Crohn's Disease

[tinkerbell_xo]

Hi everyone!

I was diagnosed with Crohn's disease about a year and a half ago and I've suffered from GI issues my whole life.
Today has been a "bad day" . I've been looking for message boards and places I can read about people's experiences but I can't find any good ones.
I've read some posts on here about Disers and Crohn's so I thought I'd start a thread.

I'm just curious how it affects other people. Where do you all work? Does it affect your career? How often do you have flare ups?
What triggers it?
I just want to hear people's stories.

I usually have "bad days" once a week or once every 2 weeks.
Stress is the worst trigger! When I get worried or nervous or really upset I'm sick for a couple days.
I work in retail. I currently work full time at one store and part time at another. I have NEVER called in sick, but that's purely because I need the income, there have been MANY days I would have loved to stay home.
I take pentasa/salofalk 3 pills, 3 times a day.

 

[kimmie]

So sorry to hear about your Crohn's. DH was told last summer that he has Crohn's. He lost quite a bit of weight, and the DR thought it was diabetes. While going for his colonostomy (sp), they found the Crohn's. He has not lost any more weight, but still has trouble keeping it on! He takes Asacol 3x
per day. That is the most expensive medicine! Insurance only covers a small portion, and there isn't a generic! It does work pretty well for him, but he still has flare ups. They really can't say what a trigger would be. If you keep a food diary you may see a pattern. With him it tends to be fruit with skin and raw vegetables and peanut M & M's! There is a website crohnsandme dot com that has some information, but we are still looking for more. According to the DR, there are so many different things that trigger a flare up. It is different for each person.

I know when he is having a bad day, if you know what I mean. He travels for work and he has been able to "manage" it, but it is not easy.


Check out that website!

 

[fluffycow333]

I've had Chrone's for about 10 (?) years now. I am lucky that I rarely get flare-ups but when it happened in the past it seemed totally random. I did end up having to have my colon removed last spring and I am doing amazingly well. I'm in school so it doesn't effect my career but I missed the majority of the school year last year before having my surgery. I am currently on Imuran. I hope you feel better soon and find a medication that works.

ETA What causes one person to get sick may be fine for someone else. There is no "Chrone's diet"

 

[Inigo]

I was diagnosed in August 1991 with CD, 8 months after the "Pregnancy From Hell" ended. The pregnancy was totally worth it because we got DD, but it was rough. I was sick the entire pregnancy, and got really tired of hearing the doctor say it was just morning sickness. No...I'd been pregnant before, I knew this was something else and something bad. After DD was born, and I was still sick, the doctors finally started to look for answers. After many ER visits for non-stop vomiting, a surgeon in the ER said he thought I had crohn's and he was operating the next morning. He was right.

18 years later, I've had two more abdominal surgeries and have lost a few feet of my small intestine. My CD is primarily in my small intestine, although I do have extra-intestinal manifestations. I tend to get obstructions, and get constipated. I'm on remicade every 7-8 weeks, 6-mp (immunosuppressives), arthritis medications, and vitamins. Remission is great, even if I have to take tons of drugs to stay there.

Anyway, a good board is the IBD Sucks board at http://qurlyjoe.bu.edu/webx?, full of others with this "lovely" (read that as &^%^%&^%&^%&*) disease. Lots of tips and support.

My next surgery is to fix the humongous hernia that developed at the site of three abdominal surgeries.

 

[merryweather20]

I was diagnosed in August 1991 with CD, 8 months after the "Pregnancy From Hell" ended. The pregnancy was totally worth it because we got DD, but it was rough. I was sick the entire pregnancy, and got really tired of hearing the doctor say it was just morning sickness. No...I'd been pregnant before, I knew this was something else and something bad. After DD was born, and I was still sick, the doctors finally started to look for answers. After many ER visits for non-stop vomiting, a surgeon in the ER said he thought I had crohn's and he was operating the next morning. He was right.

18 years later, I've had two more abdominal surgeries and have lost a few feet of my small intestine. My CD is primarily in my small intestine, although I do have extra-intestinal manifestations. I tend to get obstructions, and get constipated. I'm on remicade every 7-8 weeks, 6-mp (immunosuppressives), arthritis medications, and vitamins. Remission is great, even if I have to take tons of drugs to stay there.

Anyway, a good board is the IBD Sucks board at http://qurlyjoe.bu.edu/webx?, full of others with this "lovely" (read that as &^%^%&^%&^%&*) disease. Lots of tips and support.

My next surgery is to fix the humongous hernia that developed at the site of three abdominal surgeries.

If you want to really frighten Kimmie post what Remicaid costs before insurance

 

[kimmie]

I totally think you will have me beat on cost! lol

I don't complain too much on the cost because I know this is the least expensive alternative for crohn's!

I keep telling DH to take his medicine or else!

I know it sounds kinda gross, but do more people have vomiting or diarrhea?
Also, what age were you?
DH is 51 which is why the dr suspected diabetes. He told us that most people are diagnosed in their teens or early adluthood. I think DH was losing all of his nutrition, hence the blood sugar problem. He was always tired too!

 

[HappyDznyCamper]

If you want to really frighten Kimmie post what Remicaid costs before insurance

Remicaid may be expensive, but for the 2 people I know with Crohn's it has been remarkable. The first is my 13 year old neighbor, he was diagnosed just about a year ago and since starting the remicaid he has had no problems with flair ups and put all the weight he lost(and them sum, but he is a teenager) back on. He is at my house after school and the only real change we have made is that popcorn is no longer the main after school snack. The other is a another teacher at the preschool I work at, she is just starting with remicaid because nothing else was working for her and she was missing a lot of work. So far she has not missed any more days because of crohn's, but she has only had 2 treatments so far.

 

[LittleDino]

I recommend reading "The Maker's Diet" by Jordan Rubin. He almost lost his life to Crohn's but was able to turn his life around just by changing his diet. Worth a try. I do not have Crohn's but do have Type 1 Diabetes, Celiac and Hashimoto's... the diet changes recommended in the book have been beneficial to me.

 

[tinkerbell_xo]

I totally think you will have me beat on cost! lol

I don't complain too much on the cost because I know this is the least expensive alternative for crohn's!

I keep telling DH to take his medicine or else!

I know it sounds kinda gross, but do more people have vomiting or diarrhea?
Also, what age were you?
DH is 51 which is why the dr suspected diabetes. He told us that most people are diagnosed in their teens or early adluthood. I think DH was losing all of his nutrition, hence the blood sugar problem. He was always tired too!

I've never vomitted due to Crohn's, so definitely more of the OTHER for me ahah
And I'm 22, I was diagnosed when I was 21.
And if it wasn't for my DBF I don't think I would be diagnosed at all!
I thought everyone had the same issues as me. I assumed sometimes people were healthy and sometimes they were sick, and my going to the bathroom 6+ times a day was nothing to worry about!
He told me getting up during meals and numerous times throughout the night was definitely not normal, not to mention the incredible pain I was in.
So he forced me to go see a doctor.
After multiple tests and providing my doc with stool samples (not fun here we are feeling incredibly sick and weak and what does the doctor want us to do? blaahhhh gross!) she sent me to a specialist and I had a colonoscopy, which showed the Crohn's.
I was worried about the procedure but oh my God it was a breeze. The PREP! AHHH!! I dread the day I have to go through that again.
Oh, and after the colonoscopy he wanted to check my stomach too so he stuck another camera down my throat and took a biopsy. At that point the drugs were wearing off and I was gagging and sweating. It was awful.

Most days are good! And thankfully my bosses understand and don't mind if I spend the majority of some shifts running back and forth to the washroom.

I was curious if anyone's Crohn's has caused them to quit their jobs.

 

[merryweather20]

Remicaid may be expensive, but for the 2 people I know with Crohn's it has been remarkable. The first is my 13 year old neighbor, he was diagnosed just about a year ago and since starting the remicaid he has had no problems with flair ups and put all the weight he lost(and them sum, but he is a teenager) back on. He is at my house after school and the only real change we have made is that popcorn is no longer the main after school snack. The other is a another teacher at the preschool I work at, she is just starting with remicaid because nothing else was working for her and she was missing a lot of work. So far she has not missed any more days because of crohn's, but she has only had 2 treatments so far.

Its worth every penny for me too. I take it for Arthritis, and I actually popped in to read this thread because most of the other patients at my infusions are there for Crohn's. Alot of success stories, but thats to be expected because they're still on it .

For me it was life or death, I was out sick 3 days a week, because I literally couldn't make it out of bed. Even when I was in the office I was too weak to pick up my phone, as in literally it would ring and I would just stare at it. Absolutely worth it!

 

[amberg@eastlink.ca]

ive had colitis for the past 16years. i cant believe its been that long. stress is my trigger! and after a horrible year with some losses last year, ive been in a flare since june- thats when it was starting, not too bad, really was managable. as of the week before xmas, all those usualy sympotms started again...im back on all my old meds, imuran, predisone, and am trying peppermint oil pills ala nautral route. figured it coulndt hurt!

im a sahm now but did work retail for 10 years and the last 1.5 years were the worst. i worked witha jerk who harrassed any woman he worked with and always got away with it! thankfully when pg with dd i was put off due to all the stress and some issues with the pregnancy.


recently i have once again had to leave guiding due to it : ( i miss my girls, but my health and my kids must come first. when i only havean eppisode it lasts about a day and then i need a few for extra sleep. dh is great cus he knows if i get run down we'll all end up paying for it with momma in the bathroom for the week. sicne xmas i have been miserable. not fun. in the middle of that last sentance i had to run to the washroom again! lol

im hoping i can get it under control soon so it doesnt interfere with disney! oh and there is a thread on here a few months old by now, on ibd's. theres also the crohns and colitis page of canada on fb. if you're on there!

 

[daughter_of_amid_chaos]

There are suspicions that I may have Crohn's as I have all the symptoms but "only" ulcerative colitis showed up on my colonoscopy. I take Lialda for my colitis and it has worked well unless I eat a trigger food.
I also have Celiac Disease so I have many trigger foods to watch out for.

 

[M5ward]

My daughter (now38) was diagnosed with Crohn's several years ago.
For a couple of years prior to being diagnosed, she had intestinal problems in the fall but was never properly managed medically. When she finally was diagnosed, it was during what turned out to be a three week long hospitalization. They had her on more medications than we could keep up with but she just kept getting worse. Just when we thought that surgery was imminent, the doctors ordered a Remicade infusion followed by IV cyclosporine. After her release from the hospital, she had two more Remicade infusions. She currently takes about 12 pills a day - Asacol and Imuran. The only insurance issue she has had has been with the lab that processes her periodic blood work to test Imuran levels. There was no problem with the Remicade although I have heard that some insurers won't pay for the infusions.
To date she has had one relatively minor flare up..the doctor immediately put her on Flagyl and was able to avert a more serious flare. At that point there was some discussion about Remicade infusions to maintain the remission, but she responded quickly to the Flagyl, so she didn't have to do that. She knows that at the first hint of a flare up she has to call the doctor immediately.
And, yes, Crohn's is certainly exacerbated by stress. The doctor prescribed Xanax to combat the stress when needed. It's a really ugly disease.

 

[Inigo]

I always think Remicade should tingle or have some magical feeling to it as it goes in, especially considering the cost! It is an expensive drug, but there are ways to help with the costs. There's a patient help program offered from the manufacturer for those without insurance.

For me, I have good insurance, but my co-pay was to be $1200 per infusion, until I paid $5,000 out of pocket in a year. I couldn't afford that. Who could? My doctor wrote me a prescription so I could get it using my insurance pharmacy benefits and pay just the usual co-pay: then $25 a refill, now $35 a refill. I just have to remember to order my refill a week before my infusion since the pharmacy doesn't keep it in stock. (You'd think they would after all these years, but they don't since it's so expensive.)

I take it in a little cooler to the office, where he had one of his nurses administer it in one of the examining rooms, and I'd just pay a $30 office visit co-pay. Now, they have quite a few patients who get their infusions in the office.

At first, we were just going to have me fill the prescription, and then take it to the infusion center, but none of the infusion centers would allow me to bring in the medicine myself for liability reasons. I guess they thought I would adulterate it in some way, and they didn't want to be responsible.

I love getting my infusions this way. I love Mary, my Remi nurse; Linda, the NP who comes in to talk and always does the stick; Louanne, the secretary; my doctor, and just about everyone in the office. He's been my doctor since right after I was diagnosed, and I willingly drive 1 1/2 hours to stay with this practice even after we moved.

I've had close to 50 infusions over the years, and it's still working.

 

[Inigo]

I forgot to say, I was 25 when diagnosed, but had been sick at times as a child, but didn't get taken to a doctor for it. I would always get sick with certain foods, and as a Crohnnie, figured out those are the foods that set off flares or blockages for me.

Between the time DD was born and before they figured out which meds worked for me, I lost a lot of weight. I got down to very thin, and was put on a medical retirement from work as I was so bad. The Asacol worked for a while, as did other meds, but not as well as the Remi/6-mp combination.

My flares usually are nausea and vomiting, although there are diarrhea incidents too. I always kept a spare set of unders, socks, and pants in my car, just in case. When I go to a doctor and they ask if my BMs are normal, I always laugh and tell them I have no idea what that means. I haven't been "normal" that way in many, many years.

 

[Aimeedyan]

I post regularly on www.healingwell.com - they have a board just for Crohn's disease. I've gotten so much help, info, and support there. You should check it out! It's moderated well so you don't have to worry about spam, inappropriate posts, or some of the bickering that goes on other sites.

I was diagnosed 6 years ago while in graduate school. Remicade was started immediately and AMAZING. I lived symptom free for 2 years until I started to reject it. Threw me into the hospital for a few weeks to get under control and then we tried Humira. Again, symptom free for 2.5 years until I started to reject that. With biologicals, it's very common to build antibodies to the drug after awhile.

My disease was more out of control than we realized, I was pushing through the symptoms I was having and didn't know how much damage was going on. We tried Cimzia - one of the newest biologicals on the market - but after 3 months realized it wasn't going to do the trick so I saw a surgeon.

I am 2 weeks post-op from a pretty major surgery as there was more damage than originally thought. For 6 years, I fought against surgery but now that I'm on the other side of it I know it was the right decision.

We'll be moving to a maintenance drug now and my GI thinks I could see years of remission now.

I work FT. There are some people with Crohns that have gotten disability but it was a long process and they are truly unable to work at all with their disease. I got behind 1 semester in graduate school but otherwise finished and work more than FT many weeks. I have good and bad days but when my meds are working, I am mostly symptom free. Of course when I'm flaring, which I was from June-February of this year I struggle a lot more. I'm thankful to have a fantastic and flexible job that allows me to take off if needed. And, I relied on Vicodin to get through a lot of things I had to do.

Crohns is a very individual disease. I don't have the main stereotypical symptom (diarrhea) but have others. Food does not directly affect my disease unless it's obstruction related but stress is my primary trigger. Because of that, I see no need to go on some special diet but instead need to focus on reducing my stress levels. Others find the opposite to be true. It's really fascinating to me.

 

[LoveBeingSAHM]

I was diagnosed in 2000 but we know that I have had it since at least 1997 and maybe longer.

I have all the normal symptons plus pyroderma gangrenosum - really really bad and painful skin ulcers. My biggest problem is that I CANNOT take prednisone anymore when I have a flare. The last time I took it in 2004 I gained over 100lbs in just under 3 months, had high BP, high blood sugar, was losing my hair and the skin around my fingers, loss muscle strength in my legs, developed osteopenia, and more.

I have been on REmicade since Nov 2004 - SAVED MY LIFE!! I stopped when I got pregnant in 2006 but by my 20th week was was flaring so bad that the only choices I had was to take my Remicade IV's or lose the baby. Guess what I did - REMICADE. Thank goodness he is fine. It is a very very expenive drug - I go every 7 weeks for my IV and it cost over $16,000 each time. Thank god for insurance! I have to pay $1000 a year and that is it - that's enough for us since I stay home with our kids so we are only one income. I tried Humaria but it did not work for me so the Dr put me back on Remi - I hope it keeps working for me cuz I do not know what I will do if it stops working!!!

I also take 150mg of Imuran but after many years have been able to wean off my other meds.

I love the disboards and never thought there would be a Crohn's board - I love it!

 

[Inigo]

When I was at the doctor's getting my Remicade yesterday, I noticed a brochure about a rebate program for those who have to pay more than $50 out of pocket for an infusion. All of you who do so should check with your doctors or infusion centers to see if they can get you the information.

I have to pay $35 for the prescription (from a retail pharmacy) and $35.16 (what a weird amount--16 cents for iv tubing!) for my office copay and share of the supplies, so I plan to take advantage of it.

 

[Aimeedyan]

When I was at the doctor's getting my Remicade yesterday, I noticed a brochure about a rebate program for those who have to pay more than $50 out of pocket for an infusion. All of you who do so should check with your doctors or infusion centers to see if they can get you the information.

I have to pay $35 for the prescription (from a retail pharmacy) and $35.16 (what a weird amount--16 cents for iv tubing!) for my office copay and share of the supplies, so I plan to take advantage of it.

When I was on it, I applied for that Remicade assistance. Actually got it for Humira and Cimzia, too. They aren't any income eligibility requirements - if you have health ins, it helps to make your portion even cheaper.

My Remicade costs varied greatly depending on what GI I was seeing. If I received it in the hospital, it was $$$. I had to pay 20% of the total bill ($900~ each time!). In the doctors office, they charged me copay plus RX cost so it was MUCH cheaper ($80).

I just went on the drug website and applied and they mailed me a card to use.