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shellrosa
Regular Member


Date Joined Aug 2015
Total Posts : 22
   Posted 1/10/2017 1:49 PM (GMT -6)   
I am desperately needing to vent, and I hate complaining to my family and friends because I don't want pity and I feel like a burden when I do so I'm going to vent to you all... lol
I am having such a hard time living in constant pain, between Ulcerative Colitis and bladder pain (which has been going on for over a year) that has yet to be figured out, I feel so defeated. I'm so tired all of the time and it is so hard to have a social life, and most of the time it takes all I have to make it through a whole day at work. I feel like a terrible wife because I'm always hurting too badly to fulfill my wifely duties (wink wink). I feel like there is never going to be a time in my life where i will be able to live a normal life. Every time I turn around there is some new symptom and I am so very sick of it. I know that there are people who are way worse off than I am, so I feel very ridiculous whining about my problems, but sometimes you just need to be a Whiney baby you know?
27 Yo Female
Mommy to a beautiful daughter
Dx in 2008 w/ UC & 2013 w/ Barrett's Esophagus & Interstitial Cystitis 10/2016
Remicade since 08/2016

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 14453
   Posted 1/10/2017 3:07 PM (GMT -6)   
Yes, I get it. I've been there many times. I actually always liked having an excuse to not do wifely duties, but that's just me. I had surgery and I don't have any excuses anymore. I don't mind though, I am still better off, couldn't live the way I was forever. Vent away!! You will get better, things are up and down with this illness - give yourself time.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 8749
   Posted 1/10/2017 3:33 PM (GMT -6)   
We get it and have been there our unfair share of times, cancelled on many social events, been in pain and feeling hopeless. Living with chronic illness sucks when we've got ongoing symptoms and no solution easily in sight. Family, spouses, friends and coworkers don't get our invisible illness (and being chained to the loo makes us feel like poo and let's us stew about it). Hey, veny away and try to smile or laugh a little as it just might help a bit.

If you're only on remicade and struggling then you might want to have multiple medications simultaneously as that seems to produce the best results. I'd add an immunomodulator like Imuran or 6mp. Perhaps even rowasa anti-inflammatory enemas as they hit the area that heals last, is the most severe, and gives us the most troubles. Mix your treatment up a bit and find a good remission. I've been there and remission enables you to forget about uc for at least a few years.
Moderator Ulcerative Colitis
John
, 38, in a minor flare, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; 50mgs 6MP, 4.8g Mesalamine DR, 5mgs pred (tapering)

Tips for surviving UC: learn to laugh as it helps, get a good pair of running shoes for bathroom runs, and appreciate the small things.

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 698
   Posted 1/10/2017 8:28 PM (GMT -6)   
You're not whining. IBD is non-discriminatory. Work, spouses, play....yada, yada, yada. I 100% get it. I think I'm still in shock as to how devestating this disease is and it's been 15 years since my official diagnosis, 27 since it all friggin started.

Glad that we all have HW. It does easy things for our family to vent here and not to them.

Oh and regarding the bladder pain. Have you been checked for a fistula? I don't know what your symptoms are but inflammation can definitely cause problems in other organs. When my bowel urgency is extremely severe, I also have bladder urgency. 2 for 1 deal!!

Post Edited (U B Tough) : 1/10/2017 7:40:46 PM (GMT-7)


shellrosa
Regular Member


Date Joined Aug 2015
Total Posts : 22
   Posted 1/10/2017 9:39 PM (GMT -6)   
Thank you guys! I've been having a really rough time dealing with all of this lately. And as for my bladder problems, I have urgency and spasms, I also have pelvic floor dysfunction, which causes me to have to manually reduce the pelvic floor so that I can have a BM. And it seems like every time I have a colitis flare up, my bladder & pelvic floor issues get worse. And as for the medication, I am going to start increasing how often I get my infusions so help keep me from flaring up. I really appreciate you guys replying!
27 Yo Female
Mommy to a beautiful daughter
Dx in 2008 w/ UC & 2013 w/ Barrett's Esophagus & Interstitial Cystitis 10/2016
Remicade since 08/2016

WorriedUCer
Regular Member


Date Joined Jul 2014
Total Posts : 210
   Posted 1/10/2017 10:37 PM (GMT -6)   
Hi Shellrosa,
I can 1000% sympathize with your situation as I too have UC and also painful bladder syndrome, and find that when my UC symptoms flare (which is quite often), my bladder starts being so painful within the same day. I also was infected accidentally with cold sores by my ex partner, and owing to my immune system being terrible, I also get those frequently. So it just always feels that between that and my period, it's rare to have a week where there's not something horrible and painful going on. I'm so over it and have withdrawn from my friends because they don't truly understand why I have to cancel all the time or disappear for weeks at a time. I'm also not motivated to meet new people because let's face it, who really understands. But then I get well for a period of time and find myself yearning for that connection. It is tough!!

shellrosa
Regular Member


Date Joined Aug 2015
Total Posts : 22
   Posted 1/11/2017 5:11 AM (GMT -6)   
WorriedUCer- I hate that you have to deal with that. It's so hard to try to maintain friendships when it takes everything you have just to get through the day! I always feel like a miserable friend bc I have to flake on events all the dang time. And you're total right, no one understands. I even have a hard time trying to make my husband understand why I can't go out and do things with him all the time, or why I never feel up for sex. It's like they think that just because we look okay, we aren't suffering. So frustrating. Do you have any family that could help fill the void when you're needing interaction? And also, I found that pets help with that smile
27 Yo Female
Mommy to a beautiful daughter
Dx in 2008 w/ UC & 2013 w/ Barrett's Esophagus & Interstitial Cystitis 10/2016
Remicade since 08/2016

WorriedUCer
Regular Member


Date Joined Jul 2014
Total Posts : 210
   Posted 1/12/2017 5:31 AM (GMT -6)   
Hi Shellrosa,
My family is quite small but they do offer me support, and I have remained friends with my ex and he is also very supportive as is my work so it could be worse. It's hard to tell which is worse sometimes, the UC or the bladder, although luckily we don't have to choose as they both come at the same time lol! I have found some relief with D-mannose which is just a sugar that they use to treat UTI, but also seems to work for me. I was skeptical at first, particularly with it being a sugar which is a no-no, however bacteria are so attracted to it that they bind to it instead of your bladder wall. Other than that, I have found tacrolimus suppositories for my UC also seem to help soothe my bladder symptoms. I don't know how as I thought they'd make it worse in the same way that pred makes my bladder unbearable.
I definitely need a puppy, but alas I am renting in an apartment sad
I honestly wish you all the best and if there's anything that any of us can do to cheer you up let us know smile I try and stay positive by reminding myself that there are a lot of drugs that are due out in the coming years to ease our suffering.

shellrosa
Regular Member


Date Joined Aug 2015
Total Posts : 22
   Posted 1/12/2017 9:47 AM (GMT -6)   
WorriedUCer- thank you! I am going to look into the D-Mannose! My family is my biggest support system as well. They're the only ones that have really seen my struggle. I try to remind myself daily that everyone has their own battles, and this is mine and i could have been dealt a worse hand. You all already have cheered me up, it's nice to be reminded that I'm not alone in fighting these problems. You guys are great!
27 Yo Female
Mommy to a beautiful daughter
Dx in 2008 w/ UC & 2013 w/ Barrett's Esophagus & Interstitial Cystitis 10/2016
Remicade since 08/2016

shellrosa
Regular Member


Date Joined Aug 2015
Total Posts : 22
   Posted 1/12/2017 10:31 AM (GMT -6)   
Curedcolitis- I am so glad that you found such an awesome cure! I have Activated charcoal on my list of things to look into smile and luckily my colitis is reacting really well to the remicade, and my main problem is my bladder and pelvic floor dysfunction. Thank you for your advice, I will look into it
27 Yo Female
Mommy to a beautiful daughter
Dx in 2008 w/ UC & 2013 w/ Barrett's Esophagus & Interstitial Cystitis 10/2016
Remicade since 08/2016

Doggiedo
Regular Member


Date Joined Jan 2014
Total Posts : 407
   Posted 1/12/2017 11:56 AM (GMT -6)   
It does suck doesn't it? Sometimes I think, what's the grossest, most embarrassing disease and why did I have to be the one to get it?!? It could not be worse sometimes. But I always try and tell myself things could be worse.

Sorry you have the additional pain and challenges to deal with. I think visiting here and keeping in touch with those who are going through the same thing helps us in not feeling as alone. I agree- I hate to complain to family meme era, mostly bc they'll worry and I don't want them to know how bad it is. I mean worrying on their part won't help anything get better and I'll feel worse if they are worried. Anyhow, keep coming on here - we understand and have got your back. Hang in there!
Diagnosed 2003, hospitalization in 2006, currently sever proctitis.
Current meds: Flortistor 2 pills/daily & Entyvio (since August 2016), hydrocortisonefoam in am, canasa mid-day, hydrocort enema in pm (if can't retain, I use foam). Pred 40 mg. Colonoscopy scheduled in two weeks.

shellrosa
Regular Member


Date Joined Aug 2015
Total Posts : 22
   Posted 1/12/2017 12:28 PM (GMT -6)   
Thank you Doggiedo! I'm starting to see that being able to talk to others dealing with similar problems really does help. I've always said that I wouldn't let these issues define who I am, so I would avoid things like this, but I've realized that talking about it really does help smile
27 Yo Female
Mommy to a beautiful daughter
Dx in 2008 w/ UC & 2013 w/ Barrett's Esophagus & Interstitial Cystitis 10/2016
Remicade since 08/2016

shellrosa
Regular Member


Date Joined Aug 2015
Total Posts : 22
   Posted 1/12/2017 12:33 PM (GMT -6)   
Thank you for the info Curedcolitis!
27 Yo Female
Mommy to a beautiful daughter
Dx in 2008 w/ UC & 2013 w/ Barrett's Esophagus & Interstitial Cystitis 10/2016
Remicade since 08/2016
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