very open with me about their condition and the disease. I was hoping to learn more about the disease from others who have it and gain an understanding of the mental and physical burden it entails. I documented my struggles in the hospital not to try to compare my condition to Crohn's because there is obviously no comparison, but I wanted to share my story to show that I do understand how tough an injury or disease can be on a person and the many complications that come with both. If anyone is comfortable sharing about their condition or their knowledge of the disease, I would love to hear your story and your knowledge of the disease. If not I completely understand. Thank you.
12-04-2012, 01:00 AM   #2
LisaL
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Hi Wyatt, This is a great place to learn about what we all go through in our experiences of Crohns Disease. You will see that there are some general common denominators, but Crohns Disease looks very different from person to person. That is just one of the frustrating aspects of Crohns.

We are generally very open and welcoming, so take a look around. You might get more responses to specific questions, once you have them formulated.

Good luck, and I hope you are feeling better soon.
Lisa
12-04-2012, 01:10 AM   #3
wdris6
 
Join Date: Dec 2012
If anyone feels comfortable answering, I have some specific questions about Crohn's disease that I can post? And they can be answered in a private message rather than directly on the forum. A more general question of mine, is what is the best medication for Crohn's you think there is?
12-04-2012, 06:01 AM   #4
shamrock15
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I think you will find many here comfortable answering. This is the best forum I have ever seen for venting, and crohn's people, especially when they get familiar with it, don't seem to mind letting it rip (yes, two meanings there...)

For me, remicade has been the king of meds. Nothing else comes close. Prednisone just seems to delay the inevitable. In any case, you can absolutely PM me if you would like to ask more. I am a teacher myself, and may get the chance to teach my own students about this and you might just help frame some of the classes.
12-04-2012, 06:40 AM   #5
Susan2
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If anyone feels comfortable answering, I have some specific questions about Crohn's disease that I can post? And they can be answered in a private message rather than directly on the forum...
Ask away. Most Chronies have got beyond being embarrassed about any question that you might think up. Anything related to Crohn's (or other IBD) is fair game on this forum.
12-04-2012, 08:44 AM   #6
Pirate
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Wyatt, thank-you for being willing to want to learn what we go through. So many people just go through the motions of understanding and very few are willing to ask questions and really listen.

Everyone here suffers in a differant way but yet we all suffer the same. We all at one time or another suffer from depression, we all suffer from embaressment a time or 2. But most of all we all want answers and a cure. We all want a normal life free of CD but we learn to except the fact that we will live with it for the rest of our lives. And we all seem to be more sensitive towards others with differant diseases.

Ask away and you will surely get answers because love to help educate others.
__________________
I'm the Captain of my own pirate ship. You'll find me on the POOP deck!

Greg Yancer
Diagnosed w/ CD Febuary 1986
No surgeries
Current meds:REMICADE (CATS SCARE ME), Pentasa, Nexium, Probonics.
12-04-2012, 04:36 PM   #7
wdris6
 
Join Date: Dec 2012
Feel free to answer any of the questions you want to, any information is great. Thanks again for all your help.

What signs led to your diagnosis? Were you hospitalized? (If you feel comfortable sharing.)

When you were diagnosed what changes did your doctor recommend to your daily life? How did these changes affect you? What specific changes did you implement?

What treatment options did and do you have now?

What are some of the side affects of the treatment options?

How has crohn's affected you mentally and physically?

How exactly does Crohns affect your body day to day? How do you normally feel?
12-04-2012, 05:14 PM   #8
shamrock15
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I shipped an answer to you through PM. Didn't see this one here!
12-04-2012, 05:46 PM   #9
Pirate
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1. I was suffering from bloody stools, pain and severe weight loss. 155lbs down to 118lbs. My first hospital stay was for a week as they treated me for bleeding ulcers. out a month and back in for a week with a diagnoses finally. I had my stomach pumped (hate NG tubes) because they found gangrene in my stomach.

2. diet. Fish, chicken, no dairy, no raw veggies. Found Ramian noodles were a safe food for my stomach. Forgot to think about my heart.

3.In 86' it was pretty much steriods, IVs and soft and liquid diets. Now Remicade and Pentasa.

4. Steriods= breaks down the calcium, liver and kidney damage, etc.
Remicade= joint pain, TB, liver and kidney damage, higher risk of cancer

5. Have had to deal with depression and anxiety, have had to deal with thoughts of suicide. Physically= fatigue, joint pain, loss of my teeth, muscle loss, vision loss.

6. Exhaustion when things aren't going good. Pain. But when things are going good you would never know I had it. Now fairly good. Been in remission for the past 4 yrs w/ minor flares occasionally.
12-04-2012, 05:49 PM   #10
mbishop
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What signs led to your diagnosis? Were you hospitalized? (If you feel comfortable sharing.) I was hospitalized at my initial diagnosis for a week. Aside from a long spell of chronic diarrhea (5 years), I had fisulae, general abdominal pain, and finally a high fever and dehydration.

When you were diagnosed what changes did your doctor recommend to your daily life? How did these changes affect you? What specific changes did you implement?
My doc first recommended I sign up for life insurance before formally diagnosed. Most of the lifestyle changes were diet and needing to be near a restroom on a constant basis. Most of us have tried to minimize the impact to our lives, but depending on the disease stage and whether you are flaring or not that can be difficult, but its something we all aspire to.

What treatment options did and do you have now?
I tried most of the major drugs at one point or another for Crohns or its complications, including Entocort, Prednisone, Imuran, Pentasa, Cipro, Flagyl, Nystatin, Prilosec, Aciphex, and probably a couple others I'm forgetting. Right now, I'm on off-label use of Humira. Many folks here have success with a med for a time, then grow resistant or their disease relocates, necessitating a change in meds.

What are some of the side affects of the treatment options?
These vary greatly depending on the med. Just look at Prednisone and Tysabri on WebMD for a good look at the spectrum of side effects.

How has crohn's affected you mentally and physically?
Crohns has both mental and physical impacts. Fatigue, fevers, flares, diarrhea, lots of different physical impacts. Mentally, it is linked to anxiety and depression. Take a look at the posts here to see the range of issues folks suffer.

How exactly does Crohns affect your body day to day? How do you normally feel?
It depends on the day. For most of us, it ranges from almost normal to being in a hospital bed. Even on the good days, the sense of urgency and the general fatigue hit the best of us.
12-04-2012, 06:19 PM   #11
Magnolia soulangeana
 
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Hi Wdris6,

My first symptom was fatigue, for months, my GP didn't know why. I had dirrahea a lot, but I kinda thought it was just normal for me - that I just had a sensitive system, so I really didn't even think to mention it to the doctor. In mid-September I started seeing bright red blood in my stool and followed up with the GP who said I was anemic and had been for a while. He referred me to a GI specialist who did a colonoscopy which confirmed inflamation in my colon. I was started on antibiotics, but got worse instead of better. When the biopsies taken during the colonoscopy came back and verified I had Crohn's colitis, I was switched to prednisone. Unforeunately, I did not recover on the pred as fast as I should have, so I was hospitalized for 5 days. They took me off all food and drink for 2 days, pumped me full of antibiotics (Flagyl and Levoquin), fluids and more steriods. Once I was allowed to eat soft food and switched to oral meds, they discharged me and I am currently recovering at home.

My doctor recommended iron supplements (ferrous sulfate), eating a low fiber, low fat, diet without any artificial sugars, eating small amounts more frequently. It is hard to make changes to your routine, but when the consequences of not following the instructions means you feel worse, you start to conform pretty quickly. It's the best way to keep a good quality of life. So far none of the changes have been drastic - I am just a lot more thoughtful about what and when and how much I eat. I am currently taking 10different medications which add up to about 22-26 actual pills to swallow each day. That's tough. Just choking them all down can be challenging. And psychologically it's a bit depressing - you'd think I were on my death bed if you saw my night stand.

Right now they are trying to get the flare under control, so I am on antitbiotics and steriods and antinflamatory drugs. They gave me a PPD skin test (for tuberculosis infection) in the hospital: that way they know whether they can switch me to a biologic drug later, if necessary, but I haven't discussed this with the dr yet.

Probably because all of this is new to me, it's hard for me to tease out the side effects of the meds and what's a symptom of the illness. I think generally med side effects have been pretty minimal. Mostly I am very exhausted (I can sleep for 12-18 hours at a time sometimes). I feel light headed, dizzy, when I walk around but that could be due to not eating enough and being anemic. I have a hard time concentrating and remembering things at work. I attribute the bloody dirrahea, cramping, fatigue to the diagnosis. I have unintentionally lost 15 lbs, just because it's hard to eat some days - you worry you might be swallowing a timebomb that you will regret later. I was at a healthy body weight, and now I feel too thin.

In many ways I think the mental effect has been harder than the physical. I am very independent, A-type person - I am not very good at taking it easy or letting others look after me. I don't want to be a "sick" person, but I know that I am, at least for now. I used to be a long-distance runner and do hot yoga, which I have had to give up due to the fatigue. That's been tough, because being athletic has always been a part of my identity and my primary method of stress relief. I've also had to take time off work, which had been hard - I love my job and worry about letting my team down. Or worse, worry that I won't be missed at all.

Right now in a flare, I feel tired day to day and highly attuned to anything my digestive tract does. I used to never notice an odd gurgle or cramp, now it's like a red flag that I monitor carefully. It takes mental energy. I have to practice restraint when eating - overeating is a big no-no for me - which is hard when so much of our lives revolve around food. Always planning your day around bathroom visits and making sure you don't get to far away can be pretty stressful and embarrassing. I have had moments when I am talking to someone and suddenly I HAVE to run to the bathroom. Now my husband understands, but at work it's definitely awkward.

I am hopeful that once this flare comes under control that I will be back to "normal". Sure I might take some maintenance meds and make a few different meal selections, but I hope that I can overcome the fatigue, get back to exercising and working, and just feel more like myself again.

Good luck on your school project. I hope this helps you - ask me more questions if you want. You might like the "you know you have crohn's if" thread to get a more general sense of what a lot of people deal with day to day. It's good for a laugh if nothing else.
12-04-2012, 06:40 PM   #12
AlexJ
 
Join Date: Jul 2011
What signs led to your diagnosis? Were you hospitalized? (If you feel comfortable sharing.)

Intense burning stomach aches, painful urination and debris in urine, painful bowel movements, complete loss of appetite, unable to function properly from day to day.

When you were diagnosed what changes did your doctor recommend to your daily life? How did these changes affect you? What specific changes did you implement?

I tried all sorts of diet related changes, medicines, etc. Nothing really worked and I opted for a bowel resection.

What treatment options did and do you have now?
I've tried different diets, prednisolone, azathioprine, pentasa, budesonide, infliximab. I currently take mercaptopurine as maintainence.

What are some of the side affects of the treatment options?
Prednisolone - extreme weight gain, huge appetite, constant hunger, large moonface, I also experienced tooth grinding, felt disjointed from the world and had strange mood swings
Infliximab - terrible acne

How has crohn's affected you mentally and physically?

I went from an average joe in all aspects to losing three stone in about three months, gained four stone in six months after starting pred. This was about a year ago, at the time of writing I am at my peak - I've experienced no ill-effects since my second resection and am currently at a very healthy weight and am having a great time at university with no symptoms whatsoever.

My mental state deteriorated rapidly because of prednisolone - I became addicted to online poker and would sit and play for 12 hours a day, I took leave from my job, lost my long term girlfriend of two and a half years and really didn't care about anything. After having my first resection I came off pred completely, went back to work, quit poker, started uni and am back to being (an even better version of) my previous self.

How exactly does Crohns affect your body day to day? How do you normally feel?
I take loperamide, psyllium, digestive enzymes, iron, multivitamins and mercaptopurine every day. I have up to 5 bowel movements per day (10+ without loperamide/psyllium). I have a constant mild stomach ache every day but it's nothing I can't deal with. I feel good, i play sports, have a great social life and am in my prime
12-04-2012, 09:30 PM   #13
wdris6
 
Join Date: Dec 2012
Thank you all for your incredibly thoughtful and interesting posts and stories. I have learned so many new things about Crohn's just from your fantastic posts. I hope the posts keep coming!
12-04-2012, 10:02 PM   #14
SarahBear
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What signs led to your diagnosis? Were you hospitalized? (If you feel comfortable sharing.)

When you were diagnosed what changes did your doctor recommend to your daily life? How did these changes affect you? What specific changes did you implement?

What treatment options did and do you have now?

What are some of the side affects of the treatment options?

How has crohn's affected you mentally and physically?

How exactly does Crohns affect your body day to day? How do you normally feel?
Hi, Wyatt. Here are my answers for you!

1) Extreme intermittent abdominal pain (an episode every few weeks), some blood in stool. I had frequent milder stomach pains for about seven years prior. I wasn't hospitalized. However, I began losing weight rapidly just before I was diagnosed. If that had continued and they hadn't found the cause, they would have hospitalized me and put in a feeding tube.

2) It was recommended that I keep a food journal and cut out anything that I noticed to upset my stomach, but that's all. My doctor took care to phrase things in a way that made it obvious she expected me to live a normal life once I began treatment and got my disease under control.

3) I started on Prednisone, then began 6-MP. I couldn't swallow pills, so I switched from the 6-MP to methotrexate, which I gave myself a weekly injection of. I took that until I lost my medical insurance, then was started on Pentasa after I regained it. Had no luck with the Pentasa; going to see my GI next week about trying something else.

4) Prednisone has many side effects. Most people have increased appetite, maybe some trouble falling asleep, moon face and weight gain. I had extreme insomnia until the point that I began hallucinating, increased appetite, and I definitely looked like a chipmunk. I had to take a year off school because of the Pred (my junior year of high school, actually). My side effects were more severe than is typical, though. With the other medications, I noticed no side effects.

5) Well, it hurts, haha. I'm fatigued fairly often. Physically, I may have to take things a little slower than most people. Mentally, it gets to me sometimes. When that happens, I just take a little time out until I'm good. I know it's more difficult for some people, but I spent a long time showing symptoms and everyone told me, "You're making it up." My mother didn't believe me, so the doctors didn't either. Being diagnosed was proof that there really was something wrong - and it meant that they could help me. It was easier for me to be told, "You have a chronic illness; you can't be cured" than to keep hearing, "You're making it up, there's nothing wrong with you." Unfortunately, this is something a lot of us have faced.

6) I normally feel pretty tired. Most days, I have mild stomach pains or nausea, especially after eating. When I wake up in the mornings, my stomach is sore, sometimes my back as well. Every once in a while, I have severe stomach pains and have to make frequent trips to the bathroom. Sometimes, I have mild joint pain. My biggest problem is the fatigue - it's absolutely overwhelming at times. The more tired I get, the worse my other symptoms are.

I hope that helps.
__________________


Sarah.
Diagnosed with Crohn's disease 12/6/08.
Have taken: Prednisone, 6mp, methotrexate, Pentasa.
Currently waiting for a new medication!

Check out the Crohn's forum chat!

12-04-2012, 10:52 PM   #15
tots
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Hey Wyatt-

What a disease to pick!

Severe cramps and diarrhea and weight loss led to my eventual diagnosis. Although I experienced symptoms in early childhood I was never diagnosed. I ended up in the hospital for 9 days.

My diet changed drastically. No salads, fruits, most vegetables. Oatmeal. Cherrios, granola, popcorn. Basically if its good and healthy for you, its very painful for me!
My nutrition is horrible. I watched my diet very carefully and learned what my triggers
are. And do my best to stay away from them.

Initally my Dr gave me a prescription for prednisone. His quote "this drug is as bad as the disease. Good luck with it! " The list of my current medication is listed below.

Prednisone-(just finished 4 week course) weight gain, depression, feeling of well being.
Entocort- (steroid just for IBD) makes me a little shakey the first few weeks.
Remicade-a biologic- cant explain that one to well. 80% human protein and 20% mouse protein. Gives you a higher risk of some cancers.

Physically during a "flare" I get severe cramps and diarrhea, kinda hard when your at work
I get tired (not really sleepy) faster. Nothing better than sitting straight up in bed at say 2 am with UNBELIEVABLE pain. Last time I developed Iritis in both eyes, again painful and can lead to blindness if left untreated.

Mentally- because people can't "see" whats wrong. Sometimes its hard for them to understand your disease. You expext that from strangers. Sadly oftentimes its those
that are closest to you. For me its my husband and mom. My husband resents me when we have to change plans at the last minute. He feels as if I am not doing "my fair share"
when I am not feeling well. If this study teaches you anything- let it be compassion for things you can't see.

In between my flares I can feel pretty normal. I still will have a bad episode every once in awhile if I eat something bad. Because I can't eat nutritiously- I really don't feel 100%on a day to day basis. I just found out my Vit D level is 18- shouldnt be below 18 and can be as high as 100. Its those types of things people with Crohns live with everyday.

I hope I answered these qustions well enough. It is such an individual disease you are likely to read many different things on our forum. Its very much the same and yet very different.


Good luck,

lauren
__________________


Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!


Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


:
12-04-2012, 10:52 PM   #16
tots
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Hey Wyatt-

What a disease to pick!

Severe cramps and diarrhea and weight loss led to my eventual diagnosis. Although I experienced symptoms in early childhood I was never diagnosed. I ended up in the hospital for 9 days.

My diet changed drastically. No salads, fruits, most vegetables. Oatmeal. Cherrios, granola, popcorn. Basically if its good and healthy for you, its very painful for me!
My nutrition is horrible. I watched my diet very carefully and learned what my triggers
are. And do my best to stay away from them.

Initally my Dr gave me a prescription for prednisone. His quote "this drug is as bad as the disease. Good luck with it! " The list of my current medication is listed below.

Prednisone-(just finished 4 week course) weight gain, depression, feeling of well being.
Entocort- (steroid just for IBD) makes me a little shakey the first few weeks.
Remicade-a biologic- cant explain that one to well. 80% human protein and 20% mouse protein. Gives you a higher risk of some cancers.

Physically during a "flare" I get severe cramps and diarrhea, kinda hard when your at work
I get tired (not really sleepy) faster. Nothing better than sitting straight up in bed at say 2 am with UNBELIEVABLE pain. Last time I developed Iritis in both eyes, again painful and can lead to blindness if left untreated.

Mentally- because people can't "see" whats wrong. Sometimes its hard for them to understand your disease. You expext that from strangers. Sadly oftentimes its those
that are closest to you. For me its my husband and mom. My husband resents me when we have to change plans at the last minute. He feels as if I am not doing "my fair share"
when I am not feeling well. If this study teaches you anything- let it be compassion for things you can't see.

In between my flares I can feel pretty normal. I still will have a bad episode every once in awhile if I eat something bad. Because I can't eat nutritiously- I really don't feel 100%on a day to day basis. I just found out my Vit D level is 18- shouldnt be below 18 and can be as high as 100. Its those types of things people with Crohns live with everyday.

I hope I answered these qustions well enough. It is such an individual disease you are likely to read many different things on our forum. Its very much the same and yet very different.


Good luck,

lauren
12-05-2012, 07:09 PM   #17
wdris6
 
Join Date: Dec 2012
Are there any support groups, volunteer opportunities, or other things of that nature that you guys would recommend to get a better understanding of Crohn's?
12-05-2012, 08:32 PM   #18
Susan2
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In Australia we have a National Crohn's and Colitis Asociation and each State has its own Branch. They hold Forums and other events, produce a very informative magazine and lobby.
12-05-2012, 11:20 PM   #19
wdris6
 
Join Date: Dec 2012
Thank you, I've contacted the Northern California branch and will hopefully hear back soon!
12-06-2012, 09:16 PM   #20
Avw
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Location: Lafayette, Louisiana

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You couldn't pick a better time to be researching Crohn's, this is the second annual Nation Crohn's and Colitis Awareness Week! Tons of information to be found right now. Great to hear about non-patients getting involved. Thank you for your curiosity and support!
__________________
Diagnosed with CD in 2004 at age 18.

Previous Medications:
Every oral medication,
Remicade,
Humira,
Cimzia, etc..

Currently Taking:
LDN 3 mg
VSL #3
Prednisone 10 mg
Flagyl 1000 mg
Entocort
Protonix
Xanax as needed

Insurance still rejecting appeals for Stem Cell Transplant. Tested positive for JCV Antibody so Tysabri is not an option. Searching for matches in Cord Blood Registry and working with an attorney to fight insurance company. Fingers and toes crossed!
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