Introduction:
I am 31 years old, mommy of two lovely girls. Diagnosed about 6+ yrs ago. I love cooking and spending time with my babies, boyfriend and family. Going to the beach is cool…assuming there is a toilet nearby ;) I live near Detroit, MI with my boyfriend, two daughters, dog and three cats.
My Symptoms:
I am currently in a flare. Just left hospital last week..severely dehydrated and anemic. Pooping like crazy, lots of bleeding too. Now that I am home, my symptoms have improved a bit, not as much frequency, but man, when I have to go! It’s like, right now. I am so tired and achy all the time. My joints and muscles are constantly on fire, sore, stiff, fatigued. Everything I do feels like a big chore. Simple things just take the wind out of me. I have difficulty sleeping, partly because I am so sore, but also because I am getting up 5 or so times in the night for the toilet. Yay!
My Story:
It’s difficult to remember what my life was like before this f’d up disease changed my world. People have said that I used to be a free spirit, so carefree and upbeat. I’d like to think I am still that person, but feeling crappy all of the time makes it difficult. Although I haven’t lost my sense of humor. Laughter gets me through the day, at times. But depression eventually sets in and it can be easy to develop a ‘woe is me’ attitude. Why is this happening to me? What have I done wrong? When is it going to end?
I feel anxious, irritated and unsettled most of the time. Anxious about where the nearest bathroom is…will there be a line? Will there be that idiot who makes a smirky comment at my explosive BM? So embarrassing. So the best solution during a flare? Stay home, with the safety of your toilet and a change of clothes nearby.
SO it all seemed to begin in 2006, just after my second daughter was born. I had a pretty enjoyable pregnancy, felt a bit more tired than the first time around, but managed just fine. I suffered from extremely painful hemorrhoids after the baby was born and eventually had a hemorrhoidectomy since I couldn’t sit n my bottom. It was so painful. Add to that the chronic diarrhea, and voila! I got a blood infection. I was in ICU for about a week, getting blood transfusions, IV antibiotics and god knows what else…it was awful. And they told me I have UC…I had no idea what that meant. I eventually got better, and…
I’ve pretty much had a flare every year to year and a half since then. Since 2006. Some have been short and easily controlled. Others have left me bed ridden for months, unable to walk, take care of myself, my children. Absolutely devastating being a formerly active Mommy of two wonderful loving girls, and not being able to pick them up for a cuddle. :( Now that the kids are older, they’ve come to understand what ‘Mommy is sick” means. They take good care of me. I’m so fortunate to be surrounded by so much love…including my wonderful boyfriend, who is so understanding, patient and sweet about it all. I’m not sure he knew what he was getting into when we started dating almost two yrs ago, but he’s really been supportive, and I am so grateful to have him in my life.
The thing I worry about the most in the future is being in the same boat I’ve been in…or worse! Colon cancer? Toxic mega colon? Yanking my colon out? I’ve always tried to avoid taking medications…Prednisone is evil evil evil. Asacol comes out the same way it went in. Colazol doesn’t help much either. Imuran made me deathly ill (bed ridden 5 months.) C-diff was pretty bad…both times! Vancomyacin helped with that eventually, but I took it for months and it made me so nauseous. I have been to chiropractors, acupuncturists, yoga, naturopaths…and have found that holistic healing is the best route. But this flare came out of nowhere land and I am a bit confused about it. Maybe I was becoming too lax on all of my diet and supplement needs.
I’m also worried my kids are going to inherit this nightmare disease. I wouldn’t wish this on anyone.
I want to ask the UC ladies out there…does anyone have issues with their periods? Has your cycle changed? I’m wondering if UC has an effect on this area as well.
Where I’d like to be in 1 year:
In a year, I’d like to be able to take the dog for a walk and not be worried I’m gonna poop on someones lawn, or pass out from exhaustion. I’d like to be able to go on field trips with my kids, on the bus! And not have to starve myself for 24 hours in advance to avoid poopong my pants. I’d like to go on that planned trip to the Philippines with my boyfriend, that we had to cancel because of this flare up.
Colitis Medications:
I haven’t had much luck with meds.
Prednisone- nasty mood swings. Severe swelling of body, mostly legs, feet ankles. I have stretch marks on my feet to prove it.
Asacol- ends up in the toilet.
Colazol- not much improvement.
Imuran- horrifying to even think about.
I have had the most scary, frustrating side effects from so many of these medications, and to me…it’s just not worth it.
submitted in the colitis venting area
I am 31 years old, mommy of two lovely girls. Diagnosed about 6+ yrs ago. I love cooking and spending time with my babies, boyfriend and family. Going to the beach is cool…assuming there is a toilet nearby ;) I live near Detroit, MI with my boyfriend, two daughters, dog and three cats.
I can relate to your story so well! I too have have two children and was diagnosed 2009 when my daughter was 9 months old and it’s been a crazy, frustrating road since then. I have only been in remission for for only 6 months since being diagnosed and now I’m currently in flare as well (stress related). I really miss the days of just going to the store with out feeling nervous about having to run to the bathroom. I don’t know if your doctor has talked to you about remicade? I am currently on it and it has made my UC so less severe and it was what had put me into remission before. If you haven’t talked to your doctor about it you should, personally I think it’s worth a try. Thank you for sharing your story, it’s good to know I’m not alone in my struggle to try to continue to live a normal life like I did before and I hope the best for you and your family.
Hi, Have you considered surgery so you don’t have to go through this anymore. I am a mom of one 4 year old girl. I got sick when she was 18M old. I understand the cancelling of trips and being sick often. I was sick for 2 years straight, unable to work and finally had the surgery. You’ll never get better if you continue to work. You have to let your body rest and take care of yourself. I have an ostomy. Opted for the surgery after 2 years of struggling. I am happy and healthy now and wouldn’t ever look back. If you ever want to talk about surgery or have questions for me, I’d be glad to help. I am 32 years old and can finally think about another child. I am energetic and living my life without limits now. I love it. My email is jeaninemaclean@hotmail.com if you have any questions. Take care : ) J
I most definitely have had smirks when coming out of the bathroom! The worst ever was way before I was diagnosed and I had to give a business presentation in front of a large group of women. I was so nervous that right before I had to use the bathroom and had explosive diarrhea in a bathroom with just curtains for doors! There were 2 other women in there with me and to my horror they were part of my group. It was awful, I wanted to crawl out of there but actually got through it and left quickly afterwards. People who have never had any experience with UC or Chrohns just don’t understand and can be judgmental. I wish there was more education out there for people so that they can stop looking down on people that can’t help what happens to our bodies. Hang in there, god bless.
Hi Richelle-
Sorry you are in a flare, me too after a year of remission! This is my first flare and thankfully not having all the joint pain and complete exhaustion like first time. I actually suffer from constipation, almost never have diarrhea. But when I am flaring every BM feels like 5-6 hrs of childbirth… woah! Even when I feel great, when I gotta go, I have about 30 seconds to make it happen. So YES I always know where the toilet is!! And I have had accidents but I just laugh because what else can you do.
So- for me I was slacking on a clean diet (eating too many desserts and a few glasses of wine) and not handling my stress! Looking back it was a few months in the making so I figure it will be a few months for repair. Luckily, I have been able to stay drug-free the last two years- Vit D, gluten alcohol sugar free, lots of nourishing foods, NO COFFEE (sad face) and I am feeling pretty good again.
I have two boys 11 and 13 and they def know the difference between sick Mom and healthy Mom but they can totally handle it. I have not had my menstrual cycle since Feb 2010- so I think my body is still in survival and not reproductive mode. I am sure I’ll be a crazy cougar when it does return… Ha!
It’s a crazy disease but don’t let it get you down. You are so blessed to have loving people around you, just make sure you give yourself a lot of love too. I find I can be too hard on myself and it just makes everything worse.
I am a 39 year old urban hipster… I still want to be cute and date and have fun and it is crazy that I have this disease that makes me feel like such an old lady! I am sure you understand. Hang in there!
BTW- I like this homeopathic inflammation cream “Topricin”- it is a bit pricey but awesome and lasts a very long time.
Allison
Allison,
Yeah, I feel like an ‘old lady’ too. My mind is always on the move but my body can’t keep up. So, I push myself too much and end up in misery afterwards. I quit drinking over a year ago, it wasn’t doing me any good, quit smoking cigs recently, but I still indulge in the occasional dessert and cup(s) ;) of coffee. Everything in moderation? Maybe moderation doesn’t apply to “our” delicate guts, but I guess I just don’t want beat myself up if I have a coffee or a soda.
I’ll be back on track soon, I know it. Thanks for the kind words :)
Best,
Richele :)
In response to Jeanine,
No, I have not considered surgery. I’m not ready to give up on my lovely poop chute just yet! ;)
I do have a GI appointment today. I’m nervous. I, like so many others have not responded well to medications and I feel like the GI is a dead end street. Ahh well…maybe I’ll get a colonoscopy appointment and at least get it all checked out.
:) R
Oh boy, Richele, do I ever feel you!
I have not ever been able to tolerate any of the meds for this disease either. Luckily, I managed to get med free and attain remission from probiotics. How long this will last is really anybody’s guess.
I laughed when you said you are worried about walking your dog and pooping on someone’s lawn…lol…would your dog pick it up for you with a lttle plastic baggy??? Sorry…you set that one right up for me! Seriously, tho, I wasn’t laughing when you tell of how this f’n disease changed your life. And how, right? I was like you, optimistic and upbeat. Ready for anything! In my old life, that is. I still really try to be that person, but I should not have to try. Having UC made me do a complete 360.
I am also not quite ready to give up my colon. However, I do not want to ever take any of the meds again. I am crossing my fingers so hard that I can stay in remission. It’s so wondeful to be there and I am so afraid to lose it.
I really feel for you. Everything you said is me, and alot of other UCers out there. When the hell are we going to get a break?
Hi Richelle. I hope you are feeling better soon!! Flares are the worst. Your strength through this is inspiring. You want to keep your colon, and are going to do it in a healthy way, like Adam. I had no choice but to get my colon out, it was literally killing me. I could lament about not knowing enough about dietary/herbal remedies soon enough (shoulda, woulda, coulda, yada, yada, yada), but here I am, the colon-less wonder. I hope that you experience remission soon, like tomorrow. Hang in there, u r one fierce mama!!