Hi, I'm Lisa

[Lisa.H]

So is this where I stand and say, “Hi, my name is Lisa and I was diagnosed back in 2007?” And everyone waves and says, "Hi Lisa!" lol

Well, let’s see, where to start? Back in 2007 it dawned on me one day that I couldn’t remember the last “normal” stool I had. I shrugged it off since I was too busy to worry about my BMs. Sure, I had cramping too but I was a busy wife, mother and Office Manager for a product development company. So I just sucked it up and went on with my life as best as I could.

Then the blood started and that was a bit of a wake-up call that something was not right. It started off just a little here and there and then increased to the point where I could have easily filled a Dixie cup with nothing but blood. That freaked me out but at that time my husband was traveling a lot and I have 2 kids that have busier schedules than I do. So I told myself, “I would keep an eye on it.” I thought if I maybe tweaked my diet, it would get better. My husband got back into the country and I figured it was about time I shared with him what I had been experiencing over the last 4-6 months.

Needless to say I was in my doctor’s office that week. My family doctor put me in touch with a GI Specialist and they scheduled me for a colonoscopy. That’s when I found out I had Crohn’s and Ulcerative Colitis. I was dumb founded since I never heard of either of those before and they were attached to the word, “incurable.” Talk about a sinking feeling.

I had a follow up with my specialist so I though I’d get some answers and beat this thing. My husband went with me with a pad of paper with a list of questions to educate ourselves on how to get this under control. We asked what triggers it, what causes it, what can I change in my diet, could I use something natural instead of being on meds, etc. Her answer was pretty much the same for every question. … “each person is different, so I really don’t know.” It was a heavy blow when she continued with: “What you have is incurable and you will have to be on meds for the rest of your life. Also, there’s no guarantee the meds will even work for you.” *gulp* Oh wee. I left none the wiser and now felt downtrodden.

Up until a few weeks ago, I was at least tolerating it. I even had the bleeding mostly under control. I then had a massive flare up that resulted in even more health issues. Go figure, I ended up with grade 4 hemorrhoids because of the chronic D. Bleeding started again with a vengeance and I had all the symptoms of being anemic on top of it. Lovely. I stayed in bed (or the bathroom) for 2 days after that.

Maybe I’m stubborn… or stupid… but since I feel no confidence in my “specialist,” I did not go back to see her. As of now, I almost have myself back to where I was before the flare up. I also believe I know what caused it, so of everything I have read, that’s half the battle to know what to avoid.

The reason I’m here now is I just want my life back. My husband wants me back. I love to snowboard but I have not been able to since I didn’t want to be up on the mountain and then… you know. I also use to bike 20+ miles before this and now am afraid to even take the dogs for a walk with the family. Maybe I can learn something that I haven’t already discovered. I’m leery of taking meds since the side effects seem to be worse then what I already have.

Here’s what I’m taking now: Daily multi-vitamin, L-Glutamine & Probiotic

Thanks and this feels like TMI to me! ha ha

 

[farm]

Welcome Lisa!!!:bigwave:
I don't think there is such a thing as TMI on this forum.

 

[violetcreams]

Hi Lisa!! He's right!

 

[Lisa.H]

Thanks ) Ha ha, I have gathered that. This is something I don't discuss with many people. I feel bad for my mom because I think she's the only one who knows all the lovely details! lol

 

[imisspopcorn]

:welcome: Lisa

The meds and their side effects can be frightening. On the forum, there are many stories about the side effects, some make you laugh, some scare the bejebbers out of you!

I have had this disease for 12 years. I have been medicated the entire time, except when I stopped taking meds because I wanted to get pregnant....With out the meds my symptoms escalate rapidly.

I had surgery 2 years ago....I was so sick, I wanted to die. I am not trying to scare you, but keeping this disease under control with medicine is much better in my opinion, than under going surgery every 5-6 years....

I am currently on Remicade and feeling the best I have in so many years. All though I am not totally symptom free, my quality of life is near normal. Please consider going back to a GI, at least become acquainted with one. If you get really sick, you will have someone there who can help you....

Good luck, I hope to see you around here.

 

[farm]

You had surgery 12 years ago??

 

[imisspopcorn]

No 2 years ago....I fixed it!

 

[farm]

Thanks ) Ha ha, I have gathered that. This is something I don't discuss with many people. I feel bad for my mom because I think she's the only one who knows all the lovely details! lol

I've kinda learned to share the details with whoever will listen. You poor guys! LOL
That is one of the many reasons I love it here.

 

[Jennjenn]

Welcome

 

[Lisa.H]

imisspopcorn: Thanks for the info. I did find another discussion group a few months back and some of the people on meds seemed to be just as bad as I was without any meds.

I actually did try them for a month in the beginning and they did nothing for me. I know, I know, I wasn't on them long enough. My thinking at the time though was if I'm spending this type of money, I better feel great! lol I couldn't see spending $100 a week on something that wasn't even guaranteed to work. I don't recall the name of it off-hand but it was so expensive even with my insurance.

 

[farm]

Well Lisa I believe SOMETHING works for everyone, you just have that journey to find it. I wish you the best of luck.

 

[imisspopcorn]

Mainly, just see a New GI....You can check the CCFA websites for doctors in your area who are memebers. Also the Rate M.D. sites have good info when people use them.....I just don't want you to get reeally ill and end up at the ER and not have someone to follow up with....

 

[Peaches]

:welcome: Lisa! Well...I'm in IMP's camp in that I believe without some type of medication (the RIGHT one) you run the risk of having chronic active disease which almost always over time leads to scarring which in many cases leads to the need to surgically remove that section as it ends up narrowing to the point you can become blocked. That is just the cold hard truth. Unless you have a super mild case (which it doesn't sound like) - this will probably be the situation you are placing yourself in letting the disease have its way with your body. Or, even worse - you could end up needing emergency surgery like me for a bowel perforation!! Not good......

Many GI's start with the least side effect causing medications which also tend to be the least effective at treating our disease. Some people get better on them (Pentasa, Asacol for example - and yes - they can be expensive and you have to take a LOT of pills), but many do not. They didn't help me - they actually caused my disease to become worse (a percentage of people worsen on the 5ASA class of drugs - yay! I'm one of them).

The trick is to get friendly with a GI that you can *trust* and that you feel will listen to you. That GI wasn't really telling a lie about not knowing what will or won't work for you - we are ALL different with the way the disease process is and what meds work for each of us and what food we can eat. Honestly - I've had this disease a long time - and when I joined this forum - that was the most suprising thing to figure out - that we are all so *different*!! It certainly makes this disease harder for doctors to manage I'm guessing.

I see you mentioned that you have Crohn's and UC? I have never heard of anyone having both I don't think. Maybe you might need to think about going to a different GI just to get a second opinion? And I would at least *try* the medications again for a length of time. Hang out here and we'll help you through. Hopefully they can find one that will work and will allow you to get on that snowboard again!!!

 

[Nyx]

Welcome Lisa! I have to agree with everyone else here, you need to get on top of this! I too had alot of bleeding (so much that I fainted and was admitted to hospital and given a blood transfusion). That's when I was diagnosed with Crohn's. I was on prednisone and Pentasa to get it under control...and it took a while for them to work. Eventually the Pentasa stopped working and I was put on Imuran, which worked very well until I perforated my sigmoid colon and distended my bowel (btw, never ignore constipation that lasts longer than a few days...when this happened it had been 7 days since I had a BM)....lol It's never ending it seems! But, now that I've had surgery I'm feeling about 400x better. It's kind of sucky that I'm going to be pooping in a bag for the rest of my life, but my quality of life has gone up tenfold.

I hope you get this under control, get a new GI if you have to. It's important.

Cindy

 

[Rob]

Welcome aboard

hope ya find the info ya need one here too help

 

[Misty-Eyed]

Hi Lisa,

Maybe just try to remember that everyone is different and not everyone has the same side effects from one drug. There are some that I've not had many from at all but have helped me lots. There are also ALOT of drugs out there these days, so if one doesn't suit you, another one may be able to help more.

Also try not to get scared from reading some people's stories and thinking that's what will happen to you because everyone's disease is different and people can have very different experiences. It's just important to take things one day at a time but to look after yourself as best you can and if that means taking drugs, then at least give it a go? You may be very pleasantly surprised at the results and may feel more like yourself before you know it.

Like everyone said, I think it is very important to find a GI that you feel comfortable with. There are some really supportive and understanding ones out there!

 

[kenny]

I hope this is not a downer but even if you feel you are in remission without meds and feeling great, you need to have a scope once a year. Being diagnosed with an IBD puts you at high risk for colon cancer and early detection is the best(and only) way for us to fight that monkey.

I am on Immune suppression therapy for the foreseeable future. Hopefully by this time next year If I am still symptom free, and no crazy Medusa thing going on inside) I can come off it and manage with diet control. But in the mean time I am ok with the meds. I find no issue so far and the added risk of cancer is nothing compared to the added risk just because I have a IBD and family history.

on the drug cost. I think the Levaquin antibiotic was a killer for me. If I remember right that stuff cost me around $100 after the medical plan discount of 80%. I was surprised at how cheep Imuran is for what it does though. But I guess since they have been using it for organ transplants and such since the 70's the cost has come way way down.

 

[Astra]

Hi Lisa!
Firstly, you leave your dignity on the doorstep on this forum, there's no such thing as TMI!
Yes I second everything that everyone has said instead of repeating it all!
A word of warning tho, I became complacent and stopped taking my Pentasa, and didnt take my Budesonide reguarly, became totally blase about the whole thing!
As a result, I ended up in hospital for a week with a near perforated bowel, blockages, scarring , D & V etc etc
Give Pentasa a go, it helps to maintain a healthy gut and keeps any swelling down, and keep a watchful eye on constipation cos thats when the shit will hit the fan! so to speak!
Besta luck
Joan xx

 

[fenway1971]

Hi Lisa!
Welcome. This forum is great...no such thing as TMI.

Keep taking maintenance drugs even if you feel ok. When I was first diagnosed, I took them for about 6 months, felt better then a few years later...WHAM! I then had to take more powerful drugs just to get me back under control. I got religion and take my meds every day. And I'm Mr. Anti-Pharmaceutical Guy.

 

[Crohn's 35]

Hi Lisa I can see you are fitting on here nicely. Welcome to the forum.. so much information, venting and friendly bunch to support you.

Most people say you can't have UC and CD together... Well my older sister has both and is a major bleeder. I dont bleed I have CD. My older brother has UC and a younger brother with IBS and a younger sister with IBS and GERD. Needless to say we all have something including both uncles on my mom's side with IBD and one uncle died of intestinal cancer at 49. My mother is 74 and not a damn thing wrong with her, has never been on medication. The IBD is running pretty rampant in our family and there are grandchildren and great grandchildren 19 all together one great neice has something...

Gene's, bacterial infections, stress alot of things can bring it on. I had two resections and my sister did too, she has the worse Crohns the doctors had seen.

No one really knows where and why it starts. Being on meds is something we are always on, because it can come back 10fold. I am on high probiotics, and Pentasa and Entocort until my gi appt next week to figure out what is next.

I have a wonderful husband too and we both had to alter our life styles but I still try and stay positive. Been symptomatic for 35 years and dx 17. You will get alot of support here, nothing is sacred around here. You have a good sense of humour never let go of that, it gets you through the rough times!

Keep us updated,,, sorry for babbling!!

 

[Lisa.H]

Thanks everyone for the info. I can see this is a very comfortable place to let it all hang out.... well, not ALL, but you know.

Wow Jetta! Your poor family! Hope there are enough bathrooms at family reunions! What's odd is no one else in my family has this. (fortunately for them) When I first told my mom, her reaction was, "You have huh? .... say that again."

My doc did make a comment about saying how "lucky" I was to have both. Ummmm, this is NOT my idea of luck and that is one person I won't be taking to Vegas!

Fenway - I'm pretty anti-drugs, so this is tough for me to change my thinking. I've been scary healthy all my life, until this.

I will be honest that I get sick just THINKING about another colonoscopy. The stuff I had to drink made me vomit. I could only drink about 1/4 of what they gave me and that took hours and hours. Take a sip... puke... repeat 145 times. Oh yeah, and the people that named it... "GoLytely." ... That's a sick sense of humor right there.