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Shadam
Regular Member


Date Joined Jan 2009
Total Posts : 307
   Posted 4/24/2009 8:01 PM (GMT -6)   
During easter weekend about 2 weeks ago I planned on going down south (about an hour) with the GF to visit her parents.  While we were driving, about 10 mins in I felt urgency, mainly because I was thinking about the hour car rdie and worried that something would happen; well it did.  I had to have the GF turn back around and stop at my work tp use the bathroom(thank god we were close by and the security guy let me in).  I then decided to go back home and rest the urgency issues off while she drove down to her parents for easter, without me. 
 
I never felt sooooo crushed and discouraged in my life.  I think it was the first time that I realized that this crappy disease is with me for the next 50+ years (if I live that long)!!! It's limited me from doing so much and the thing that bothers me the most is that I'm sooo young missing out on sooo much!!
 
I pray for a cure or for a drug that is a definitive treatment for all.
Age: 25 / Male / Florida
Diagnosed: 11/08 / Pancolitis
Asacol - 2 x 3 day (waiting for results)
Prednisone / ended 1/09 (started at 30mgs and tapered down)
Mens Multi Vitamin - 1 a day
Calcium & Vitamin D3 - 1200mc of Calcium and 800iu of Vitamin D3
Metamucil Wafers - Once a day
Jaro - Dophilus Probiotic (3.4 Billion) - 1 a day
Diagnosed with PSC: 3/9 --now taking Urso


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 4/24/2009 8:05 PM (GMT -6)   
Did you take any lomitil/bently/some anti-spasmodic before you left?
Proctitis DX 1999, Pancolitis DX 2008
Lialda 1 day
Immuran
Golimumab study (100mg every 4 weeks)
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD3+Ca/SuperDHA


Shadam
Regular Member


Date Joined Jan 2009
Total Posts : 307
   Posted 4/24/2009 8:10 PM (GMT -6)   
No, I've actually never heard of any of those...

Age: 25 / Male / Florida
Diagnosed: 11/08 / Pancolitis
Asacol - 2 x 3 day (waiting for results)
Prednisone / ended 1/09 (started at 30mgs and tapered down)
Mens Multi Vitamin - 1 a day
Calcium & Vitamin D3 - 1200mc of Calcium and 800iu of Vitamin D3
Metamucil Wafers - Once a day
Jaro - Dophilus Probiotic (3.4 Billion) - 1 a day
Diagnosed with PSC: 3/9 --now taking Urso


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 4/24/2009 8:17 PM (GMT -6)   
Let me just save you ALOT of worry/anxiety/embarrassment. Ask for either bently of lomitil from your GI. You always want to have it on hand. I keep lomitil. It's cheap, and I cut them in half when I get them (hard to do, btw since they are so small). A couple of hours before you are gonna hit the road to go on a trip take a half one. If your stomach is acting up take a whole one. I have taken two before going to the airport before, lol. It really quiets down the intestines down, and acts as a stress reliever too. If it's gonna be awhile before you can get some, go to the drugstore and get some of the immodium pills. That seems to work for alot of people here too, although I have never used them. I can get the lomitil cheaper than I can get the same amount of immodium. There has been a few time where they just haven't done it for me, but for the most part over the years they have been a wonderful friend.

No one even told me about this until I had the DD for a couple years.
Proctitis DX 1999, Pancolitis DX 2008
Immuran
Golimumab study (100mg every 4 weeks)
L-Glutamine 5000 mg + 600 mg pyridoxal alpha-ketoglutarate
Probiotis/VitD3+Ca/1000mg DHA


basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 4/24/2009 9:17 PM (GMT -6)   
Being smacked in the face with this DD is the worst when you want to so something sooo badly and its really important to you. I felt this way all the time around my boyfriends family. I am two years younger than him and his parents didn't really think much of me when they learned about my disease. I was paranoid about using their bathrooms (especially because his mom is a neat freak and his dad is a germ-o-phob!!)
I find that the more I think about it and worry about it analyze every possible scenario, the worse it got. Its hard NOT to think about it too. Its like you can't ever win...
I'd definitely try the dicylomine. Not only could it help your intestines spasing, it could also give you some piece of mind. Imodium is another option but I would talk to your GI about that first. Some GIs are very anti-imodium.
I hope things start to look up for you!


ps. you WILL live that long! :)
Sam(antha)
20 year old college student diagnosed in March 2005
Remission since January/April 2006->THREE YEARS!!!!!
Trying Colazal 3 750mg x2 (NOT for a full blown flare, just some random symptoms)
25mg Elavil
75mg Effexor XR for GAD
Will possibly go back to asacol
"If you don't like something, change it. If you can't change it, change your attitude."
Maya Angelou


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 4/24/2009 11:05 PM (GMT -6)   

Besides the fact that drugs were failing her, my daughter felt like you knowing this disease would be with her for the next 50+ years. That was part of her decision to have surgery.

My son, on the other hand, has Crohns. He will take immodium if he knows he will be out of reach of bathrooms for several hours. He participated in a car show last weekend and while he needed to use the port-a-potty several times (to pee), he was able to enjoy the day without worrying about his stomach acting up.

Try not to get too discouraged or down about your UC.


--Mom of bratcat (17 years old) and nonamejames (20 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect! Living and loving life as a teenager should!
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


Shadam
Regular Member


Date Joined Jan 2009
Total Posts : 307
   Posted 4/25/2009 9:58 AM (GMT -6)   
Thanks for everyones response... I thought that immodium wasnt good for UCers because of toxic megacolon???
Age: 25 / Male / Florida
Diagnosed: 11/08 / Pancolitis
Asacol - 2 x 3 day (waiting for results)
Prednisone / ended 1/09 (started at 30mgs and tapered down)
Mens Multi Vitamin - 1 a day
Calcium & Vitamin D3 - 1200mc of Calcium and 800iu of Vitamin D3
Metamucil Wafers - Once a day
Jaro - Dophilus Probiotic (3.4 Billion) - 1 a day
Diagnosed with PSC: 3/9 --now taking Urso


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4227
   Posted 4/25/2009 10:04 AM (GMT -6)   
My GI prescribed me Immodium. He said I could take one every day after my morning BMs. I haven't taken it, because it seems like it wouldn't be the healthiest thing to take every day. He said it was fine to take it unless I am bleeding, because that's when the risk of toxic megacolon comes into play. I would check with your doctor before taking it though.

Sorry to hear you missed out on Easter weekend. This disease sucks. Have you talked to your doctor about upping your Asacol? You're on a pretty low dose. You can take up to 12/day. Have you tried rectal meds? I know they don't sound appealing, but they aren't that bad and they have helped a lot of people here, including me.
25 years old; diagnosed March 2007;
Currently: persistant rectal inflammation
Asacol, 4 tabs, 3xday; Rowasa nightly; Viactiv; Metamucil wafers; multivitamin; Primadophilus Reuteri; sublingual allergy drops; Ortho Tri-Cyclen


Shadam
Regular Member


Date Joined Jan 2009
Total Posts : 307
   Posted 4/25/2009 10:10 AM (GMT -6)   
Thanks Sara...
 
I havent asked my GI to up my dosage of Asacol because I feel it isnt working, I almost feel it's harming me (usually have to go to the bathroom soon after I take my pills).  I also havent tried any rectal meds either.  My GI hasnt really explored to many different treatments...he wants me to start remicade but I'm kind of hesitant to do so...
Age: 25 / Male / Florida
Diagnosed: 11/08 / Pancolitis
Asacol - 2 x 3 day (waiting for results)
Prednisone / ended 1/09 (started at 30mgs and tapered down)
Mens Multi Vitamin - 1 a day
Calcium & Vitamin D3 - 1200mc of Calcium and 800iu of Vitamin D3
Metamucil Wafers - Once a day
Jaro - Dophilus Probiotic (3.4 Billion) - 1 a day
Diagnosed with PSC: 3/9 --now taking Urso


Shadam
Regular Member


Date Joined Jan 2009
Total Posts : 307
   Posted 4/25/2009 10:12 AM (GMT -6)   
Also, Sara do you feel like the Metamucil wafers are helping you with urgency and stool formation? When do you eat them and do you chug water afterwards?

Age: 25 / Male / Florida
Diagnosed: 11/08 / Pancolitis
Asacol - 2 x 3 day (waiting for results)
Prednisone / ended 1/09 (started at 30mgs and tapered down)
Mens Multi Vitamin - 1 a day
Calcium & Vitamin D3 - 1200mc of Calcium and 800iu of Vitamin D3
Metamucil Wafers - Once a day
Jaro - Dophilus Probiotic (3.4 Billion) - 1 a day
Diagnosed with PSC: 3/9 --now taking Urso


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 4/25/2009 10:18 AM (GMT -6)   
Definitely try the Immodium. It works great for me, I take it an hour or two before I have to go some where and by the next morning my BM are back to normal so there's no worry of toxic megacolon. Anxiety is a big thing for me when leaving the house so now I take a very small dose of Xanax (.125 mg) a few times a week before leaving. It completely takes all of my anxiety away. If the thought or worry about having to go to the bathroom pops into my head, it immediately goes away due to the Xanax.

You should figure out the best thing for you so that you can leave the house without worrying. It took me close to 5 years to figure out what works best for me. I hate having to pop pill in order to go out but at least I feel like I have my life back and can travel. We just did a 4 hour car ride to Chicago over Easter weekend and I didn't have the urge to stop once to use the bathroom.
Female, Age 38
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03, Diagnosed with UC 2/03
Current Meds:
Lialda, 6MP
Ferrex Forte
Acidophillus, Sacchromyces Boulardii, Oil of Oregano


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4227
   Posted 4/25/2009 10:24 AM (GMT -6)   
Hi again. =) I often feel like I have to go to the bathroom soon after taking my Asacol, too. That usually only happens with my morning dose though, so I figured it was just a morning thing since I usually have the worst time in the then anyway.

My GI didn't want to explore too many treatments either, which is frustrating. I asked him if I could try the rectal meds after reading about them here, and he said yes. They really help with my bleeding and urgency. I would try those before Remicade, but that's just me. I had pancolitis when I was first diagnosed but the Asacol and Rowasa got it down to just a little bit of mild rectal inflammation. Why doesn't your GI want you to try 6-mp before the Remicade? My GI said 6-mp would be the next step for me. Cortifoam (steroid enema) would be another option that a lot of people here are helped from. I've never tried it, but I will try that next before 6-mp or remicade.

I think the Metamucil wafers help with bulking up my stools. When I miss a day or two, it seems like I go more often with smaller deposits, but it's hard to tell if it's the Metamucil helping or if it's just coincidence. I drink at least 8 ounces of water with the wafers. I usually eat them between breakfast and lunch, around 10 or 11 a.m.

Do you think the Jaro-Dophilus probiotic is helping? I can never tell if my probiotics help or not.
25 years old; diagnosed March 2007;
Currently: persistant rectal inflammation
Asacol, 4 tabs, 3xday; Rowasa nightly; Viactiv; Metamucil wafers; multivitamin; Primadophilus Reuteri; sublingual allergy drops; Ortho Tri-Cyclen


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 4/25/2009 10:42 AM (GMT -6)   
Hang in there... it gets better. You're still relatively new to this. It's going to take a while for you to figure out what works for you and to allow your body to start healing. My first two years were pretty miserable, but I used the housebound time to research and read anything concerning UC and digestion I could get my hands on. Information is power.

I agree with others here that Immodium can be used occasionally to get you through car trips and other situations where a bathroom's not handy.

The probiotics, vit. D and the fiber supplements will be helpful to you, although you might try increasing both and/or experimenting with other brands. I've had excellent results with Custom Probiotics' six strain blend and Natren's Healthy Trinity. I've just recently starting using a flax fiber supplement and it's really worked well.

What's your diet like? Your stress levels? Are you exercising?
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.
 
 


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 4/25/2009 12:20 PM (GMT -6)   
hi Shadam,
Sorry about your Easter weekend. I know the feeling.
Just to add to what's already been said... there are a lot of things to try before going to remicade. I'm kinda surprised that your doctor thought that was the next step. I spent years trying all kinds of options before my doctor even mentioned it as a possibility. The rectal meds are a good first place to start. (Rowasa, Cortifoam, Canasa, Cortenema)
The anti-anxiety med, Xanax, can be a life safer. Just knowing that I have some with me if I need it, can be enough.
I agree with others that Lomotil can also be great.
Rather than up the dose of Asacol, maybe it makes sense to try another similiar drug, like Colazal or Lialda. I never did well with Asacol, but I just got 5 months of remission being on Lialda. You never know.

It's the trial and error that makes it so much fun. Right?

Have you thought about trying another doctor for a second opinion about your treatment?
-------
UC for the last ten years
Current Meds: 6MP since 2006, Lialda, Asacol foam, Lomotil
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine, Cortifoam)
Alternative treatments I have had success with: Acupuncture, Hypnotherapy


Jjc2007
Regular Member


Date Joined Apr 2007
Total Posts : 194
   Posted 4/25/2009 1:49 PM (GMT -6)   
I have had this disease for nearly 50 years now so I know how daunting it can be.
I am a retired teacher......so when I was teaching and when my disease was at its absolute worse (in my 20s and 30s), I used Immodium a lot and never had a problem.
diagnosed with UC in 1962
regualr meds:
Asulfadine (500mg tablets, 6 daily)
Folic Acid
Zantac as needed
open heart surgery in 2005 for removal of aortic root aneurysm


PalaceDan
Regular Member


Date Joined Aug 2008
Total Posts : 50
   Posted 4/25/2009 2:28 PM (GMT -6)   
The whole anxiety of this disease is definitely one of the worst things. I have a 50 minute subway ride into work every morning, and it frequently stops between stations and just sits there, which used to be quite scary. Since I've been in more-or-less remission I realise that things are sometimes quite psychological, both in terms of how you feel about it, and also the physiological effects on your digestive tract of getting stressed.

For what it's worth, I found that Asocol got me into remission. I use canasa as well every evening (can't hurt I guess).

I switched doctors and my new one is definitely of the view that you shouldn't settle for symptoms that mess up your life. If you're still experiencing symptoms to a degree that interferes with your life you could talk to your doctor upping the Asocol to 12 a day (2*6 or 3*4, whichever you prefer) and adding canasa into the equation - that's what got me into remission. Sounds like you tolerate the mesalamine fairly well - unless you're having side-effects you're not mentioning.

All that other stuff you're taking (the vitamins and so on) can't hurt I suppose. Only thing I can share is that I've tried all sorts of different probiotics and supplements and I couldn't put my hand on my heart and tell you confidently that any of them made any difference to anything other than my wallet. And I can also tell you that when I had to do a trip one time and didn't take all my assorted vitamin pills and potions with me my symptoms improved. So I guess there are things that can make thing worse.

I've taken immodium a few times. Good stuff. Certainly helps avoid anxiety on flights (probably my most stressful scenario as I have to fly a lot).

This is a nasty disease. But there are plenty that are a lot worse, and it does have a cure, even if it's an unattractive one. Many of us are able to enjoy most of our lives in remission, and for some of us it's also the case that even our flares aren't that bad for some, the majority, or all of our lives.

If it's any encouragement, I've had this at least two years, and am doing fine. I carry out a pretty serious job with minimal obstruction from my UC, have a wife and two small daughters and am no less active a parent for it, have shaved 5 minutes off my two mile running time (18 minutes now, which I realise isn't great, but the point is the improvement has come while I've had UC), bench 150% my bodyweight compared to about 100% pre UC, managed 100 push ups a couple of months ago compared to 50 pre UC. I feel quite lucky not to have more severe symptoms, and I realise others have far worse situations than mine, but my point is just that it is definitely possible to have UC and let it inspire you to try to overcome it. Whether you succeed or not is not the point - it's the attitude to that challenge that matters, in my humble opinion.

Last thing and then I'm off again - this board is a great thing. IBD is not actually that unusual, but because people don't talk about it, it's easy to feel isolated. So you may find, like I do, that this board is a really valuable resource with some great people on it. Having said that, two words of caution. First, my guess is that the average poster on here is atypical, because most probably you find that those in remission have less interest than those experiencing more severe symptoms in coming on here and reading and posting. Certainly, I came on here much more frequently when flaring than when in remission. So at least don't assume that the sort of symptoms that sound typical on this board necessarily represent the average for UC sufferers. You may well experience much milder symptoms than you hear people reporting on here.

Second, this is, as you've noted, a disempowering disease. When disempowered, it's human nature to try to take control, and one of the ways to do so is to believe that you have knowledge and understanding of the thing that is disempowering you - to understand something is, we assume, the first step in conquering it. Well, as far as I can tell, the defining feature of this disease (other than the huge amount of time spent sitting on a toilet) is that basically it's not very well understood. But I think it's tempting for all of us to convince ourselves that we are experts - usually as a result of our inevitable intensive internet research. So it's tempting to tell ourselves that we've somehow gained some sort of control through our efforts to understand. My personal view, which I'm sure others will disagree with, is that none of us can really speak with authority about anything other than our own personal experience. Even our doctors, who've trained in this and see and speak to many more UC sufferers than we ever will, operate through trial and error combined with guesswork. So when you see people confidently posting on here that the disease is this way or that way, and that this approach or that approach is better, you might want to take it with a pinch of salt. You'll find what works for you, together with, hopefully, a supportive and collaborative doctor as your partner. You're always going to be the expert on you and your UC, however much other people may appear to be or even claim to be more expert than you.

Sorry for the long mail - I was just feeling for you and wanted to share my experience and take on UC in case it helps.

Be well.
Diagnosed November 2007
10cm moderate
Canasa 1000mg 2 per day, Asocol 2x2 per day, Digestive Advantage Crohns and Colitis probiotic, Animal Pak multivitamin, Aloe gel, concentrated fish oil


Liza D
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 4/25/2009 8:40 PM (GMT -6)   
I feel the same way a lot! I remember going to a Dodger game with my family and we had to stop at a gas station on the way... TWICE! And then using the bathrooms at the game... sheesh!

I was told not to take ANYTHING without talking to my GI first. It seems like you need to know what questions to ask... they can't tell you everything...

But before trips or really important days, I hate to say it but, I just don't eat. I'll take in fluids... but usually nothing with a lot of sugar. If it's empty, usually nothing pushes me to stop the car. I also had to be very open with my husband about what was going on. Sometimes that means we are late for events. But at least we make it there. Many of my friends know the deal too so they let me jump a head of them in the line for the bathroom! If you aren't afraid to talk about it, usually, they aren't afraid to listen.

You'll work it out... But it takes time and practice!
UC (Pancolitis... 90%!) December 2001
Arthritis (2003)
Upper GI Ulcer (2006)
Osteopenia (2008)
Depression/Anxiety (2002)

Meds:Bump up every couple years... You name it, I've used it! Sulfasalizine, Asacol, Rowasas, Pentasa,
Remicade, 6mps... And now it looks like the once daily Lialda taken twice a day isn't enough...
Here comes Humera.

Soon to be mom- hopefully! As long as this flare dosen't take me out...

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