Introduction:
I am 46 on Sunday, and have UC, pancolitis. I have had tummy issues all my life, hated being thin. Tons of test and was always told it was just to much acid, did all the meds and nothing worked. My family thought it was an eating disorder and would push food. I hated to eat! Two years ago I lost 25 lbs in a few weeks, I cried every time I ate and my family still thought it was an eating disorder. When last fall the pain was so bad I made a Doctor visit the next day.I was told I had colitis and was told not to stop the meds when I felt better. I have IBD with UC/pancolitis.The Meds started and haven’t stopped. The last one was Imuran and it was terrible! I just wonder what kind of hell is next. I really hate how tired I am, I can doze off and on all day and even though I want to do something I can’t. There are times I watch TV and it’s just sad to see what “normal” people do.I fill like I view life through a sliding door I can’t open and soooo want to.
Symptoms:
Poo all the time, tired and sad.
I try really hard to eat well and do what I can but the hard days get you down.
I’m tired…I cry…I pray…I put on a happy face around my kids…I hate this! I let it go at times and say it is was it is and then I freak out. I HATE being paper thin, I HATE leaving the house and all the meds, doctor visits, blood test etc. My Husband is the best! He is the kindest person ever and always tells me how great I look and how much he loves me. He makes jokes about missed toilet issues and doesn’t seem to care, he has even held up his coat on road trips when I had to stop on the side of the road. I see his pain and it’s hard you almost want to hid how bad it is to save those that you love. My parents and kids read up on things and are great as well. I don’t mind colonoscopys because it calms things down for a few days. I even asked my GI Doctor what it was like to talk about poo all day…it’s his living and my life. I really don’t like my Gi Doctor because he tells it like it is at first it was harsh but now I understand…it is harsh and there aren’t any answers. I’m concerned about this never ending!
Unlike most, I want my colon out
so I get my life back and stop the med cycle!
I hate meds and the troubles they cause. I can live without my colon but not my liver. The Doctor told me, “good luck with that”. They tell you to listen to your body and yet they don’t hear you. It’s all a protocol when it comes to insurance and medications. HATE the system!
Where I’d Like to Be in a Year:
More energy and a peace with what I have forever
Colitis Medications:
NONE, Imuran was really bad!
written by Kim
I have had tummy issues all my life, hated being thin.
Kim!!
OMG!! You sound just like how I feel!!!
I hate the meds, and the trouble they cause, too. I could not have said it better myself. I believe that more and more of we UCers are getting very tired of accepting meds from our doctors. The meds that don’t seem to help, but only seem to hinder.
I am so glad that I refused the prednisone, the remicade, and the imuran! You said the imuran was terrible! I knew it,. When I was told that I should try it, and that it was an immune suppressor, I said…are you kidding me? Why would I ever want to suppress my immune system?! I was then told, because your immune system is overactive, thus the UC.
I just stopped taking the asacol taht I have been on for 13 years, after starting probiotics. I am feeling great! No symptoms of UC…please read my posts. I am so anti-drug, it’s almost ridiculous! I know taht I got UC from taking accutane, for acne, in the 90’s. Not long after that wonderful drug, I was diagnosed with this lovely lifelong disease. Needless to say, I was, and am, pissed off.
Drugs are horrible things. Plain and simple They have destroyed my life. Well, not anymore.
Cheers my friend..I wish we could all have a mind of our own whren it comes to our health and our bodies and what we are willing to put into our bodies…because we DO have a mind of our own!!
Bev:)
I’m not finished, appartently!
What you said about life passing you by, and everyone else seems to be enjoying it…I KNOW!! I have felt like that more times than I can remember. Watching tv, shows and commercials, it seems like those people aren’t constantly thinking about their UC, like we always are. It seems so unfair.
I have the best husband too. He always thinks I’m pretty…even tho I know that 13 years of this disease has made me look 25 years older. I don’t ever wear tight jeans or shirts anymore, because altho I’m thin, I look like crap. Bloated ltlle belly. Stooping shouldery posture, from being beaten down by this disease and all of the drugs. You know, it is said that drugs age us, just like smoking and drinking do. NOT FAIR!!
My doctor says…do what you want to do, it’s your body…but, like you said, he rolls his eyes when I won’t comply. He does not hear me, or maybe he’s just too busy, and it isonly his JOB, after all. He goes home at night and lives his life.
I don’t know you, Kim, but I really like you a whole lot girl! We think very much the same. Put on a happy face…I seem to do an awful lot of that, for sure! An awful lot…
I dare not ever tell my doc that I’m feeling down, or depressed (which I sometimes, but not always, do). He’d try and put me on some antidepressant I’m sure. Duh…why do you think I’m depressed…maybe 13 years of constant worry and thinking about the UC?! Could that maybe be the reason? Sheesh…
Take care, Kim…and PLEASE keep on posting…you speak for alot of us!
Bev xoxo
Hi Bev,
I just had another colonoscopy and there were significant cell changes so back on prednisone tapper and sulfasalazine. Just started today, here we go again. I can go about 3 weeks without meds but then things start getting ugle. I hope it works for you!! I’ve been really watching what I eat and have noticed that one day I can eat something just fine and the next time it will bother me. For my Birthday I wanted to have some spicy mexican food my husband wouldn’t take me but my daughter did (yea). I had the hottest thing they have which is really hot and was fine, then I had a turkey sandwich which is a go to food and got really sick. Where abouts are you from in Canada? I’ve been to BC several times and Loved it! My family and I went to the Worlds fair in 1986. The country is beautiful and the people are so nice. I’m from Colorado. Thanks for all your positive words…I’m glad you have a good hubby as well. I have to laugh sometimes, I have had several brest lumps removed and so on top of being ugle thin my chest looks like a road map, I have mamograms every 6 months now and the last one was removed about a month ago. I told the Doctor they could just take them both off and I’ll get tatoos of tits and go topless. I was the only one that thought it was funny…it was funny! I have my GYN doctors “watching” me, my GP doctor is “watching” me with the weight and general health, my GI doctor is “watching” me…feels like I should just set up cameras around the house and they can all watch. Either that or I want to be able to pay 1 copay and see all of them at the same time. Your so right I think you do age fast, I use all kinds of creams and I still feel so dry, I drink tons of water and just can’t seem to get enough. My Mom and Daughter and her girls are together a lot and people think my Mom and I are sisters…I look like the older sister. I’m glad I was never into the whole make up pretty girl thing. I’ve always been a bit of a tom boy, love to camp and fish and pee outside…ha! My Mom and daughter are more alike. Dressing up means blue jeans without holes. When Mike and I got married my Mom made me get a dress but I didn’t wear shoes…because she said no to teva’s. I hope your feeling good right now! I’m OK. I really think it’s important to share. Let me know how the no meds goes. You can e mail me at kachartier69@gmail.com. Have a good weekend. Kim
Kim!
Hi girl!
I am in Penticton, BC, about 4 hours southeast of Vancouver. It is a beautiful place to live, this BC of ours! Mine is a tourist town, with two gorgeous lakes, one at each end, so we fill up to five times our capacity in July and August. The rest of the year, it’s like a beautiful ghost town. It suits me just fine!
I get what you said about the food. When I was flaring, I could eat something, and it would be fine, and a week later, the same thing would set me off to the bathroom, fast. Stupid disease…
Yep, those good hubbys…you gotta have those! Funny how you mention your chest…’my’ UC affects my skin with ugly raging zits! All over my chest, back, and face. Sometimes, I look absolutely horrible, yet, the old man doesn’t even seem to see it. What a guy…maybe these guys did all go to the ‘Caring for UCers’ camp when they were really young, and they just can’t remember. The counsellor erased their memories perhaps? Yep, that’s it.
I am devastated that you are on stronger ‘knock the colitis into submission’ meds again. They do help some of us, some of the time, but not always. I truly hope that they help you get over this freaking hump. You do not deserve this! Heck, none of us do.
I want to know why we all can’t have permanent remission. There has to be somethinng, and mark my words, it will be something so simple, and totally natural. Then, we’ll all be whistling dixie, as the saying goes!
You have a great weekend, too, my friend!
Cheers,
Bev
Hey Bev,
I don’t have a sister but you sound like we could be sisters! Sorry about the zits…I’m sure your hubby is right! He sees YOU! Your beautiful! Don’t ever forget that! Do you have kids? I have two my daughter will be 25 with two girls 4 and 2 and one due in july. My son is 28 and will be 29 in june with a 10 year old son. I almost burned our house down last night…my husband showered and I put a pizza in the oven, I told him and said it needed a few more min. 5 hours later I woke up to smoke filling the house. OMG, we won’t do that again! If I’m tired I don’t cook. I gave you my email lets keep in touch! BE WELL
Kim!
So sorry I haven’t replied back…
All is still so fabulous. I can’t believe probiotics could be doing this for me. I feel like I can’t get the past 13 years back, that I was stuck on asacol and feeling so awful in every way! Oh well…I’ve got the future!
As for kids…I have a son who will be 30 in Septiember! And, that darn son of mine made me one very young ‘grandmother’ (which I refuse to be called…it will be Nona, or nothing), last year, and he’s having a second child in June. So, yes, I have a kid, but now he’s a parent! Sheesh! He has not burned any houses down, as yet…lol!
You be well, too, my friend! Thanks for being so sunny!
Bev:)
Oops, Kim, I forgot to say…dressing up for me is jeans without holes, too!
Bev xoxo
Bev, can you tell us which probiotics you’re taking? :) Trish
Hi Trish,
I am taking one capsule per day. The probiotic is called ULTIMATE FLORA CRITICAL CARE by NEW LIFE. It has 50 billion active cultures. It is a mixture of probiotics for the gut. The clerk in the health store recommended it.
I am in Canada, but I’m sure they are sold in the US as well, if that’s where you are.
When I first started taking it, a month ago, I added in 6 acidopholus capsules per day as well (because that was the maximum dosage on that bottle), but I started feeling nauseated from them, so I stopped them after about a week. Now, I am only on that one CRITICAL CARE capsule per day!! That’s it!! I have completely STOPPED all UC meds. I was feeling so good, and having no symptoms, that I simply had to try. I can’t believe I’ve been off the meds for three weeks, and none of the UC symptoms have returned.
I am crossing my fingers that everything stays the way it is. These probiotics only cost $35 a month! Imagine that…instead of hundreds for the asacol.
UNBELIEVABLE!!!
Cheers for now,
Bev:)
Wow Bev, that’s enviable.
I tried very recently to go off the drugs. They made me really ill- to the point I couldn’t function, do anything, especially Sulfasalazine. My Rheumatologist said that he had nothing more to offer (that wasn’t worse for symptoms)I thought well, I will try to follow a careful diet, probiotics & try another supplement for immune & joint recovery. I made it for about 3 days & the bleeding/cramps came right back.
I’m back on the Asacol my GI doctor prescribed :(
It is inspiring to hear you have turned the corner. I hope it continues for you!
Hi Shirl,
I too was a single Mom and in college…not fun! You didn’t say if you are married now. Support does help! They should have a grown up camp for all of us. I bet the stories and laughter would keep everyone in tears! Isolation and depression is tough! Even before I knew what was going on it hurt so bad when my kids would go camping with my parents and I was at home, they are both grown with kids but you still miss out. Your right, I hope we all can open that door someday! :)
Shirl,
I forgot to ask you. I just started Sulfasalazine, how bad was it? I couldn’t do Asacol, I got terrible headaches. I was taking 9 pills a day and it took about a week for the headaches to stop after getting off it. Hope it works for you, just watch out for the headaches because once they start they don’t stop.
Hi Shirl…man, I hope that doesn’t happen to me. It’s been just over three weeks without any meds. Everything is great so far. I really can’t figure out why, because all I’ve done is literally take a probitic. Why on earth should that work? Now, I’m thinking that maybe flares just eventually end on their own? I kinda doubt that, because it’s never happened before, but I have no other explanation. My husband can’t believe it either. He thinks the asacol was actually hindering, and not helping. I was just crapping water and blood while I was on it. Until I added the probiotic. Now, it’s totally normal. So damn strange…I’m actually afraid that the symptoms will return…
If I feel those cramps coming back, I don’t know what I’ll do. I can’t go back on the asacol…I just can’t. I’m tired of taking it and it doing nothing but cost me a fortune.
Anyway, that’s all I can say about what’s happening to me at the moment. I want so badly for it to last forever. I can’t figure out why this has happened to me, and why it can’t happen for everyone. It’s too good to be true. I feel like crying, and laughing, all at the same time…and I do…
Cheers,
Bev:)
Hugs to you Kim. I hear ya. I started getting ill at age 12 (I am now 36 with a proper diagnosis). I can relate: the doctors, the tests…the meds. I had many people think I was anorexic when I lost considerable weight. I went from being a slightly overweight kid to a rail. My weight has been up & down my whole life (more clearly what I would say is flare & remission). I was eventually in college- and a single mom, trying Imodium AD to get through exams, with little success…and at one point became dehydrated & had kidney problems.
Just getting the diagnosis recently ending up in the hospital this past summer losing quite a bit of blood. It was at least good to have a diagnosis finally after all these years. Biopsies show 2 kinds of colitis. Your GI doc sounds like mine. I actually appreciate the up front approach now.
I haven’t had Imuran or Remicade. It’s certainly hard enough with just the UC. It is like watching life through a glass door, and the party is on the other side. I have turned down many outings and felt isolated, depressed for sure. It comes with the territory. How good of your husband, it makes a difference to have the support. I am thankful for that, and those who understand….
We all manage the best we can with it, and it is different what works for each of us. I hope that you find yourself on the other side of the sliding door. I hope we all do :)
Hi Bev,
SO GLAD you doing well! Keep up the good work! I had three really bad days the first of the week. On the john, temp, and just plan sick. Felt better yesterday and went to the store today so all is well right now. Have a great weekend! Enjoy that grandbaby! They make everything better! I’m Gaga to the girls and Ma to my grandson. I don’t care what they call me as long as I get hugs and kisses. Keep up the good work and stay healthy!
You have a good long weekend, Kim.
I wish you were 100% dammit….I am going to send 100% vibes your way. okay?
Bev:)
Thanks Bev :)
Hi Kim!
How are you? Are you doing any better? I haven’t been on the site for way too long.
I am still med free, but bleeding again. Oh well, I say. If that’s all I have to put up with, I will. I had an iron infusion almost a month ago, and it seems like it did not help at all. Last time I had one, I felt way better. Not this time. I am exhausted. I guess I’ll find out when I get another blood test, but honestly, I don’t even want to go back to the doctor again. I’d almost rather not know. Nothing they can do for me helps at all.
I hope you are alright. This disease gets so freaking OLD. I am so tired of it.
Cheers,
Bev:)
I wish I had seen the program. I agree with you and not look for a vet that is cheap. I want the extra testing before surgery. I spend $ 250 for a neuter on my rottie. The vet even let me come in at the end of the surgery to watch. She is a Banfield vet, and I was the trainer. I saw what could happen if you don’t spay your female and they get the pyrometria (sp). Facinating stuff to watch. Luckily this dog survived.
I feel like you do about the drugs (and Bev). Thanks for posting :)