Crohn's Disease Forum » Support Forum » Vent Away » It's all going haywire - part two!


 
02-12-2011, 02:05 PM   #1
ameslouise
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It's all going haywire - part two!

Hello all - Just needing to vent a little. Did I come to the right place?

I've had it. After three years of dealing with the Crohns, trying the "natural route" (which was excrutiatingly difficult AND expensive), Humira for almost a year, Metho for four months, nothing has changed....I'm finally off the prednisone again and all my symptoms have returned with a vengence. F***!!!! It seems the Humira and the Metho aren't doing squat and the only thing that keeps my symtoms under control is pred.

I feel like my body is revolting against me. I do everything right and nothing helps. I'm right back to square one where I was three years ago.

My doc is going in on Friday to take a look and see what's going on. I'm to start on cortifoam on Monday to tide me over until we can figure out the next step. I have a feeling surgery is in my very near future. I just want the pain and the urgency and the accidents to GO AWAY.

Thanks for listening. I feel really defeated.

- Amy
02-12-2011, 02:13 PM   #2
DustyKat
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Oh Amy I'm so sorry that this happening to you, it sucks big time.

God I hope you can get some relief with the Cortifoam and the doc can find you some answers. What sort of surgery would you be having?

Thinking about you Amy and sending loads of squishy hugs your way...........

Dusty.
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02-12-2011, 03:29 PM   #3
Astra
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Aw Amy!
This is such a bummer! After everything you've been thro! No wonder you feel defeated.
Thinking of you and hoping the doc sorts something out on Friday.
Sending a big hug your way, stay strong, we're here for you.
xxxxx
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Joan

Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




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02-12-2011, 03:51 PM   #4
MADiMarc
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Amy,
What a rip! Hopefully the doctors can figure something out for you so that you feel better. Let us know how it goes.
Good luck,
Michele
02-12-2011, 03:52 PM   #5
Mary
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Amy, I am not scared of surgery....its seems to have helped alot of people. Its seems like sooner or later there isn't any other option but that one. From what I have read it is not a bad one. GEEEZ Im actually being optimistic (totally not like me). What Im trying to say is at least there IS an option. My greatest fear is getting cancer like my brother (brain tumor) he did not have any options.....Good luck you deserve it and WILL get it. Thank you for replying to my posts it has helped me alot. What goes around comes around.
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Mary Mack

Diagnosed 10/2010 Mild Crohn's
01/2011 Severe Crohn's with fistula

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Imuran

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Pentasa
Humira 3/11
02-12-2011, 07:51 PM   #6
dreamintwilight
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Aww, Amy. Sorry to hear things still haven't improved. I would feel so angry and frustrated like you must feel.

I hope the cortifoam does work, at least in the meantime, until you get things sorted out. I have not had to get surgery yet, but who knows...if you end up going that way, maybe you'll feel like it has changed your life!

I'm rooting for you! You've really been through a lot.
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Marisa
February 2010 - diagnosed with Crohn's disease.
January 2011 - Inflammation downgraded from moderate-severe to mild with no symptoms!
January 2014 - adopted a mostly Paleo diet
May 2015 - still in remission!


Currently Taking
Humira - 40mg/week
Imuran - 125 mg/day
Calcium magnesium citrate
Fermented cod liver oil/butter blend
Culturelle probiotics
Vitamin D
Vitamin C
Biotin
Allegra
02-13-2011, 06:48 AM   #7
Welsh-bird
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Hi Amy. So sorry to hear thing's are going tits up again for you. You really have been through it and are long overdue a break now!!
Hope the foam's started to give you some relief, and hoping that come Friday your GI can get some new plan of action for you. This disease bloody stinks!!
Take care- and you sure came to the right place to vent! I've learnt that there's always someone around to listen and give advice here- helped me on numerous occasions.
Thinking of you and sending a big virtual hug x
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Diagnosed UC 1999, Re Dx'd CD April 2011, Gastritis Dec 2010.
Resection Jan 2011, Total Colectomy 18.03.2011
Hoping to get a break sometime soon......
02-13-2011, 05:12 PM   #8
Dexky
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Good luck on Fri. Amy!! Whatever you decide, I hope it leads to some long lasting relief for you. You very much deserve it!!
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02-13-2011, 05:14 PM   #9
Crohns08
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Lots of hugs Amy! I was right where you were just a few months ago. I hope whatever you choose that it finally brings you relief!
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02-13-2011, 10:19 PM   #10
ameslouise
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Hi Everyone and thanks for the support! I guess the part that scares me about surgery is that I already have no colon - if they take my pouch, that is the equivalent of 30cm of small intestine.... how much more can I live without and how will it affect my life? And what happens if the Crohn's come back after that??? I realize I am getting ahead of myself and I should just calm down until after the scope.

It's just amazing to me how quickly I can go from feeling good (love you/hate you pred!) to being back to square one - and how quickly it affects my mental health. I totally had a breakdown today. I just cried for ten minutes, and i haven't done that in a long, long time.

My husband suggested I take a nice warm bath. Which was wonderful. Until I SHIT in the water! Ugh!!!!!!! Haven't done that since I was three years old!!!

Thanks for listening - I'll keep you posted on what we find out Friday.

xo - Amy

PS I so want to call my parents in FL and have them come up to stay with me. I need a little Mommy loving, but it's kind of a lot to ask for them to drive all the way up here....
02-14-2011, 06:04 AM   #11
Dexky
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I'm sure your mom would at least want to know!! As a mom yourself, you know that too. Tell her what's going on Ames, then you may not need to ask.
02-14-2011, 06:37 AM   #12
Ian
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Oh Amy that sucks, I'm really sorry to hear you're suffering Hope you make some sort of progress at your appointment.

Probably a stupid question but have you ever tried Remicade? (I don't recall you mentioning it). I only ask because I'm not finding Humira all that helpful either but Infliximab did wonders for me the time I used it to treat acute symptoms. I have no experience of it as a maintenance drug though.
Or have you tried aza or 6mp with a biologic?

At what dose of Pred do your symptoms start to return when you're tapering? Is there no way you can stay on a low maintenance dose? I know long term use is undesirable but is it safer at lower doses?

Sorry, I'm probably not being at all helpful, just hate to hear someone being out of treatment options. If it comes to having more surgery, it at least sounds like you have a loving and supporting family around you which I'm sure will make everything easier to deal with. Hope you find some relief in some form very soon!

And I agree with Dexky, call your mom. It always helps!
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Dx Ulcerative Colitis Oct 2005 (age 19)
Dx Crohn's Colitis Feb 2010 (age 23)
Dx Indeterminate Colitis (IBD unclassified) Oct 2011 (age 25)
Dx likely Ulcerative Colitis July 2013 (age 27)

Currently taking:
6MP (75mg daily)
Asacol (3 x 800mg, twice daily)

Have taken: Humira, Infliximab (Remicade), Prednisolone, Predfoam
02-14-2011, 09:53 AM   #13
MADiMarc
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Dear Amy,
I turned 45 this month. My 70+ year old mom is coming to see me because I have been feeling blue. I am not sick, sick! Just blue. Call your mom. The healing power that is mom is a force not to be ignored! Besides, 4 or 400, we all needs our mom.
Michele
02-14-2011, 10:35 AM   #14
glum chump
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Hi Amy

How frustrating this all must be...I find it particularly hard when I've had a "taste" of what relief from symptoms feel like to all of a sudden not being able to do the simple things in life like take a [email protected]#%ing bath without messing up. Grrrrr! I feel so much of the frustration and anger you're expressing. I so hope that your doctor's appointment on Friday gives you some of the answers that you need to make the best possible decision for yourself. And jumping ahead is not such a bad thing...I see it as my Preemptive Readiness Plan!

My mom and I are close to Michele and her mom's age. My mom just sent me a care package of food, and every couple of days, she asks me if I want her to come see me. I know that if I was getting surgery, she would WANT to be here in a heartbeat.

I hope that you're able to reconcile your feelings and feel okay about asking her to come for a visit for you to have some mommy-love. Ain't nothing like it!
02-14-2011, 01:32 PM   #15
Cat-a-Tonic
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Amy, that really sucks that your symptoms have all returned again. I agree with the posters above me, at least call your mother. Even if she can't physically come to see you, she can provide some support and warmth over the phone. And if she can come, even better!

I hope the cortifoam gets you some relief until you figure out what to do next. If you're worried about surgery and possibly losing too much bowel, I know that DustyKat's daughter Roo has short bowel syndrome because of her resection, so you might want to reach out to Dusty (or hopefully she'll see this thread) so that she can reassure you and give you advice if you do go down that avenue.

Good luck, I really hope whatever you do that it leads you to relief and remission.
02-14-2011, 04:43 PM   #16
ameslouise
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Thanks everyone for your continued support and kind words!!!

Ian - I was on Remicade after I was first DX and had a bad reaction. My doc doesn't think Imuran or 6mp are stong enough for me. But we'll talk about exhausting all of those too before surgery I guess.

This round of pred, I was good up until 2.5 mg before all the symptoms started returning. Now I am suffering symptoms and some pred withdrawal too with fevers and joint pain. Ugh!

I'm off to call my mom right now!!

- Amy
02-14-2011, 04:52 PM   #17
endibd
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Hello all - Just needing to vent a little. Did I come to the right place?

I've had it. After three years of dealing with the Crohns, trying the "natural route" (which was excrutiatingly difficult AND expensive), Humira for almost a year, Metho for four months, nothing has changed....I'm finally off the prednisone again and all my symptoms have returned with a vengence. F***!!!! It seems the Humira and the Metho aren't doing squat and the only thing that keeps my symtoms under control is pred.

I feel like my body is revolting against me. I do everything right and nothing helps. I'm right back to square one where I was three years ago.

My doc is going in on Friday to take a look and see what's going on. I'm to start on cortifoam on Monday to tide me over until we can figure out the next step. I have a feeling surgery is in my very near future. I just want the pain and the urgency and the accidents to GO AWAY.

Thanks for listening. I feel really defeated.

- Amy
Keep this in mind...

There are 2 ways to affect change in the human body. Everything, everything the body does is based on electrical signals, ie the exchange of electrons.

Now consider this. Those electrical signals can be initiated in 2 ways. The first way, is a particular cell in the body receives a stimulus from its immediate environment. For example something the cell perceives and reacts to, initiates a response, like an invading bacteria, something rubbing against it, and so on.

The second way that something can happen in the body, is still through the means of electron exchange, but initiated by the brain itself. Ie stress, thoughts, etc etc.

You could be thinking yourself into it somehow. Keep happy.

We're all really made up of nothing but energy.
02-14-2011, 05:15 PM   #18
ameslouise
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End - I think you are saying "mind over matter" but not quite sure if that's what you're getting at.

You need to know that I am an EXTREMELY positive person, especially when it comes to my disease. My feeling defeated is a result of three years of doing everything I can possibly can, doing everything right and still my body betrays me. Even the most positive of us can start to get beaten down, there's only so much you can take.

So with all due respect, please don't tell me that I am "thinking myself into it" somehow. I find that insulting.

- Amy
02-14-2011, 05:45 PM   #19
AZMOM
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Amy - I hope your Mom comes running! Or at least is on high alert.

I'm still relatively new on here and trying to get everyone straight. But even as a newbie, I can tell you have been through the wringer.

I'm hoping for good things for you tomorrow.
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Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
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02-14-2011, 09:36 PM   #20
tiloah
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End - I think you are saying "mind over matter" but not quite sure if that's what you're getting at.

You need to know that I am an EXTREMELY positive person, especially when it comes to my disease. My feeling defeated is a result of three years of doing everything I can possibly can, doing everything right and still my body betrays me. Even the most positive of us can start to get beaten down, there's only so much you can take.

So with all due respect, please don't tell me that I am "thinking myself into it" somehow. I find that insulting.

- Amy
Sometimes you just need to vent. And where can you vent if not here? I once was on a forum (not crohn's related) where the people on it thought I just felt sorry for myself all the time and was incredibly negative. When in reality, being able to vent on the forum allowed me a space to get it out, so that I didn't drag it in to my real life.

Vent away I say! That's what this is for. And even if you *were* negative, I don't think there would be anything wrong with that. You're going through some stuff so I think it's totally acceptable (and being cheery all the time is not normal).
02-14-2011, 10:40 PM   #21
endibd
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End - I think you are saying "mind over matter" but not quite sure if that's what you're getting at.

You need to know that I am an EXTREMELY positive person, especially when it comes to my disease. My feeling defeated is a result of three years of doing everything I can possibly can, doing everything right and still my body betrays me. Even the most positive of us can start to get beaten down, there's only so much you can take.

So with all due respect, please don't tell me that I am "thinking myself into it" somehow. I find that insulting.

- Amy
Wow you're pretty negative there. Take a comment and make it seem like it's an insult to you.

I'm not saying mind over matter, but something quite different, mind is matter. The way you look at the world is often akin to the way your body reacts to the world. Inflammatory, aggressiveness...your body and immune system will follow your mindset. It's just what happens.
02-15-2011, 02:03 AM   #22
MADiMarc
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Amy,
Keep breathing.
Like you, I am also a mostly positive, upbeat person. Like you when we have been through the wringer, it becomes a bit more difficult, I agree.
Did you call your mom?
Michele
02-15-2011, 10:29 AM   #23
dreamintwilight
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Not to get in the middle of all this, but I don't think calling someone out for being negative is going to make them feel LESS negative. I can understand how Amy would think you were suggesting she just needed to be more positive (when in fact she really is one of the most positive people on here!), but can also understand that you may have just been misunderstood in your response.

Either way, I find a more helpful response would have been to just apologize for the misunderstanding and try and find a better way to explain yourself. Calling someone negative isn't conducive to making them want to be more positive, if that is what your point was. It just makes them defensive.
02-15-2011, 12:09 PM   #24
endibd
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You could be thinking yourself into it somehow. Keep happy.
Ok, this is what I wrote, then I got told I was insulting. I don't see it. I said keep happy - anxiety, stress, worrying, all can be factors in disease and someone's well being.

I only said that someone was negative, after they took an ambiguous general statement and twisted it that I was being insulting, and I'm not going to apologize for that.
02-15-2011, 12:42 PM   #25
dreamintwilight
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"Keep happy" doesn't cancel out the fact that you told her she could be thinking herself into it.

She started the thread to get some support and to vent. Your statement was basically implying that her current state of health might have been due to the fact that it was her own doing. That is insulting.

Anyway, I'm not here to hijack Amy's thread. You are more than welcome to hold your own opinions and beliefs, but when someone is in need of support I think any and all of the responses that follow should include that supportive sentiment.
02-15-2011, 01:00 PM   #26
endibd
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"Keep happy" doesn't cancel out the fact that you told her she could be thinking herself into it.
They're still both true. Your mind is very powerful.
02-15-2011, 01:15 PM   #27
David
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Amy,

I hope you feel better soon!

Everyone,

Please keep it civil. We're all here to support each other Thanks!
02-15-2011, 01:36 PM   #28
ameslouise
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Thanks, everyone. Sorry this turned ugly. Let's just drop it all so no one else gets insulted or misunderstood.

I'll post on Friday when I am home from the hosp to let you know the results of the scope.

- Ames
02-15-2011, 08:23 PM   #29
Dexky
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Amy, those who mind don't matter!! Anyone who's been on here very long knows how positive you are!! Sometimes your positivity has amazed me and frankly has confused me on more than one occasion. I've thought you were much better off than you actually are at least twice now. Crohns has not put out your light!!
02-15-2011, 08:41 PM   #30
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Amy! So sorry I missed all this! I wondered how you are doing and you are possibly heading for surgery! Well I have had 2ft taken out and so far now I am ok. Switching my meds and other natural stuff. Some work some don't. My body rejects everything (except fat!). I was sure 3rd surgery was coming but so far no narrowing. Hope you get relief soon, you have been through enough!

Hugs and all the best!
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