Written By:

Sarah – who has written 2 posts on Ulcerative Colitis Stories – Colitis Symptoms, Colitis Diet, Colitis Information.

I’m finally admitting I have UC. I was diagnosed in the Spring of 2009, right before finals (that I missed) during my Junior year in college at the University of Montana. After three ER visits, a one week hospitalization, Lialda, Mesalamine rectal suppositories, Entocort, (and some Hyoscyamine, Loperamide, and Loratab to ease the pain), a relapse a week later (2 weeks in the hospital this time), Prednisone, Lialda and 6MP, I am now (pretty much) symptom free. I just graduated from the University of Montana in May of 2010, I’m working as a freelance web designer, and I want to go OFF of Lialda and 6MP and live my life as a normal person. How do I do that? It’d be really nice if I could be drug free and act like I don’t have UC. But, I have UC. sarahegrant.com

I have asthma and recently it has been giving me some trouble. I have been put on Prednisone and am already using flovent and albuteral. does anyone have any homeopathic remedies that might help relieve some of my asthma symptoms?

live in a bubble.

I have had Crohn's disease for 7 years. we have wanted to start a family for years but I was constantly sick.The doctors kept reminding me that my clock is ticking (I'm 36). I recovered a little from a never ending flare up, after a miscarriage early this year and since then went off Prednisone completely. Now I am 7 weeks pregnant again. Since finding out I was pregnant I decided to stop taking mesalasine to give this baby a good healthy chance. I am currently feeling sick all the time with nausea, I am finding it very difficult but how can I tell if my symptoms are related to the pregnancy and not to my Crohn's. I am finding it hard to be happy about being pregnant when the symptoms are so similar to Crohn's. I am being being reminded by friends that this will pass after the 1st trimester…I really hope so. Has anyone else experience this while pregnant? thank you.

Background Information:

I am one of those people who took accutane for my cystic acne when I was 17. It worked wonders for the acne, but 3 years later when I was 20, I developed ulcerative colitis(UC). I don’t know if it caused it or not and likely never will. Another interesting thing regarding the onset of my colitis is antibiotic use. 7 or 8 months before I started developing symptoms that would later be diagnosed as UC, I had a very bad staph infection–on my face. I was injected with antibiotics and took them orally. I don’t know if it caused my UC but my poops were never the same after that assault on my system!

My Ulcerative Colitis Story:

So have had UC for 5 years now. Right now I am on tons of prednisone. Thanks to the extra energy afforded by the steroids, I was able to stay up into the wee hours of the morning watching Adam’s awesome videos. I don’t know why I’d never thought to search ‘ulcerative colitis‘ on youtube before, but I’m really glad I did.

I started having more and more mucus in my stools. I didn’t think much of it, it just an observation. as soon as I saw a little blood I called my family doctor. He put his finger in my butt and referred me to a GI doc for a colonoscopy. Soon came the excruciating pain, frequent diarrhea, and even more blood. I thought I was going to die waiting to find out what was wrong with me. I kept calling the GI doc and they moved up my appointment. I’m definitely a worry wart. The colonoscopy showed ulcerative proctitis (just the rectum as affected at that time). I was put on rowasa enemas and asacol. That worked great for about 3 months. next was cortenemas.

I didn’t like the original doctor I’d been referred to so I switched after seeing him for a few years. If anyone is reading this who doesn’t like their doctor, please look for a new one! My old doctor would take forever to return my calls. Anytime I had a little flare he wanted to do a sigmoidoscopy (with me a wake, it got really old). When I was stable I switched to another doctor recommended to me in another UC community on livejournal. I had an appointment with him when I wasn’t flaring just to meet him and get a treatment plan if I should flare. I liked him already. Then he told me he wanted to do blood work. He was appalled my other doctor had never done any blood work. I then fell in love with him (in an appropriate patient/doctor relationship way!). He seemed to proactive about my health. The blood work revealed I was a little anemic and his wonderful nurse taught me how to give myself B12 shots. I forgot to mention I was vegetarian at this time. The B12 shots gave me a lot of energy back.

So over 5 years I have so many UC stories to share, they wouldn’t all fit in here. I’ve been through tons of embarrassing things, things that would have destroyed me before I had UC, and am learning to move on. I went from never pooing in public restrooms, pooing in my own pants publicly, was hospitalized once, to proudly leaving my enemas out in the open for all to see during airport scans (you can have liquids on the plane as long as it’s medicine). I was afraid the airport security was going to take me into a room and use one to prove it was medicine, but it turns out no one messes with you when you when you are waving around something that has a ‘for rectal use only’ sticker.

I’ve never really had a good, long remission. 3 months at most usually. I’ve lost track of how many flares I’ve had. I’m tired of doctors telling me I will probably end up having to have surgery. Adam’s humor and delicious looking meals in his videos have inspired me to try the SCD. this afternoon I made a little smoothie and tonight I’m going to have some chicken soup. Thanks, Adam!

Past and Current Ulcerative Colitis Medication History:

I’ve been on lots of meds. I am still on asacol because if I try to stop or switch to something similar, the flares get worse. I’ve tried 6mp. I’ve tried Some Green Stuff that is illegal in the great state of Missouri where I live(works great for the pain but the idea of getting caught freaks me out too much). The most relief I had was when I started probiotics a year ago and stopped taking 6mp, and started exercising, a lot. I feel like 6mp makes my flares worse. My doctor says the next step is remicade and I’m not ready to go there.

As I mentioned, today I am on prednisone. for the last year for a flare I was doing cortenemas for a week or two and that cleared it up. I fell off my probiotics and exercise wagon and I restarted 6mp last month and I am starting to think having a suppressed immune system allows the flares to gain more power. but I’m not a doctor or a scientist. I wonder if anyone has any similar experiences with 6mp

Steph’s story is now entered into the 2011 Ulcerative Colitis Writing Contest!!!

I recently went to the doctor to get examined because I have been having trouble breathing (asthma runs in my family). he prescribed an inhaler, but it seemed to make my breathing worse – it felt like my throat was closing up. so I went back to the doctor, and he prescribed prednisone, and it seems to be getting a little better, but even he doesn't know what it is (he said it could possibly be hypervenalation). I'm mostly okay when I am sitting or standing, but when I lay down or try to sleep it gets very hard to breath & it feels like there is something in my throat & i can't get it out, and it kinda feels like my throat is closing up. Are these symptoms of asthma or hypervenalation?

Without seeing you and knowing more history, it sounds more like asthma than hyperventalation.

There are four different levels of asthma. Check the link below.

You might have an allergy to dust mites which could be infesting your entire bed, pillows, blankets, any carpeting and curtains near the bed..
Ask your doctor to have you tested for it.
An allergy can cause asthma symptoms.
If it comes up positive, you need to get a product called (or similar to) Mite Nix, which you have to wash all your bed clothes, curtains, etc. in. You'll also need to get a spray that you have to use on anything you can't throw in the washing machine.
To avoid further infestation, you'll need to buy mattress and pillow protectors that zip over your bedding.
The night after we washed everything in our bedroom, I was able to lay down and not wheeze at all. also, for the first time ever, I woke up without swollen eyes!

It definitely sounds like asthma to me; I experience the same problems when I lie down, and I have had asthma most of my life. It can be hard to get used to an inhaler; if the doctor hasn't given you a spacer, ask him to prescribe one for you. It makes using the inhaler a LOT easier. one of the hallmarks of hyperventilation is that most people experience a bit of tingling in the toes, fingers, and/or lips, so if you're not dealing with that, chances are very good that you have asthma.

I recommend going to see an allergist, as allergies often trigger asthma, and doctors who specialize in allergies are often very knowlegable about treating asthma as well. be persistent, and you CAN get it under control!

I am an Asthmatic and it doesn't sound like you have Asthma at all. to be completely honest it sounds as though you are having panic attacks, which I also have.
If your heart is also racing and you are sweating alot then you might be having some panic attacks, which you should talk to your doctor about.
Otherwise I agree with what others have said, you could possibly be having a reaction to dust mites.
You really need to talk to your doctor about it, and if you feel that they aren't listening to you then you need a second opinion.

I really wish you the best of luck, breathing problems can be really scary.