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Posted 8/16/2013 5:06 AM (GMT 0)
I have been putting a brave face on for a while now...but im at the end of my (mental) rope. I spent the 7 months between last flare up and this one building my life and body back...I had lost so much muscle during last flare and dropped down to a very thin 83 pounds it was ridiculous. I was walking around being asked why was I so thin and some (ignorant) people were telling me to eat up...so effing frustrating.

But really, im falling apart, this time it's a real nervous breakdown, I had one two days ago where I was alone in my house and I just starting crying sooo loud and literally screaming with agony at what my life had been reduced down to...

You have to understand: I have ALWAYS been a high achiever, competitive person, always at the top of my game academically and socially.  I was always the beautiful elegant intelligent lady, I got the high grades, went into the best university here, got married to quite a catch of a man.

I just found out the my friend who is the same age as me is preggo with her second, another friend of mine was divorced and she is now married again...it seems like every one I know is getting their own customised effing happy ending. Except me...I seem to be at the same screwed up stage I was at when I gave birth to my son. I mean don't get me wrong, I swear im happy for my friends but it makes me feel like a bit of a loser when my life is stalling and everyone else's is moving forward.

I mean what the hell??!!! I should be running my own private practice by now (I had to quit due to last flareup and thought i'll try again when we move), already had my second child so my poor son who is 2.5 yo doesn't end up a loner with no siblings. What have become of me and my life??!! This is some whacked out crap (as someone so rightly said before- I think it was somedude)...

This cannot be the future that was planned for me, no effing way...I mean I cannot succumb to a life mediated by bathroom visits and dramatic flares and unguaranteed remissions...

To top it off: I have a strong family history of mental illness, OCD bipolar and schizophrenia...lol it's like fruit salad you get each of everything. No shortage of crap...and im worried that this disease is gonna push me to my mental limit and some other crap might happen then. I already have OCD but it's mild and I don't take meds for it. But I do tend to be 'strong' in my emotional reactions and do tend to overwork myself.

Right now I feel extremely depressed...basically feel like there is no way I can live with this illness, either it gets better and stays better or I get surgery. i'd rather that than to get better and then only flareup at some other critical time of my life like postpartum or starting a new job or travelling. So far all my flares coincided with times of great change and it really complicates things for me. Like right now I should be enjoying my time as im moving back closer to my home city and work opportunities are better there. But hey instead im too busy stuffing suppositories up my a** and splurging money on unproven naturopathic protocols.

Anyone ever feel left behind with this disease? how do you deal with it?

Is what im feeling 'normal' considering this is my third flare in less than 2.5 years?

Any advice is appreciated...

Posted 8/16/2013 5:38 AM (GMT 0)
I like the fruit salad line - pretty much sums up my life and probably most everyone =

sorry yours is extra sucky right now - I don't have a clue what normal is, but I think what you are feeling is certainly reasonable considering -

lucky for me I've always been a low achiever, so the 10 years I have invested in this stuff hasn't made me too upset - and I have a beautiful son who has kept me busy so I didn't notice what I missed by being sick -

not sure who you are praying to, but I hope you are keeping up with that - I don't always get the answers I want, but that's ok -

i'm truly sorry you have to go through this - hang in there conq -
Posted 8/16/2013 7:15 AM (GMT 0)
Stud: Thanks for the kind words and lol at the low achiever line, the things you guys write really make me laugh when other things in life are looking rather bleak.
Im one of those people who 'did things by the book' always doing what's right and trying to help people, i believe in karma so i try to do unto others what i want done to me. Never smoked or done the crazy stuff when i was a teenager, i was my parents' delight (aka a bit of a nerd lol). Then university rolled around and thats when i started to get a bit of an attitude but i was still making everyone around me proud. I tend to stress and as a perfectionist it's not easy but i have changed alot since i was dx, but maybe not enough? I mean i have already lowered my standards and goals in life to be more realistic considering, however it seems the bar keeps dropping lower and lower, maybe i have to change my goals to: be happy with staying at home (close to toilets), and one child is enough. Oh and no overseas holidays because you never know what foods you're gonna eat there and whether they agree with mr colon.

Sorry i hate being negative, i keep telling myself that eventually my persistence will pay off. And my prayers to God (haven't been doing them regularly recently) will be answered..

Post Edited (Conquer UC) : 8/16/2013 1:24:23 AM (GMT-6)

Posted 8/16/2013 11:29 AM (GMT 0)
Conquer,

I had tears in my eyes, reading your post.

I am so sorry that you are so depressed and having such a rough go of it both UC wise, and depression wise.

It's absolutely normal to feel the way you do. It's part of the process in the stages of grief.

I remember at the beginning of my diagnosis, feeling exactly the way you do.

Feeling desperate, depressed, angry as hell, and grasping at the unfairness of this all.

I wanted to remind you to get your vitamin d3 checked, but you probably know that better than most.

I'm glad you've reached out to us, because we do understand exactly how you feel.

We may not have the answers though.

Maybe you should at least have a surgery consult, so that you know realistically what the end point might be?

And then re-examine what you're doing: in terms of supplements, diet, meds, etc... to see what's working and what's not?

Is there any way, you could take up some meditation as a way to stress relief?

Sending you big hugs. :-)

I know it's hard to see it, but this too shall pass... it always does, except that when you are in the thick of it, it's hard to see that.

And we're here for you! :-)

Posted 8/16/2013 11:45 AM (GMT 0)
I can relate very much to what you're saying. We have very similar personalities and backgrounds and are almost the same age - I'm 27. I've had ulcerative colitis since I was 10 years old. I'm in the middle of a flare at the moment and struggling to manage full-time work alongside the familiar pain, mental fog and sheer exhaustion.

I see you're a nutritionist. Have you investigated the Specific Carbohydrate Diet? (If you have and it didn't work for you, please ignore the following!) This diet works for me, it's my first day back on it today so its effects haven't kicked in yet. (I had a specialist appointment yesterday with my gastroenterologist who is strongly wanting me to go on Imuran, which I'm very uncomfortable about, hence going back on the diet - though if it does not work I will take Imuran.) The Specific Carbohydrate Diet always immediately works for me, but I've been lacking in willpower in the past to stick to it for more than about 3 weeks before I start cheating more and more and find myself back where I started. But my colleague who has Crohn's disease stuck to it perfectly for a year and appears to have possibly "cured" her Crohn's/achieved remission, now able to eat what she wants and experiencing no symptoms, and in excellent health. I am wondering whether you could channel your strong character, perfectionism, desire for achievement, etc., into trialling this diet, if it's not something you've explored?

I'll keep this short for now but just wanted to throw that out there. I empathise with how you're feeling. Is there anything that you tend to tell yourself to help yourself to feel better emotionally? It's hard when you're physically so run-down, it's a bit of a vicious cycle. If you can improve your physical health it gives you some space and clarity to work on your mental health.

Apart from steroids, what medication have you tried/are you on?
Posted 8/16/2013 11:51 AM (GMT 0)
tebby,

Welcome to the forum.

Glad the SCD diet is working for you.

Posted 8/16/2013 12:00 PM (GMT 0)
Try reading some books like "Awareness" by de Mello, or even "How I refuse to be miserable about anything...yes anything" by Ellis?

You are intelligent, no doubt about it, I can tell by your writing, but right now it really is your worst enemy. You're a "thinker" and thoughts like "I should be in my own practice" or "I should be enjoying my time" or even "I should be WELL" are all false.

Mystically, spiritually, realistically, and even holistically you SHOULD be right where you are right now. Most people don't realize we heal from the inside out and has nothing to do with what we want.

I'm a thinker too, and when my mind ruminates with how things should be, or what I believe should be happening, or even what I believe should happen, it starts to cause stress, worry, and finally depression. Reality does not cause depression our thoughts do!!!

In reality you are and will always be a beautiful, intelligent person no matter where you are in life or how sick you may be. Your path right now may not be what you would have chosen but is anyone's?

Check out that book Awareness, it's amazing!!!

John
Posted 8/16/2013 12:04 PM (GMT 0)
Thank you InSoFla! :)

Desperation during a flare leads to me searching for relevant internet forums... this one looks like one of the best/most active out there. The SCD has always worked for me in the past and I sense some small positive changes today (it's night where I live), but I'm still very much in the middle of this flare so fingers crossed improvements happen quickly!
Posted 8/16/2013 12:09 PM (GMT 0)
I have felt very similiarly about alot of what you said. I'm 4.5 years w/ this crap and continue to flare, albeit mildly, but than it will pipe up--and than I hopefully get it down to the usual mildish again. It is depressing, and I often thought...is this how my life was meant to turn out? Stuffing enemas up my *** constantly (and I do mean constantly--2.5 yrs nightly and going strong) Often needing to add a second foam or supp during the day during my "pipe" up times.

We just planned a short overnight trip w/ my son and instead of being excited, I am worried about how I will feel. Will I be able to eat? How will I bring my whole arsenal of embarassing rectal meds. I have been very down lately and even out of desperation (ok, I am ready to get reamed about this) started trying to smoke a few cigs a day. I am an absolute health person who has been an always non-smoker.

So going from one Dr. to the next, one rectal med to the next, the new latest and greatest diet, supplement, philosophy, partridge in a pair tree. Pathetic and upsetting.

I am so sorry that you are feeling down. I just want to say that I understand and send hugs your way.
B
Posted 8/16/2013 1:16 PM (GMT 0)
Wow you guys, thank you all so much you are all such amazing people, truely you are. You know i feel better just knowing im understood and validated. Hubby tries his best and empathises but i don't think he really 'gets it' you know?

I think this is the lowest i have felt since my diagnosis, every flare i think woa this is some deep dark hole im in but then the next flare beats it. Which is why as i said i feel worried as to what the outcome of continuing down this path may be (mental health wise).

It's interesting how so many of you share some of my feelings, it's like uc makes you think or live in a certain way. It's challenging and difficult to live such an unpredictable life. Like i said to hubby imagine you spend months building a house and furnishing it etc and just when you have made it into a home and about to move in someone breaks in and destroys/burns/breaks everything. And leaves just bare walls and you have to start rebuilding again. Imagine this happens more than once and everytime you to have to rebuild not knowing when the next break in will be or how long it'll last. It's devastating.

@ JohnPhx: i love reading self development books! I'll definitely check it out! Thanks.

@ InsoFla: thanks for the good vibes. My vit D is in the 60s nmol/L ( i think you guys have different measures in the US) but basically in in a good range but could do better.

@ tebby: i have tried the paleo diet which is more strict than SCD, and to be honest i have not noticed a difference. I only did it for 1 week though. But i mean no improvement i could notice (i keep a food diary). But im already GF anyway, as for dairy i have very little of. Besides tbh it's quite hard to stick to it when you have a toddler to run after all day.

@ hateuc: yes rectal meds are a nuisance when travelling! Been there done that...i hope you enjoy the trip though, children are so precious and they don't stay kids for ever. So go to the trip and have fun .

Post Edited (Conquer UC) : 8/16/2013 7:24:14 AM (GMT-6)

Posted 8/16/2013 3:31 PM (GMT 0)
"I see you're a nutritionist. Have you investigated the Specific Carbohydrate Diet?"

Maaaan, she's a Nutrionist. Of course she knew about the SCD. She doesn't do it cause it suxxorox.
Posted 8/16/2013 6:18 PM (GMT 0)
conquer...what meds are you on at this time?

It's a tough place to be when one's life seems put on hold while feeling left behind. I think once you start to get feel much more improvement, things will feel in better balance.

q
Posted 8/16/2013 10:19 PM (GMT 0)
Oh my, I totally feel your pain.  I like to think that before my diagnosis I was a young vibrant soul and now I just feel so lost and depressed at times because I've been forced to say home and 'rest' to help heal my severe flare up that isn't responding to meds.

Hang in there. I am glad that at least we have this forum and others that understand. 😊

Posted 8/17/2013 12:11 AM (GMT 0)
Yeh the scd/paleo/gf and other diets have never put me in remission. They help a little and GF reduces bleeding but otherwise no remission. During my first flareup i was on clear/liquid ony diet and i was just having broth (no carbs whatsoever) basically for 5 days straight and it had absolutely no effect neither on my inflammation markers, or the number/quality of bms.

As for meds: im on pentasa and pred suppositories. I cannot tolerate mesalamine supps/enemas at all (immediately worsen bleeding and rectal pain) my guess is bc of the sulphite preservative in them.

My next step is imuran/6mp. But i tend to react to drugs and get nasty side effects. Also, without being on immunosuppresants i already have a 'suppressed' immune system as i tend to catch cold/flu quite easily and get sinusitis regularly and sometimes it doesn't clear up even with antibiotics. My latest stint was an ear infection which resulted in tinnitus :/

Post Edited (Conquer UC) : 8/16/2013 6:17:41 PM (GMT-6)

Posted 8/17/2013 12:49 AM (GMT 0)

Conquer UC said...
Yeh the scd/paleo/gf and other diets have never put me in remission. They help a little and GF reduces bleeding but otherwise no remission. During my first flareup i was on clear/liquid ony diet and i was just having broth (no carbs whatsoever) basically for 5 days straight and it had absolutely no effect neither on my inflammation markers, or the number/quality of bms.
/

Yes, some people respond really well to what you just wrote in record time. It is possible that you're disease is responding to the AIR of the place.

There was a Lebanese holistic doctor that said that some people he knew got colitis here in Canada, went back to Lebanon to visit and the disease went away there.

Others go in different areas and the disease goes away.

I wrote before that it's based on hormonal, like why is a female flaring and getting diagnosed after birth or etc.

This disease needs a few conditions to maintain. You remove but one condition and it cannot continue. In your case, you haven't been able to remove any condition. In cases where diet has immediate effect, it is possible that one of the trigger was food related.

Let me give an outrageous example: Let's pretend I fall from a third floor of a building and break my leg. The fall will put my body into shock.This type of incident could very well reverse the colitis process.

I've read on here on someone's sign that he/she got colitis after being in a major accident. So in this case, this was a trigger. We could theoretically say, the accident was a trigger for colitis.

Listen, it's important to think outside the box here. Even if it seems weird, stupid, it does not matter. I'll give you another example. A user one here called "I love Coffee" got diagnosed with Colitis and for 6 months was on medicine, then all sudden, he/she had a total remission, no meds, no nothing for 10 years eating the same diet as before. Can you explain such a thing? You cannot.

I theorize that something happened, he/she did something that was able to untrigger the chain of events. What was it, I don't know. The disease might still be there, but cannot trigger until it finds the trigger path again.

You could very well do "ONE" thing and put your disease in remission forever.
Posted 8/17/2013 2:35 AM (GMT 0)
so to sum up your words .........

" nobody, I mean NOBODY knows shiitsz about this f-ing dizeez !!!!"
Posted 8/17/2013 4:55 AM (GMT 0)
Sorry for what you're going through conquer..it definitely sucks and I'm sure we can all relate on many of the same levels...IBD is as frustrating as it is degrading and totally life altering.

(((HUGS)))
Posted 8/18/2013 8:26 AM (GMT 0)
Thanks Pb4 xx.

Somedude wow that was some stuff you wrote it really got me thinking!!! I have been getting worse sinus infections along with UC dx, it may very well be the air!

Im about to move back to my home town (where i lived before getting married) so the air is different there. Will see what happens huh :))

Right now my eyebrow bone hurts from the sinusitis, eventhough i just finished a course of doxycyline (to which the culture showed sensitivity).
Idk, it's frustrating. Now im dealing with two problems insteas of one, fun!

P.s. i think doxy made my depression sooo much worse! I mean oh my God that drug made me a bit like i was on pred!
Posted 8/18/2013 10:57 AM (GMT 0)

Conquer, I hope your feeling better now, and I think many on here understand exactly how you feel. 

I get down too even though I think I'm pretty upbeat most of the time.  I crack jokes to myself about UC but it's hard when you wonder if things will get better or worse.

I love to be outside, but then I get worried I might have a D attack so I just lay on the sofa many times.

Family invites us out to dinner and I have to worry about what can I eat since I'm on SCD.  It's not much fun to eat out when your wondering if there's gluten in the boring bean mix you were served or some other chemical that will upset your stomach.

I spend hours online seeking answers. Looking for special Dr's that are willing to think outside the box. Thank God for the internet and this forum.  I don't know what people did before having the web at their disposal in dealing with UC.

I'm trying FT.  That is some f'd up stuff.  I'm so desperate, i'm willing to do about anything. 

Now my daughter who just turned 1 is having D issues too and that really scares me.  The dr's think she is lactose intolerant but we still are having problems.  She is losing lots of weight and her little arms are so thin.  She was so healthy a few months ago. We put her on a soy-based formula and the Dr said BRAT diet.  I was thinking OMG I know that diet too.

It's one lemon after other.  I'm trying to make lemonade but it still tastes sour.  Ugh.

BTW did you use a lot of sanitizer before you were diagnosed?  I used it obsessively since I was teaching.  I'm just trying to find a link to the germs/UC.  

Posted 8/18/2013 1:10 PM (GMT 0)
Ugh i reallyyyy hope things turn ok with your daughter. Oh God this disease is hard enough on adults i cannot imagine a kid with it. Take her to a dietitian and do an elimination diet on her. Or maybe do IgG4 food allergy testing on her. In case she is allergic to somethng.
Tbh it is kinda suspicious when two people in the same family get ill together it makes you think ?infectious agent at work. Have you done metametrix stool testing?

But yes i have not felt this low since my pred days it's scary. Im feeling better now but just two days ago when i was still on doxycycline i almost felt, well, like i didn't care if i woke up the next day. Im pretty sure that drug messed up with my head and made the depression (that ive had since being dx ) so so much worse.
The depression is there though, i admire anyone who is is flaring and not feeling depressed.
Posted 8/18/2013 1:13 PM (GMT 0)
Oh forgot to mention: v interesting about the hand sanitizer thingy, yes i used to use it ALOT. Maybe prior i was getting a good supply of naturall probiotics from my hand but afterwards well i was killing them and paid the price :(
Posted 8/19/2013 12:35 AM (GMT 0)
Conquer UC I just want to say I am right there with you. I was diagnosed 4 weeks after giving birth to my son in October. I had symptoms that started when I was 20 weeks in May of 2012.

Rough ride is an understatement. I feel cheated, robbed, heart broken, depressed, ANGRY, helpless, and down right blind sided. I lost my milk production, most of my hair, pooped my pants and worst of all could barely manage taking care of my baby boy. I'm in my first flare for over a year.

I made the jump to 6 mp and it made my lfts go crazy. So now I'm back on just mesalamine - oral and rectal. I have a fissure and 3 hemmies. My daily regimen is more time consuming than I could have ever imagined. And my GI is pushing remicade.

I like you am driven and had SUCH a different picture in my head. Wanted to start trying for baby number 2 this spring but refuse to do it in anything less than a solid remission because I could never go thru what I did the first time.

YOU ARE NOT ALONE. EVER.

I force myself to see the silver lining. This disease has given me a new out look on life. Granted there are days I can't see it but there are days I can. I never take the good for granted. And I truly believe that there will be a point when I can look back on this and say HOLY crap and mean it literally.

I know no one that can relate except people on this forum who have given me endless education and information. That also is a silver lining.

If you ever wanna UC pen pal please let me know. I'd love to have someone on the roller coaster ride next to me.

I send you positive poop vibes and lots of hugs.
Posted 8/19/2013 12:52 PM (GMT 0)
TotesMagotes: hey there buddy :)
Yep, your story has alot in common with mine, unfortunately for both of us i guess. Im there with you on the myriad of emotions you are feeling going through this. And oh my about the ttc again, i was like you in that i wanted to try for another baby quite soon after giving birth (that was what i had in mind even before giving birth). But alas! things went in a totally different direction, i feel like im caring after a different kind of 'baby'; a colon that likes to throw tantrums at the worst of times!

See, it's that silver lining/hope you mentioned that you really need to hold onto with all your might. Don't ever lose that. The times when i do i find myself free floating in space- the space of depression.
I really need to hold onto it and tell myself that im not going to spend the rest of my life like this. Something has to change, the world will eventually open up a new path for us, a healthy one...
Posted 8/19/2013 2:51 PM (GMT 0)
Hi Conquer,

Reading your posts I can relate in so many ways. My family is also pretty wraught with mental illness and I worry that all these meds will have a negative affect on my brain which will eventually upset the already delicate chemical balance.

All I can say is stay strong as there are positives even if things are tough at the moment. Make the most of remissions by doing what you enjoy. When you are ill then try not to stress about it. Stressing won't change anything. Better to let things play out and try and get better.

Sorry that you are having a hard time at the moment.
Posted 8/19/2013 3:30 PM (GMT 0)
conquer,

How are you feeling today?  I was glad to read that you are not as depressed as a few days ago.  I'm also glad you are moving "home". 

This site is great!!!!  I hope you find as much comfort and compassion from these folks as I have.  They are amazing.

I am on Imuran and don't seem to have any side affects.  I have asked for it to be increased twice because I feel it helps me the most.  I too was DEAD SET AGAINST IT. 

Take it one day at a time.  If you get down, even for a second, think of all the people here and know...you are not alone. 

Very best wishes!

CR

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