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Crohn's Disease Forum » Your Story » Hi, I'm Derek - And new to this lifestyle. Here is my story.


12-23-2012, 10:12 PM   #1
Dereksmagic
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Hi, I'm Derek - And new to this lifestyle. Here is my story.

Hi everyone, I am Derek, 26 years old, and live in Orange County, CA. I am a magician entertainer up at the Magic Castle in Hollywood by night, and I am a project manager for one of the cooperate offices of The Home Depot during the day.

Just got out of the hospitable after 31 days. And was told that I have Crohn's. Please excuse my spelling and grammar as I am very highly medicated right now just getting out of the hospital as well as on painkillers.

So, Here is my story of the last month of my life. Hopefully I wont make this too too long of a read.

I first originally noticed that I had a problem because there was blood in my stool for about 4 months. I let it go because I was on a major diet and doing intense weightlifting, Heavyweight training barbell squats and whatnot, I was originally pushing 240 lbs and 6 foot tall. Lost some weight and got down to about 210, and started the weightlifting. So for these months it got worse and worse, More blood in the stool, and finally I said something to my GF and mother, and was taken to an urgent care to see if I had maybe a Hemroid. After the exam he said there were no signs of hemroids, and that I needed to have a colonoscopy. So I went to a GI. and had one done. The results showed that I had Colitis. only in the lower 4-6 inches and it was not that bad. so I was put on a liquid rectal cortozol, and lialda for medication, and a low-fiber diet. This did not seem to stop the bleeding, so I was switched to to prednisone. 3 Months went by, and I ended up feeling like crap though the entire time, and caught the flue, didnt eat for 4 days, couldn't hold anything down, and was miserable. My parents and gf ended up taking me to the hospital, and putting me on fluids due to the dehydration, they then admitted me and got me all hooked up. We got in touch with a new GI and told him what my issues were and he set me up for another colonoscopy. (at this point they had me on so many drugs and painkillers because I was having cramping in my stomach so bad I was screaming in tears) They had me on 2mg of "dilated?" every 4 hours with 7.5/325 percocets inbetween just to manage the pain... after this point it had been a few days in the hospital, and you kinda start to loose track of the days, time, how long etc, so my time frames might be off a little, but ill get the main points across. So come to find out my colitis turned into full blow chrohs which had spread from the very bottom of my insides, all the up my asophus up my throte and into my mouth, the entire thing was eaten up, I had sores all over my mouth to the point where I couldnt swallow or eat. At this point they had put a "pick line?" in me and started to feed me though a tpn bag. along with all the other bags that were hanging on that pump machine.

So I stayed in the hospital and my parents and friends and gf were always crying and I didnt really understand why. Well come to find out from my gf (15 days later) that the doctor told them I only had week to live because my system was completely shut down due to the server auto immune and the flu, I didnt know this the entire time, Well.. obviously I didn't die, but then they were told that I was going to be transferred to ceader hospital so they can remove part of my insides, and I would have to wear a bag on the outside of my body (again, I didnt know any of this at the time, as the doc advised my family to keep me in the dark to minimize stress on myself)

-Im going to try and speed this up.

Well... That didnt happen either, we ended up putting me on Humira injections, and I started to get to the point where I was eating solid foods, was released from the hospital, went home for 3 days, had a fever of 103.00 the entire time, went back to the hospital, got readmitted for another 8 days, found out it was do to some sort of internal infection or something and had me on antibiotics.

Now im back at home again after 7 days. And have no clue what I can and can not eat, They tell me to eat low fiber beacuse of my crohns being so bad, and also my blood sugar is an issue so low carb, No wheat, No oats, No fruit, No veggies, and I was told to eat a lot of white carbs for my GI track, But then was told NOT to each whites because of my blood sugar (I forgot what im taking that affecting my bloodsugar right now)

Im cramping constantly, stools are liquid, up until about 2 days ago, and now they are more.. muddy? I dont know what word to use, and im dropping like 6 pain killers a day just to manage the pain in my stomach, and I get stuck on the toilet with the worst cramps in the world.

Im pretty lost, dont know what to do, what to eat, its only day 7 back and home, and iv been taking it very easy trying not to over stress myself, I seem to get dizzy and light headed when i get up. so rest is key at this point while im recovering from the hospital.

Anyway. That's my intro..

Im sure ill be asking questions here and there as things arise.

-Derek
12-23-2012, 10:55 PM   #2
araceli
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Hi Derek. You have been thru a lot. But I am glad you are better than they expected. Call your Doctor and ask him what you can eat. You will find what food make you sick. It will take some time for the meds to work at their fullest, but if you still feel bad go back to your GI. what work for some does not for others. I really hope you feel better soon. Best wishes, and hang in there, It will get better.
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dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
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Prior. Prednisone, sulfasadine,
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12-24-2012, 12:15 AM   #3
prplkow
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Wow, you have been through the ringer...and a fighter at that! Glad to see you made it through. I just wanted to comment on the diet part. I have issues with low blood sugar and when I had to go on the "low residue diet" with low fiber, no uncooked veggies, but lots of "white" carbs like rice and white bread, I freaked out because I knew those things plus no fiber, no protein was going to make my sugar drop. I had boiled chicken and really soft boiled carrots too with my white rice. I also use protein powder. I add it to my plain corn chex, or just by itself with some soy milk. That is pretty much what I lived on during the worst of my flare. The bad thing about Crohn's though is what works for one person, doesn't for another. Start slow and keep a food journal so you know what foods bother you. Hope you start feeling better.
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~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
August 2012 - CD in the terminal ileum
June 2012 - CD in the cecum and rectum
GERD
TAHBSO - 2008
Endometriosis
Moderate Sleep Apnea
Moderate to severe restless limb syndrome
Childhood Asthma
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Also taking Vitamin D3 and B12 among others
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12-24-2012, 12:50 AM   #4
Hope345
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I am so sorry to hear all that you have been through.
Now that you know have Crohns, it will help you to know what needs to be done.
When it comes to food, especially since you are in a full flare, they recommend bland foods with very low fiber. A lot of people go on an all liquid diet which you can find on this site, to give your intestines/colon a rest.

Im glad you have a GI that will guide you with your treatments for Crohns.
This site is going to be of such value to you as well.
WE are all here to give you the support you need.
please keep us informed of how you are doing.
take care
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Daughter (age 17) diagnosed with Crohns Colitis/UC 1/2012 Mod/severe changed to U.C.: 11/7/2014 anemia:blood transfusion current: Flare, weaning from Prednisone, still bloating: Meds ,Pentesa: 2000mg twice daily, Vegan diet, mesalamine enemas .Previous: mercaptopurine, Remicade (13 treatments), Imuran, prednisone ), Flagyl, iron infusions, cortifoam,
Continue to be hopeful
Daughter: age 21, undiagnosed: GI issues
12-24-2012, 02:03 AM   #5
Dereksmagic
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Any regards to raw sushi? my neighbor is a sushi person and can get the freshest quality stuff. pure sashimi, I was told no white rice due to the sugar issue. I was also told no dairy either beause of the flair, and it could be upsetting to my stomach.

Basicly as of right now, until adjustments are made, I seem to only be able to eat meat, Fish and eggs.

As far as the sushi, I am a bit worried about my suppressed immune system, but my neightbor is litteraly going to get me the fish at 5am striaght from the place where most sushi places pick their stuff up at. But I am a freak about my sushi, Tuna, Yellowtail and salmon. I hope to go im going to be ok eating this stuff.

Its weird, I have had so many mixed signals before I got out of the hospital from my GI, the nurses, and the nutrition person that spoke with me, all 3 of them had conflicting answers to what I should be eating.

Just on a side note.. What symptoms should I be noticing when I eat something.. and is it a right away thing? or the next day, cramping? the amount of times you go? Im not really sure what to be looking out for, because of right now it seems to not matter what I eat, my stomach cramps up all the time, and I get stuck on the toilet with cramps at least 2 times throughout the day and night. My pain and uncomfortable bowl moments have been the same thoughout my hospital stay until now, so I dont really have a point of reference to go off of on what I should be feeling to go "oh, Maybe I shouldn't eat that again"

Any advice on what to look out for specifically? I feel there is no real answer to this so I understand if no one can really reply to my question.
12-24-2012, 02:57 AM   #6
acheallova
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Hi Derek, welcome to the community. Keep in mind we are here for support, encouragement and guidance.
There are different meal plans you can look up to follow, I've been trying the Paleo diet ( caveman diet) as it is no dairy ( big no no) so almond/rice milk, salmon, pheasant, wild game and seafood. No carbonation or caffeine as it can cause issues, especially if you have ulcers.
What, if any, other meds have they put you on? Are they treating you with a PPI like nexium® , protonix®, or prevacid®?
For the first 5 months i did an all liquid diet- jello, broth, gatorade ( to stay hydrated). Some do camomile or peppermint tea to calm the tummy. Ginger helps with nausea symptoms.
If most foods disagree with you, you will know within 5-30 minutes,; however, we are all different so it may vary. Some it takes up to a day.
There are a couple of apps, if you have a phone or tablet, which are helpful for your symptoms and food diary-- docs diet diary and GI monitor, which documents pain, stress, food intake, meds, bm's, and blood content. These may be helpful. Best wishes on your getting to feel better. Thoughts and prayers.
Keep us posted on how you get along. Good luck!! -hugs-
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12-24-2012, 03:13 AM   #7
helena101
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Oops, sorry, sent the same post twice...

Last edited by helena101; 12-24-2012 at 03:47 AM.
12-24-2012, 03:14 AM   #8
helena101
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Hi Derek... I'm sorry to hear about all you've been through. Maybe I can offer some help re: introducing more foods to your diet.
After doing Elemental Nutrition for a month I built up my diet in the following way. (BTW I am not necessarily advising you to do an elemental diet, but I think the method of food testing that followed could be useful to you).
First keep a food diary, where you record everything you eat, and all your symptoms. Whenever you have pain write it down, rate it on a scale of 1-10, and record its approximate duration. Write down whenever you have a bowel movement and its consistency and degree of urgency.
I agree, this whole process would be easier if you were feeling well, because it would be easier to tell if a food is bothering you or not. But keeping records like this should help you notice if there is any worsening trend...
For me, when I introduced foods, I would eat the new food in a medium quantity twice a day for 4 days. Sometimes it's hard to tell after just eating a food once whether it agrees with you or not, all the more so if you have pain and diarrhea anyway. But over the course of 4 days you should get an idea, if the pain gets worse or you have more frequent or looser BMs, the food should be avoided. If this starts to happen before you get to the 4th day, you should stop eating the food in question. I don't know if that helps at all... Good luck!

Last edited by helena101; 12-24-2012 at 03:50 AM.
12-24-2012, 03:46 AM   #9
nativesith
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You ave been through soo much. I prey for you and send you all I can give in my support.
Eating for me is a tough issue as well. Most days I feel I can not handle anything until afternoon/evening. When the pain is bad honestly even trying broth seems hard. But when I can eat I notice chicken agrees with me more than any other meat. Steamed/boiled carrots. Mash potatoes. Herbal Teas(blueberry, raspberry,camomile, peppermint, licorice). Real Fruit Juices(no artificial flavor with sugar)Rice. Broth. Soups. Gatorade. Salt(I do not just like eat salt. I increased how much I use for help with daiherra,sorry about my spelling) .
I stay away from pasta(spaghetti,lasagne,etc.). Beef and tomato paste makes me worse.I also stay away from sugar and caffeine.
I too have used a lot of pain killers in dealing with this, some thing I am trying to cut down on. Some days I feel it is the ONLY option.
Relax and see what works for you, take your time.
Merry Christmas, preying for our well being.
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12-24-2012, 08:28 AM   #10
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I think you have to be careful not to cut out too much food too suddenly, because you need to keep your weight up and get in enough nutrients. This is especially important with this disease because an acute episode can lead to weight loss, so it's good to have some weight to spare.

As has been said already, what foods can and can't be tolerated is different for different people. Too much fibre makes my symptoms worse (causes me to have more severe diarhoea) - but the reaction is delayed by a day or two, so it took me a long time of trial and error to work that out. There are some foods that quite commonly make digestive symptoms worse - lots of people have problems with dairy or gluten, for example, though I can eat those with no problems. And things like alcohol and very spicy or rich foods can be hard on the digestive system. Some foods are easily tolerated, like white rice and bananas. I'm not sure how those work when you're dealing with blood sugar problems too though.

It does sound like your doctors are confusing the situation by giving you different advice. Maybe you could ask to see a dietician? Would meal-replacement supplements be useful for you? (They're like milkshakes but with added vitamins and minerals to give you everything you need, you can get them at chemists or from a doctor. I find them really useful when I don't feel like eating but need the calories.)

I would say be careful not to cut out too many foods all at once, and if you get a symptom after eating, don't assume it's the result of one particular food. I'm like you and have symptoms constantly, especially after eating, so just because I feel bad after a meal it doesn't mean that one particular food is to blame. This meant that elimination diets didn't really work for me. Usually it's just coinidence that I got a symptom after eating, or it's the result of eating in general and any food would have made me feel ill. It's when a food consistently produces symptoms that you can tell it's a problem food for you.
12-24-2012, 06:57 PM   #11
Dereksmagic
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Thank you for all the support and warm wishes from everyone. I will get on here and really start to peek around and research, But as of right now I do have one question. My gf is going to swing by the store and pick up a few things for me, so is there anything people can recommend that will help keep my system mellow?

Right now i have peppermint and chamomile tea on the list, as well as some ginger, is there any other small things like this that I can have her pick up that will kinda sooth my symptoms (I know everyone is different) but I am hoping that maybe there are 1 or 2 other things I can add in now to bring the pain / flair / cramping / inflammation down.
12-24-2012, 07:14 PM   #12
Dereksmagic
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I already have lost so much weight. I went from 206 to 180ish. Ill have to find my scale. I was on the TPN bag when I got weighed in 180's, not sure how much I have put back on since I started eating again..
12-24-2012, 11:36 PM   #13
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Derek,
Learning to eat again can be tough, just remember- eat very small amounts frequently throughout the day. Helps to not overwhelm the colon. Hope all goes well for you and you start gaining your weight back. -hugs-
12-24-2012, 11:47 PM   #14
Hope345
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Just saw your message, Our doctor recommends Ensure. she said you can actually live on 3-4 of those a day. Might be worth a try.
did I already mention, removing lactose from your diet for a while?

Here is a site from a mom who believes she is able to control her sons Crohns by removing lactose: http://www.cureforcrohns.co.uk/feedback.php
Interesting theory.

for pain: Sitz baths and Heating pad or hot water bottle.

take care
12-26-2012, 07:37 AM   #15
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What a grueling story - I wouldn't wish that upon anyone. Wishing you the best of luck with recovery!
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12-31-2012, 01:43 AM   #16
acheallova
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Ensure/boost are both good. At least one a day helps us get some of our nutrients, but 3-4 is survivable alone or added in with frequent small meals/snacks. Best of luck! -hugs-
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