New to UC (welcome to the club right?)

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Bigphule
Regular Member


Date Joined Dec 2007
Total Posts : 137
   Posted 12/12/2007 5:19 PM (GMT -7)   
The question that I have may require some back story so please bare with me.
 
What I think, is that my symptoms started back in July.  Bloody diareah that sort of stuff.  I really didn't do anything about it untill September when it finally got to the point that I went into the ER.  They said I had Hemroids.  I did what they told me for the hemroids and nothing changed.  I went back to the ER at the end of October, on the 26th of November I was taken for a Colonoscopy and told I had IBS.  I was given Mesalamine, Sulfasalazine and Folic Acid.  Within a week my symptoms had gotten way worse.  I went into the hospital (actually admitted this time) after my third trip to the ER (just this past week) and diagnosed with UC.  I spent four days (not counting the 13 hours in the VA ER the daybefore waiting to be seen) not eating on either just an IV drip or a bland liquid diet (three meals total).  They wanted to give my colon a rest, and I bet it needed it too.  No sarcasim, my butt was tired.  I was released just this past Monday afternoon.
 
After the second trip to the ER untill my admission into the hospital I used Imodium AD to stop the diareah.  For the most part that worked.  It didn't do what it normally did, as in stopping BM all together, but it brought me back to a regular predictable BM.  Now I know that the Imodium AD was a bad thing to go with, especially for the more than a month that I used it ever day, sometimes even twice a day.  Some of you are probably smacking your foreheads and saying "Duh!" right now. 
 
My issue and question are thus.  I am having control issues.  I can't always seem to hold my BM off.  I'm not dealing with diareah, but I can't seem stop myself thus resulting in accidents.  Since my body has been dealing with diareah and then the Imodium for so long is it possible that I just need to re-"potty" train myself or is there soemthing else that I need to be doing?  Has anyone else had any issues like this?  Any advice would be wonderful. 
 
My mother has reccomended that I really start walking more and doing some other exorcises.  Kind of like when your potty training a child. 
 
Anyhoo thank you all for your time and advice. 

Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 12/12/2007 5:43 PM (GMT -7)   
Yeah, welcome to the club I spose - not one any of us WANT to be in, but it helps to know we aren't alone in the problems we all seem to experience.

princesscolon wrote a great post yesterday (http://www.healingwell.com/community/default.aspx?f=38&m=990920) about the stages we go through - both true and ammusing.

As for the lack of bowel control - yeah, thats the really suckful part of UC. Basicly, your colon has become extremely sensitive due to the amount of damage that has occured. The Imodium sadly masked the symptoms and allowed the colitis to get far worse. In basic speak, this means its going to take a long time to reign the colitis back in.

I carry a little back pack with me everywhere and in the bottom is a half roll of toilet paper, a change of jox and a pair of shorts. Trust me, best thing I ever did.

You will also learn that when you are flaring (sounds like you are now), certain foods you eat will make the lack of control worse. Things to cut out as of today - soft drink (any and all bubbly drinks), fatty foods and sugary foods.

Things that are good for me are sticky foods like porridge for breakfast, salads for lunch and pasta and rice type dishes for dinner.

As you read through the articles on this forum you will see heaps of great advice with regard to things-to-eat-that-don't-make-symptoms-worse.

Finally, have hope, take your medications every day, on time, without fail. You will get better and as you get better your control will return. Just don't expect this to be an overnight fight - it will take longer then you'd like but it WILL get better.

Finally, get on the net and read, and read and read some more. You need to understand it to fight it. A really good place to start is http://en.wikipedia.org/wiki/Ulcerative_colitis - and make your mum read it too. It takes family ages to understand!!!

Best of luck mate!
"We are dreamers, shapers, singers and makers..." - Elric, elder Technomage


Bigphule
Regular Member


Date Joined Dec 2007
Total Posts : 137
   Posted 12/12/2007 5:50 PM (GMT -7)   
Severin, thank you for the advice. I think (like I know *shrugs*) that I'm ending a flare up. They said my entire colon was inflamed! I've probably been in the build phase of a flare up since July. But I'm on only Folic Acid 1MG and Prednisone 20MG per day. Both are taken in the morning when I wake up. I will definatly keep reading and have already learned quite a bit from this forum.

One thing that concerns me is the fact that I still don't comprehend this disease/disorder. Nobody likes having a lack of control over their body, but the things I'm seeing like the Gent who can't even drink 6-8oz of beer without causing issues and whatnot really just blows my mind. I've got a very long road ahead of me I think. A lot longer than I thought it was. But, this UC junk is part of who I am now, and I'll adapt the best I can.

Thank you again for the advice and please keep it comming.

TheLori
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 12/12/2007 6:06 PM (GMT -7)   
My GI told me to excercise your butt. Squeeze -release-squeeze release etc. He said just like any other muscle, if you dont excersice it, it becomes weak and less reliable. I remember going thru what you did. The months of bleeding and diareah, mis diagnoses, ER visits...Well, once you find out what it is and learn how to deal with it, things get better, I mean at leaste you know what your dealing with now! The unknown is scarey.
Lori
37/F
UC diagnosed 1991
Asacal, zoloft,levoxyl, prednisone 60,50,40,30, 25,20,15,10,5, 0!!!!!!!!


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 12/12/2007 6:57 PM (GMT -7)   
Bigphule - Welcome to Healingwell! We're sorry you had to find us, but we're glad that you did!

Being dx'd with UC is a huge, life-changing event. I know I went through the whole series of grief stages to just accept things. Then, I hit the "learn all you can" stage and started having a better time. This forum has been a HUGE help! Where else can you talk about bms without people giving you funny looks? Okay - not just that we're on the web - but we REALLY understand!

Unfortunately, accidents happen. It bites. I use the following approach - clean up and get on with life. Thankfully, knock on wood, I haven't had any issues - of that sort - in over a year! (a WOO HOO! for me) I do keep a spare pair of undies in my purse along with some wet wipes. When I flare, I keep a change of clothes in the trunk of my car - along with MORE wet wipes. There are others here who have used adult diapers because of urgency issues. Sometimes just using those gives them an extra "boost" of confidence - where they KNOW they'll be okay.

It's good to read that you've decided to accept the UC as part of life now. The denial is dangerous. Remember that when you start feeling well again - don't stop taking those meds! (I learned the hard way and hope others don't have to.)

Many new members find it informative to read through the old posts. Many of the questions you have will have already been asked. Don't get me wrong! We don't mind those questions being asked again! Just sometimes we forget some of the great advice that was previously given :)

Hang in there - and I hope to see you around!
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Rowasa and Canasa as needed
Aciphex, Effexor XR, BCP, Rhinocort nasal spray
Forvia and a Probiotic
 
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate


Bigphule
Regular Member


Date Joined Dec 2007
Total Posts : 137
   Posted 12/12/2007 8:55 PM (GMT -7)   
TheLori and Dakotagirl thank you kindly for your advice. I have already started checking out old posts and will continue to do so. Knowledge is power. Enough of the chiches though a big serious thank you though for advice.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 12/12/2007 10:06 PM (GMT -7)   
Hey and welcome Bigphule :)

I do kegal exercises to try and help strengthen that area for better "control" it helps some but when you gotta go, you gotta go, and with having a disease, there is only so much left in your control...unfortunately it's the nature of the beast. Being as prepared as possible helps (change of clothes, plastic bags, wet-wipes, ect).

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 12/13/2007 5:33 AM (GMT -7)   
Hi and welcome aboard Healingwell :) I'm sorry that you're having such a rough time but if I can offer some hope is that yes, it can get better! I have had this for 15 years and in all that time, I would say I have had maybe 3 accidents. They are disheartening to say the least. But once you get your flare under control, things really do get better. Are you on any other meds besides the pred and folic acid?
 @--->--SHERRY--<---@
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies -Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~
To help Healingwell - click here: DONATE
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                       "The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 


UCinGV
Regular Member


Date Joined Mar 2007
Total Posts : 388
   Posted 12/13/2007 6:57 AM (GMT -7)   
Welcome! So sorry to see you here! (kidding. . . though that should be the new greeting for this place ;)

about control, here is my advice: You have to learn how to squeeze your sphincter (to keep anything from coming out) while simultaneously completely relaxing your abdominal muscles. Normally when you're trying to hold it in, the tendency is to squeeze your abs which pushes on your intestines and makes things start to move.

Also, you need to learn to relax. A lot of your bowel movements are controlled mentally. You might notice that your urgent need to go starts happening when you are getting close to home. The more you think about letting it out, the harder it is to keep it in.
12 Asacol
100 mg Imuran
6 or 9 fish oil pills
4 Acidophilus pills


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 12/13/2007 8:28 AM (GMT -7)   
The book Listen to Your Gut by Jini Patel Thompson gives steps for "training your bowel," so to speak. It's a combination of muscle and mind control. You can practice when you feel the urgency and you're at home, with facilities handy, and learn to hold things off for extended periods of time. Even during my worst flare - the first two years I was diagnosed - I had some close calls but I never had an accident.

You may also want to try supplementing with l-glutamine for gut healing and to help get diarrhea and urgency under control.
Diagnosed with ulcerative colitis spring 1999
 
Therapeutic dose sulfasalazine. Off the pred and doing well.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 12/13/2007 8:52 AM (GMT -7)   
Hi and Welcome! There is so much useful info here and the people are great!!!

I haven't had an accident yet but I did give myself a hemi from holding in when I should have gone to the bathroom....I was at a party in a small apt and felt uncomfortable having a bm there (it would have been loud too!) and thought I could make it home holding it (in immense pain). I did but I know I strained myself and that's why I have the hemi.

I do think we have a body clock that we can train for instance, I have to pee every am at 6am and when I was in remission I had a bm every day at 10:30. I think while flaring our bodies are so screwed up they don't know what to do.

Hope you are well soon!
Beth, 32
Major Flare Sept/Oct 07 ~ working on remission almost there
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 200mg 1xday nightly;Hydrocortisone e's tapering, Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


Bigphule
Regular Member


Date Joined Dec 2007
Total Posts : 137
   Posted 12/13/2007 11:15 AM (GMT -7)   
Thank you all for the encouragement. It makes me feel a bit better knowing that those that have the same issues as I do have found ways to make their lives better.

I am only on the Prednisone and Folic Acid right now, I have no clue as to what the future holds untill I get back in with the GI docs.

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 12/13/2007 11:35 AM (GMT -7)   
Educate yourself. There's a world of information about UC on the Web and many excellent books on managing inflammatory bowel disease and general digestive health. Don't put yourself at your doctor's mercy. In my experience, many of them are uncommunicative if not downright misinformed.
Diagnosed with ulcerative colitis spring 1999
 
Therapeutic dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 12/13/2007 9:57 PM (GMT -7)   

Welcome, but sorry you are going through this.  My advice is: 1. Educate yourself as much as possible 2. Make a food diary to see what foods you can tolerate 3. Stay hydrated 4. Never take NSAIDs 5. Get the book "The New Eating Right for a Bad Gut" by James Scala, (awesome book!) 6. Never go off your meds or try new ones without your GIs consent  7. KEEP all appointments with your GI!  8.Try to stay positive and look for support from family/friends.  It is embarrassing at first but they have no choice but to get used to it and I think it helps to talk about it. 

Ok, back to some other stuff:  If you are worried about accidents, wear an "overnight" or super long pad when you go out.  It works o.k.  I have had mucous/blood accidents in public but never a D one but the pads work.  My personal experience is that when I am out, I always can hold it till I get to the restroom or go less than at home.  On vacation I usuallly don't poop the whole time!  Then when I get home, I am going like crazy.  I haven't had leakage in a long time due to my rectal ulcer/inflammation, it closes me up. You get used to not eating certain foods eventually.  After the milionth time I had severe D after eating fast food, I stopped eating it.  I haven't had a whopper in like 8 years!  I miss it, but it's not worth the pain.  Besides, a lot of the stuff I can't tolerate is not healthy anyways.  I hope this helped.  If you have any questions, ask away.


Adrienne,27
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade
2007:Increased Remicade dosage-660mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia
Current meds: Remicade 660mgs every 6 wks, Lomotil, Tramadol, Darvocet, Clorazepate, new meds I am about to start: Prograf, Cymbalta, Lyrica


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 12/14/2007 7:38 AM (GMT -7)   
I just wanted to add that Immodium doesn't help me at all.  My doctor prescribed me Lomotil, it works a lot better than Immodium.  It makes you sleepy though... I try to only take it when I my D is severe and I have a chance to nap an hour or 2 after taking it since it makes me so sleepy.  When I wake up, my D is gone and I feel much better.  You have to be careful because it could make you very constipated and you could get blocked up or you could get addicted to it.  But, it works.

Adrienne,27
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade
2007:Increased Remicade dosage-660mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia
Current meds: Remicade 660mgs every 6 wks, Lomotil, Tramadol, Darvocet, Clorazepate, new meds I am about to start: Prograf, Cymbalta, Lyrica


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 12/22/2007 8:18 PM (GMT -7)   
Hey. welcome. this forum is great, but one thing you need to know about us is that we all experience this disease completely differently. I eat oatmeal every day and basically avoid raw vegetables completely. Others can't handle oatmeal and eat salads every day. so, there is a lot of variation. the trick is finding what works for you, and sticking to that. people here are so supportive and have tons of great suggestions, but ultimately you have to find your own rhythm. I have had this 10 months, and it is only in the last 3-4 weeks that my illness is finally under control. others have had it easier than me, and others have had it harder. but we have all had to have patience (which for me is one of the very hardest things).
29/Female/NC
Pancolitis dx 3/07
12 Asacol/day
150mg Imuran/day (steroid dependent)
Various vitamins, a probiotic and fish oil.

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