Flare-ups and frustrations!! PLEASE give me some advice, anything?

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Grumbly-Guts

Grumbly-Guts

Joined
Dec 31, 2010
Messages
59
Hi all
I have a question regarding my flare-up.
First here is a brief hx:
dx 2006, symptoms for 15yrs
med resistant, (allergic to methotrexate, disease has been too severe for pentasa, immuran. Steroid psychosis-no matter dose or route of administration, docs say I can't have biologicals as I am too high risk for major complications-plus the one and only time I took Humira I wound up with 6L of infected fluid in my belly resulting in 2months of drains and another surgery)
Currently unable to take any Crohn's related medication, only symptomatically tx
Have had 5 crohn's related surgeries in 4 yrs. (R hemi-colectomy, terminal ilium removed, 3 bowel resections, ostomy on and off, surgery to pull adhesions apart - keep coming back faster and worse,
Countless hospital admission for TPN
Hospital admissions for severe flareups
Anemic
Rheumatoid Arthritis
Short Gut Syndrome
(hate the name of this one) Dumping Syndrome
Peptic Ulcer Disease

So, my guts HATE me! lol
Back to my question, I am pretty sure I am flared up again right now (sounds weird I know but my flareups don't always present the same as previous ones), I have lost about 7lbs in the last two weeks (which I might add I cannot afford to lose as I am 5'11" and barely 120lbs), I am nauseaous alot and all meds are not working to combat, I have frequent and urgent trips to the bathroom, I'm very pale, eyes dark, skin breaking out, my bum is really really sore (missing skin in some places) and I am in a lot of pain with cramps, spasms as well.
Food is completely out of the question, all full fluids, I am maxed on my pain meds, and "mary-jane" is only keeping me sane at this point, can't sit down, my tummy is hard and I don't know what to do anymore!!
I don't know if I can deal with ANY of this anymore! I am so done with it!! Doctors constntly look at me and scratch their heads. Nobody can help me anymore and I am miserable! I cant go to the ER b/c my 2yr old son just had a mild surgery the other day. I can't get my cramps to stop, I can't get the bathrm trips to even slow down, my backside hurts so bad and have no idea what to do with that either!!
I have had it with this! And I don't know what to do anymore, even my tried and true methods of coping (heating pad and hot baths) isn't working.

:grumpy:
 
I am so sorry to hear all of this. My heart is breaking for you. I think all of us have probably had the "I can't do this anymore moment" but you can do it! Stay stong and keep asking questions of your doctors. I am sorry that I don't really have any better advise to offer. Good luck and hang in! Lots of good wished coming your way.
 
i am sorry to hear this i would say talk to mr ziggy he has gone through a stem cell transplant and he no longer has CD he is truley an inspiration idk how you feel about stem cell transplants but they took his from his own body and it requires some chemo...im actually considering it the next time i go into a flare b/c i know ill have a flare for a long time you will get through it and you will make it
 
I don't often suggest this but it has helped me....
google Jini Patel Thompson. She has a wonderful book - Listen to Your Gut. Here info has helped me. I also take LDN.

Hang in there. I have problems with the meds, too. LDN is working for me.

Wendy
 
mizgarnet said:
I don't often suggest this but it has helped me....
google Jini Patel Thompson. She has a wonderful book - Listen to Your Gut. Here info has helped me. I also take LDN.

Hang in there. I have problems with the meds, too. LDN is working for me.

Wendy
Click to expand...

Hey thank you all so much!!
I am going to look into this book now and try to order it, also what is LDN? I have never heard of it and what is it used for? Is it available in Canada?

Thanks again everyone!

GG
 
LDN is available in Canada, it is Low Dose Naltrexone and is a medication that works for some, there are quite a few posts on CF re LDN, look under the treatment section to find them.
The problem with LDN is finding someone to prescribe it for you as it is not FDA approved for Crohn's, I'm on the other end of Canada, but we originally got it prescribed from our Naturopath, once it started working for my son his GI started prescribing it. My son also has the Absorb Plus shakes from the Jini Patel Thompson website and they taste good and agree with him. We haven't really gone any further with the protocol Jini Patel Thompson has in her book and my son is doing very well with LDN and the Specific Carb Diet.

I hope you find relief soon, it sounds like you're not well at all right now - have you got some support with your kids?
 
I am def. going to start researching that medication! And am actually trying to track down the book by Jini, as well as look thru her site now that I know it exists lol, Thank you both so much!
As for my kids, I am home all day with them (daughter 11, son 2). My son is in the process of being dx autistic, so he's a little challenging at times. My daughter just recovered from encopresis and has IBD. On top of that I was doing college online, but am late to register as I have been ill. My mother thinks I should reg. for this semester but I just don't feel up to it, and have a feeling she will lose it at me (she pays for my tuition and I AM a 27yr old woman who still fears her momma lol thank god she lives in another province!) So as for help, not really. My son's father is here in the evenings, so it's a bit of help but I am still on-call with the kids 24/7 lol! I used to have home support, to help with housekeeping, cooking, for me to rest and help with the kids. But b/c i am not considered "disabled" under the gov. they cut my funding of 10hrs week. I don't know how to file for disabled status or anything about being labled dis. by the gov. I did see the thread on how to file for disability funding (is this the same?)

Anyway I think I have confused you enough with this reply (morning meds disorganize my thought process, comes out as a mess-sorry hehe)

I hope you all have a good Sunday!

GG
 
Hi Grumbly,
Hate to say it, but maybe it's time for a perm Ileo? I certainly did not want one, but I must say it certainly took care of my Crohns. Feeling so good now. I still take Humira to hopfully prevent Crohns in the future.
 
I would be lieing if I said it has never crossed my mind. I honestly think my reservation is purely not being ready to accept that yet. I know that it could make such a big difference in my life but my last experience was horrible! I developed an allergy to one of the pastes, my stoma shrunk right back in my belly (which made appliances difficult to take) I never slept, still had severe pain, struggled with weight and depression, and had to have it reversed early from a mistake causing an infection. It was brutal. But, I havn't completely discounted the idea.
And currently I am not a candidate for biologicals anymore due to past complications from them and future concerns, ( I am however getting a second opinion in Feb.)

GG
 
Grumbly-Guts said:
I would be lieing if I said it has never crossed my mind. I honestly think my reservation is purely not being ready to accept that yet. I know that it could make such a big difference in my life but my last experience was horrible! I developed an allergy to one of the pastes, my stoma shrunk right back in my belly (which made appliances difficult to take) I never slept, still had severe pain, struggled with weight and depression, and had to have it reversed early from a mistake causing an infection. It was brutal. But, I havn't completely discounted the idea.
And currently I am not a candidate for biologicals anymore due to past complications from them and future concerns, ( I am however getting a second opinion in Feb.)

GG
Click to expand...

Yes get a second opinion on the biologicals and the immuran. I have never heard of disease being to severe for immuran, unless you tried it and it didnt work. Have you tried it, or did they skip it because how severe you are. If you tried it and it didnt work that is one thing, but if they just skipped in entirely, I think that is weird.

I had a very severe flare before my remission a few years back. I was hospitalized, given flagyl, cipro, and cortisone by IV. I was there for a week and then they sent me home with pred and immuran. I weaned off the pred, and took the immuran. I went into remission in 3 months and kept taking the immuran for another year. I stopped taking it and had 3 more years remission. So immuran can help a severe flare in some people.

I am sorry your stoma experience was so terrible. If mine was that terrible I would be leery too. My stoma was really easy to take care of, I actually wont mind getting another one someday if everything else fails.

I just want to give you big squishy hugs, because I know how this disease robs you of being the women, wife and mother you want to be.
 
Last edited:
Lydia,
Thank you for the hug, it came just in time! Spent 24hours in ER yesterday for sucpision of C Diff, again! I took those damn flagyl and cipro and walah...Crazy D!
As for the immuran, I did try it when I had my 1st 2 surgeries and was on it for almost 6 mos. I lost a tremendous amount of weight, needed TPN and LIPIDS, and was so sick they had to take me off it. My docs will not allow me to go back on it (amongst other meds) as they react so terribly in my body.
So here I am with the couch, tv, remote, phone, laptop, bucket, pain meds and a bottle of Boost. And yet I find I am still lonely...LOL.
The perks of CD!!

GG
 
Oh Lydia I could kiss your feet!!! lol Seriously this is amazing, why has nobody ever told me this?!! Information that def. would have been helpful long ago! lol
Do I need an Rx for this? Where can I get it?

Thank you thank you thank you!
GG
 

Similar threads

T
Advice please I’m a newbie
Replies
11
Views
2K
Constipatedguy13
C
valleysangel92
Hello Old Friends
Replies
1
Views
478
my little penguin
my little penguin
K
So confused after apparent relapse
Replies
6
Views
2K
Opieshuffle13
O
T
Frustrated!
Replies
6
Views
1K
Tina M
T
D
PLEASE GUIDE
Replies
11
Views
2K
DEBANJAN HAJRA
D

Latest posts

Back
Top