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Thinking of you, and wishing that it was easier for you, hon! :ghug:
but yay for pseudo polyps and sinuses!

Wishing she is feeling better quickly...:heart:
 
Guess what - I have my girlie home ! For a whole week !
Momma's happy :)

She started her Imuran today ... Crossing my fingers that it works and she doesn't get any awful side affects !
 
I can see you doing the HAPPY dance! :banana: :banana: enjoy every minute with her! :thumright:

Shhh... No negatives thoughts re imuran!!! All will go well! :Karl:
 
Awe thanks Tess ! :hug:

Honestly, the only side effect I am really thinking of is hair loss.
She seems to have a history of losing a lot of hair with new meds, and her hair has finally grown back in and looks so gorgeous again! I'd hate to see her lose it again ya know.
But you're right ~ positive thoughts only from here on out !! :)
 
Well T if it helps at all...... Methotrexate did positively ZERO for Claire's JRA. Ironically, now it seems to be doing the trick (along with the rest of our cocktail).

Sometimes 2+2 CAN = 5.

Big hug!!!

J.
 
T, I'm sorry to see Gabs is still going through so much. Glad she's still got that awesome sense of humor though. I know it lightens your load immensely:) Merry Christmas!!
 
Yay for home T!!!! Sooooo happy for Gab that she will get spoilt and sooooo happy for you that you get to eyeball her for a whole week! :poop::poop::poop:

Imuran! Well I know that cause of your other thread. :wink: Just takes me forever to catch up...:yfaint:...must be the fecking dementia, I just keep answering the same posts over and over and over! God I hope it does the trick for her mate, I am wishing so hard I reckon I am fit to burst!

Sending loads and loads and loads of love and luck that nothing but good comes your way! :goodluck:

Onwards and Upwards!
Dusty. xxx
 
We had a successful Christmas morning :)

Barely got Gab to wake up and join us for gift opening - she's very happy with her new iPad - and now she's been back in bed the whole day. Poor girl is feeling awful today :(
I don't get it ...
 
:(Sorry to hear about Gabs.:hug:
Grace is still ill but happy to have her Cinderalla doll to sleep with. Strange Christmas that's for sure! Still try to enjoy it!
 
Oh no T...:ghug::ghug::ghug:...I can well imagine how heartbreaking this is for you. :(

I hope more than anything that Gab is soon able to get on top of things again, bless her. :heart: Seeing your child sleeping all the time is bad enough but at this time of year...well it just makes it all the worse.

Thinking of you guys and sending loads of love and healing thoughts your way. :heart:
Dusty. xxx
 
T, so sorry Gabbie wasn't feeling well yesterday :ghug: :ghug: Hoping today's a better day for her!
 
Good luck with the 6mp Sascot !

Thanks everyone for the well wishes :)
She's not feeling any better, but she's doing "ok". She seems to think she may be getting the flu, or having some sort of allergy issue - sure hope it's not the Imuran :/
 
Oh T...:ghug:...I hope it's not the Imuran too. :(

How is Gab now? Any sign that she be right about flu/allergy?

Thinking of you both. :heart:
Dusty. xxx
 
Thanks Dusty !
I just got home from work and she had slept all day :(
We're gonna take her out to eat, and she's gotta go back to her apartment for the weekend because of work. I tried to talk her into calling in, but nope.
She called her GI office today but didnt get a call back. Hopefully it's a cold and ANOTHER round of antibiotics will knock it out.
This poor kid needs a break already!
 
Oh man T, she surely does...:hug:

I hope they get back to her soon. She is one strong and inspiring young lady but she is well overdue for Lady Luck to pay a visit.

Dusty. :heart:
 
So she now has a very large lymph node in her armpit. It's kind of tender (thankfully?)
This IS because of possible infection/flu/cold right ??

Still no return call from the GI's office, and her GP is on vacation until the 7th, and the schools clinic is closed as well for the holidays ~ ugh !
 
Is there an oncall Gi since its evening????
DS had a pea size sore lymph node in his arm pit earlier this year- I freaked
Ped checked it and declared him just fine - he didn't even have a cold then but had one earlier so ......
Hugs
 
C had a swollen lymphnode after starting remicade but it was located under his chin, I freaked too, MLP) but GI said it was fine. C later tells me, oh that lymph node swells when my allergies act up all the time...oh good to know now son since you've had allergies your whole life!! Hugs!
 
Im following along and praying for Gabs. Keep us posted. And YES that lymph node WILL be because she's been sick. Think how much better you'll feel when the doc agrees.

Love you -

J.
 
WorryKat here T! Worry, worry, worry...remember that! :lol:

If Sarah or Matt had a swollen lymph node I would be freaking too BUT in view of what she has been going through lately I would just console myself with rocking in the corner and NO not plucking my eyelashes out BUT chanting, this is normal, this is normal and all the while doing funny little gestures with my hands to ward off the evil spirits!

I'm sure all will be well T but I will say a chant for you just the same! Good luck mate, sending loads of love and healing thoughts your way!

Dusty. xxx
 
Her "cold/flu" symptoms seem better today - to me at least :)
She came back home last night and showed me the lymph node this morning, and it is indeed very large. However she also has one in her neck on the same side (left) - which leads me to believe it is due to whatever cold/virus is making her sick this past week.
We'll still inform the GI of course when they are back in the office, and keep a close eye on it - better safe than sorry :)
 
It surely is T...:hug:...Good luck and gentle squishy hugs coming your way. :heart:

Dusty. xxx
 
Dusty, I was chanting in the corner too...poor family of mine they weather on while I do my freak out dance in the corner!!! Then C goes and tells the doc "Oh yeah it always swells when my allergies act up.":facepalm: Gee thanks C, could've told me that before I took my last valium to get me through:D

Crohn's Mom, I do remember our GI saying that he tends to see more swelling of the lymph nodes with viruses and such with his kids on biologics/immunosuppressants. He may have said that to save my sanity but it worked, well on what little I have left anyway:tinfoil:!! Glad to hear she is doing a little better. There is a right nasty bug going on around here right now and I'm praying it doesn't find our address!
 
Somehow I missed the updates on your post...hoping that she continues to feel better and that the lymph nodes are gone in no time! :ghug:
 
Hope she is feeling better now. More than likely a virus/bug of some description if she has enlarged lymph nodes. Happens to me every now and again - doctor never seems concerned.
 
How is Gab going T?

Loads of love and healing thoughts heading across the pond, :heart:
Dusty. xxx
 
Ok, this whole "letting my kid take over their own health" thing is really not good for a control freak natured mother ! :lol: Dustykat, do you have any eyebrows left ? I'm gonna start on my toenails next ! :rof:

Anyhow, Gab just updated me (she has been back to school for a week).
She said the lymph node has gone down (yeah!), and no fevers lately.
She says she's still extremely tired all the time tho.
Also, she said the fistula/sinus tract (whatever it is! ) is now opening back up again !! ARGGh ! She has called her IBD nurse and spoken with her today, and she (the nurse) is supposed to talk to her doctor AND her surgeon :eek2: and call her back.
She also said that if it starts leaking again than they will want to do a dye test to see where it is leading. :voodoo:

I've been trying to give her "space" and not ask questions regarding her health every single day. So I have waited a whole week. (longest week of my life! LOL) and this is the update I got today.
I am so proud of her that she has made the phone calls needed on her own, and didn't procrastinate tho ~ and I didn't know about it until AFTER she took care of it ! I have to say tho ~ this is much harder than I thought it would be! :rof::rof:
 
Lots of hugs going your way... hope you hear 'it's nothing' very, very soon!!!!

And, with you re letting them start to take control and taking a step back... I'm trying but am grasping that 'control' like a lifeline! :lol:
 
Sounds like she is being very organised and looking after herself well! Don't know how you do it! Dreading the day Andrew takes over - what if he makes a decision I don't agree with :ywow: :ylol2:.
 
Ughh....I can't believe this (well, maybe I can :yfrown: )

Gab is sick and on antibiotics (z-pack) AGAIN !!
She went to the clinic today and she has a sinus infection they say.
Whoever she saw insisted she get a flu shot today as well.
Now, she says she feels worse this evening and her fever is rising !
"I feel HORRIBLE" were her exact words...

I've told her she needs to call her IBD nurse tomorrow morning and inform her.
This is absolutely ridiculous ~
and before I express how I feel about this with a bunch of not so nice verbiage, I will leave off here...:eek:utahere:

:voodoo::voodoo::voodoo::voodoo::voodoo:
 
(((((:)ghug:))))) Lots and lots of hugs to you and Gab!!! Poor thing, she soooo deserves a break!!!

I hope she gets over this quickly! :ghug:
 
Oh no, what a shame. There seems to be alot of horrible flu-like bugs this year. I find it strange that they made her have a flu shot while she was actually sick. Hope the antibiotics work quickly!
 
Oh T, poor Gab...:ghug:...she needs a break already! :(

And you too Mum...:ghug:...I know you are feeling her pain as your own.

In my thoughts, always. :heart:
Dusty. xxx
 
Gab says the sinus infection is getting better - however she still feels terrible. :(

She is scheduled for a surgical consult on March 4th ( the day after her 20th birthday - go figure)

How is it that none of these meds are working for her ??
I just can't wrap my head around it 😖
 
I'm so sad that she's still having all these tough times... crohns and otherwise! It really is so unfair that she just hasn't gotten a break! :ymad:

I know everyone's different but... my aunt had a horrible time when she was first diagnosed (over 10 years ago), they tried lots of meds, her GI sent her to other GIs because he'd run out of ideas, etc. She lost tons of weight and couldn't eat anything, etc. It took a year or so to get her crohns under control but since then, she really has been fine! I don't know all that she's tried (unfortunately, there's a bit of a language barrier...have to count on my mom to get details :yfaint:) but she eventually tried remicade, it put her into remission, she stopped remicade (don't know why) and has since been on imuran and low doses of cortisone (not sure why 'cortisone'???). But she has truly, truly been fine for years now!!! She watches what she eats but is not on a strict diet, she regularly eats out at restaurants, travels all the time, etc. and looks and feels good!

Gabby WILL find her miracle treatment!!! You and Gabby are both so strong (and I'm sorry you've needed to be)!!... just try to be strong a little more... :ghug: :ghug:

Sending lots of wishes that things will turn around! :ghug:
 
She's getting worse :(

She called and said she just cant stay awake. She said she got plenty of sleep last night and woke up today feeling like she hasn't slept in a week. Drank an energy drink (bad i know), went to class and kept dosing off and can't concentrate. Went to the next class and same thing, and she's feeling really nauseous, so she left and went home to nap. Woke up feeling the same, and drank a 5 hour energy drink (uggh !) and it still didn't help any.
She said if she's doing anything that requires her to move than she starts sweating like she's working out.
She is also feeling somewhat short of breath.

Her words were "Mom, somethings really wrong with me".
She also said, "if someone were to know what it feels like for their body to be slowly shutting down, I think this is what it feels like"


I put a call into her GI doctor for her because she asked me to do it.
Hopefully he will call back today.

Personally, I wish they would admit her and figure out what is wrong with her...Crohn's or otherwise. My instincts are screaming that something is very, very wrong.
However, my over achieving, stubborn daughter says she can't possibly even go for even an appointment to be seen until Monday, and only Monday.
:ybatty::ybatty::ybatty:

I understand her dedication to her education and responsibilities but I can't seem to impress upon her how extremely important it is for her to realize that her health comes FIRST !
This is killing me. I'm so scared something terrible is going to happen and she will be so much worse off :(

I'm sorry...this is a vent I guess and I feel so out of control with this situation.
:(

edit: oh, and she's really pale, her skins breaking out and she has lots of bruises all over she said
 
Oh no! I can understand you being so worried. I really hope the GI calls you back soon and gets her into hospital to get checked out. What a shame, she is trying soo hard to get on with her studies. Hopefully the sooner they can find out what's wrong the sooner she can get something to get her better. Sending lots of hugs!
 
I wish I could give you a hug and really be there... I can imagine your worry!!! Is there any way you can go stay with her for the weekend or visit for the day?

Sorry, no idea re the imuran??? :(

What are her iron levels like? With mine being so low lately, I really felt it with any physical exertion, ie. when away, we had to climb 65 steps (I know the number as it had something to do with the tour :)), by the time I got to the top, I seriously thought I was risking having a heart attack - my heart was racing, I was sweating and could not catch my breath! Same thing has happened a few times lately whenever I had to walk up a hill, walk up two or three flights (unless I went really slowly). GP said it was all due to my low iron levels.

It may not ONLY be her iron but, if she is anemic, it could be contributing to her symptoms.

:ghug: :ghug:
 
Fevers are creeping up ~ 99.3

she also just admitted to a lot of pain in her lower right side and has been using Icy Hot for the past 3 days ( I had NO idea) to try and ease the pain...

ARRGGHHH...
I told her I'm about to come there and drag her back myself ! LOL
I have to find something to be positive about ...

She's CALLED me twice today ~ she NEVER calls me ...

Tess....YES, I do believe she has probably become anemic again ~ I am hoping to get an answer from that from her GI tomorrow since she just had her bloods drawn the other day. thank you :)
 
So sorry Gabi is feeling so bad. I can't imagine the stress of her being sick and not being there. I will probably experience it soon enough and I know my instinct would be the same. Pack and run! Totally off the wall and maybe unrelated, could she have mono?

I hope you get her admitted or something so she is recovering soon!

HUGS!!!
 
JM, thank you..

funny thing (and please don't take this the wrong way...) I was explaining it all to my husband tonight and his response was " Could she have Mono?".
well...my response was..."Don't you ever mention the word Mono again with Gabrielle to me in the same sentence!" LOL

The reason for this is that is exactly how Gab's diagnosis started. Of course there is no way you could know this, but my hubby..oh ya, he knew ! LOL.
I spent 8 months "doctor hopping" and fighting them all, while they were telling me that she had "chronic mono" and nothing else was wrong. So...even tho you couldn't have known...that word Mono sends chills down my spine :)

So...long story short...no it's not mono :)
I can definitely see how her symptoms could lead one to believe that is the case tho !!
 
Oh T! :hug::hug::hug::hug::hug:

As Tess has said, shortness of breath is a sign of anaemia. The sweating may link in with the fevers. :(:(:(

Okay, me being the queen of make your kids independent...not! Go to her T, you need to see her and you may need to take some control. I am in no way saying that Gab can't handle this but sometimes when you're ill it's nice if someone else comes along and takes charge. You know you need take the step to get yourself seen but you just can't do it but someone you love and respect does it for you and you follow along, know what I mean?

Also you know what our IBD kids are like. They are strong and independent and never want to be a bother. She is ringing you T but probably doesn't want to say to come to her. Just ring and tell her you are coming, it will never be a wrong decision.

In my thoughts hun. :heart:
Dusty. xxx
 
I tend to agree with Dusty. Until you can hold her hand and look her in the eye, you're not going to be able to concentrate on anything else! Thoughts and prayers T!
 
I think you all are right - I will try and go see her this weekend :)
We were scheduled to meet half way for lunch Monday and I took the day off work to spend with her, but I don't think this mommas nerves can wait that long lol.

Still no call back from the GI :(
 
I was the exact same way when I was super anemic in college. I would wake up for class, go (muster through walking up the stairs and to/from class), come back and sleep til my next class. I was literally sleeping 16 hours a day or more and still tired.

My levels at that point were 8.8.

It could also be worth a liver enzyme test to check on the Imuran thing. How long has she been on it at this point? I would say it could either be a reaction (if shes been on it for 1-6 months (the activation time of Imuran)) or it could just be that her body isn't metabolizing it correctly. I was on Imuran for years until I stopped producing the correct levels of the good Imuran and was producing more bad Imuran. They used Allopurinol to trick my body into correctly metabolizing it.

Here's my post from a long time ago that explains the whole Imuran deal:
katiesue1506 on 2-9-11 said:
The liver processes the Imuran in to one of two things: 6MMP and 6TG. Now some people metabolize it entirely into 6MMP-- this is what causes Alkaline Phosphate levels to rise in the blood and causes most people to be taken off for too high liver counts. Some people metabolize it entirely into 6TG and 6TG is what is good for fighting Crohn's, but it also lowers the white cells in the body (which is okay if they are being monitored and are at a decent level). 6TG is what controls the T-cells in the body. Most people metabolize Imuran into a mix of both.

This is why you have to get blood tests so often on the drug. Depending on how your body metabolizes it, you may have different symptoms. I'm currently producing wayyy too much 6MMP on Imuran, and not enough 6TG. A way to fix this is to "trick" the liver into producing mostly 6TG through a secondary medication known as Allopurinol.
Click to expand...
 
Thank you Katiesue ! your insight is always so helpful :)

The GI doc just called and he agrees with me that he needs to see her asap ~ so seeing as how its the weekend it will most likely be Monday.
He also said that they haven't received any of her blood results since she has started Imuran !! That frightens me ! So shes gonna have to call the lab where she had them done and have them faxed immediately !

Somehow, knowing that he agrees with me that her symptoms can't be put off ( and the only things I told him about was the extreme fatigue, sweating, and pain) , calms me a bit. I wish she was being seen today, but as long as she can stay stable I will be ok with waiting till Monday. I am however going to talk to her (she's sleeping and not answering my call) and pretty much demand/beg her to come home for the weekend so that I can keep an eye on her and assess her myself.
 
T!!!!!!!! I was behind. :(

Glad you're getting that girl HOME.

I'll be praying and waiting to hear......


Send her a hug from Claire.

J.
 
:hug: Glad she is coming home
Please have her read the warnings about 5-hour energy- A real DANGER for even kids without other issues.:eek2:

The dispute over 5-Hour Energy’s claim also comes as regulatory review of the high-caffeine drinks is increasing. The Food and Drug Administration recently disclosed that it had received reports over the last four years citing the possible role of 5-Hour Energy in 13 deaths. The mention of a product in an F.D.A. report does not mean it caused a death or injury. Living Essentials says it knows of no problems related to its products.

The issue surrounding the company’s “no crash” claim dates to 2007, when National Advertising Division began reviewing all of 5-Hour Energy’s marketing claims. That same year, the company conducted a clinical trial of the energy shot that compared it to Red Bull and Monster Energy.

At the time, Living Essentials was already using the “No crash later” claim. An article on Wednesday in The New York Times reported that the study had shown that 24 percent of those who used 5-Hour Energy suffered a “moderately severe” crash hours after consuming it. The study reported higher crash rates for Red Bull and Monster Energy
Click to expand...

from:

http://www.nytimes.com/2013/01/03/business/5-hour-energys-no-crash-later-claim-is-disputed.html?_r=0


The federal government and the New York Attorney General's office are investigating after the Food and Drug Administration received claims that the drink 5-Hour Energy may have led to 13 deaths and 33 hospitalizations over the past four years.
Click to expand...

from:
http://abcnews.go.com/Health/hour-energy-drinks-cited-13-deaths/story?id=17725137
 
Thank you MLP !
I sent her the link in an email ~ I can't stand that she drinks those, or monsters, or any of the kind ...however, I do understand why she does unfortunately.
I am consistently complaining to her about those drinks, so I am sure the new email will be nothing new to her from me ! LOL
 
:yfaint::yfaint::yfaint:

So sorry! I had no idea of your history with that "M" word! I only mentioned it because I had it in college. I was treated several times at the infirmary for colds/bugs, but never got better. I just slept for weeks until my Mom came and got me and took me home and to my Dr. It just sounded so familiar.

I am SO glad she is coming home ...and going to the Dr. Mom's intuition is right!

Hugs! Hope you get some answers soon.
 
It is sooooooooooooo good to hear Gab is coming home. :):):) What a relief for you T. :):):)

I so hope all goes well with the appointment mate and you get some solid answers. Sending loads of love and healing thoughts your way! :ghug:

Dusty. :heart:
 
Thank goodness she's coming home. Probably feels like she's needing a bit of looking after just now! Hope she stays stable over the weekend. Good luck with the appointment on Monday.
 
Thanks Tess :)

There was a misunderstanding I guess and so we didn't get to go in yesterday :/
Her doctor called and apologized and promised to get her in this week to see him.
So, his secretary called already this morning and looks like we will be heading there tomorrow afternoon; just waiting on confirmation.

I was too mad to update yesterday lol; I've found it's better sometimes to hold my tongue if I can :ylol:

Doctor did finally get her last 2 blood draw reports tho, and said everything looked good ~ including her iron levels.
Last one was done 2 weeks ago, so that could be different now as far as possible anemia causing her issues, but we shall see i guess.
He said even tho her bloods look good, he's no fool and realizes that she is on two major immune suppressive meds and whatever is going on with her needs to be checked out asap.
 
Good luck tomorrow. It must be good to have her at home - I think it must be so hard to deal with everything when you can't actually see her for yourself. My son will be going off to university in Sept. and that's what I fear the most - having him not feeling well and not being there to see him in person and assess for myself ('cause I will always imagine the worst!). Thinking of you...
 
How frustrating! :voodoo: but am glad she's seeing him tomorrow! I'm hoping she's feeling a bit better now that she's home with you and being properly spoiled! :thumright:
 
I'm glad we went ~ what a truly caring doctor she has :)

In short (because momma's tired), he ordered a bunch of blood tests, chest X-ray , urine test, and stool tests.
We had them all done before we left the building !
I guess it's one positive to having CD huh ? Stool tests done on demand ! LOL

Seriously tho, that's one of her "newer" symptoms is constant bathroom trips, so we were able to get the stool tests done before we left there. Saved me another hour and a half trip, thankfully.

Doc said he's going to get this taken care of because quite frankly she deserves to feel healthy, and she's been through enough, too much. Bout made me cry when he said that because you could feel that he meant it.

So now we wait..
Except..I already can see her blood results online :)

Here are some "low" levels ; and in my mind even tho they were "fine" 2 weeks ago, are pointing to anemia now. Of course I will wait for the other tests to come back , and have the doctors take on it !

Ferritin 6 (normal range 11-307)
MCH 32.8 (normal range 33.1 - 34.4)
CRP 1.1 (norm range 0.0-8.0) (not too bad ~ but a little inflammation none the less )

there were many other tests run but these were the ones that caught my eye.

We shall see I guess ~
She is staying the night tonight due to being exhausted, so I am happy to have her home with me :)
 
I know you are glad to have her home with you. I hope she gets to feeling better soon. Sendings hugs and support your way!
 
Ferritin is also a marker of inflammation. Sarah had one reading of 80 a month prior to dx when the gi told her levels were actually close to zero.
 
The doc does sound good, so nice when they seem to actually be trying to help. Hope the tests come back soon so they can move forward with a plan to make her feel better!
 
Hey T...:hug::hug::hug:

It so damned good to hear that the appointment went well and that Gab has such a caring and insightful doctor. It really must help ease your mind when she is away from the nest. :)

Do you have any other results yet?

Thinking of you both, always. :heart:
Dusty. xxx
 
My mom can definitly relate to what you have gone through.I was diagnosed with crohns at the age of 6 and I know it can be tough watching your child go through so much..I just wanted to commend you for being such a good mother.Until this day my mom has never missed an appointment and im 22 and in college lol.I hope everything works out
 
Oh jessica22, your so sweet. It's words from children (adult now) with IBD, that gives hope to us parents!

HUGS
 
That makes me feel so great and coming from someone who had strokes,seizures and bloodclots all before the age of 13 there is light at the end of the tunnel and i'm so glad that I can help encourage others :)
 
sorry I haven't updated...I just don't have much positive to say, so I have held off.

Gab is not getting any better ~ slowly worse.
She has been on antibiotics twice again, just in the last few weeks.
They did blood work again and her white blood counts are high now.
She also has two golf ball sized lymph nodes in her neck, one on each side, they don't want to go away.
The pain in her lower right side is intensifying as well.
And now, to top it off, she says she is getting very dizzy lately and has once blacked out for a few seconds when she turned her head to quickly. Also, her thoughts are VERY scattered and her short term memory is horrible.
She called me the other day after she went to the school clinic because she couldn't remember where she parked and we talked on the phone for 20 mins. while she looked for it.

I had started another thread on Imuran and allergic reactions because we weren't sure if she was having one or not.
She went off of it for about a week, and then tried to resume it, (per doctors orders) and she is definitely become allergic. Her throat started to itch badly, and her face, and her chest was feeling heavy within hours after taking it.

Just don't know where she's going to go from here at this point.
We have several appointments on the 4th to see her surgeon, her GI, and her GI nurse.

Oh and the lovely ulcers have returned in her mouth and she said she feels like they're in her throat as well...:ack:
 
Gosh, Tracy, I'm so sorry to hear that Gab isn't doing better! :(

I would imagine the dizziness and memory issues are related to deficiencies (ie iron deficiency can cause mental 'fuzziness'), I know I've asked this before (but, age brings about it's own 'fuzziness' :)), would she now consider EN supplementation (or, even better, a few weeks of exclusive EN)? Won't take away all her issues but may help with some???

I'm not sure about this but are imuran and methotrexate interchangeable? I know there are slight differences in how they work/what they do, perhaps she could tolerate metho better??

I'm thinking of you... it's got to be so hard and frustrating to not see her get better yet! Lots of prayers for you and Gab that the apptmt on the 4th can bring some treatment plans!! :ghug: :ghug: :ghug:
 
Hugs
Second the Mtx -- not sure did she try that one.
DS had a bad experience with it but other have been good.
Hope the docs can come up with a good plan.
 
I'm sorry things aren't going well for Gabs, T!! She's been through so much. Has she done scopes since the stoma takedown or any other imaging?
 
So sorry to hear she is not doing very well. I hope they manage to come up with a good plan next week - glad you don't have to wait much longer.
 
Oh man T...:hug::hug::hug:

I am so gutted to hear that Gab is going through all this. :(:(:( You are both in my thoughts as always hun.

Loads of love, :heart:
Dusty. xxx
 
Also sorry to hear. Low B12 can also cause memory problems
Click to expand...

She takes 1000mg B12 a day ~ I wonder if it's enough ?


I'm sorry things aren't going well for Gabs, T!! She's been through so much. Has she done scopes since the stoma takedown or any other imaging?
Click to expand...

Thanks Dex. She had scopes last June that showed her CD was back (mildly) at the resection site. She had an MRE in December that basically showed the same thing.

Hugs
Second the Mtx -- not sure did she try that one.
Click to expand...

She hasn't tried Mtx because she is of child bearing age so they wanted to try the Imuran first. Maybe that will be the next plan?

I would imagine the dizziness and memory issues are related to deficiencies (ie iron deficiency can cause mental 'fuzziness'), I know I've asked this before (but, age brings about it's own 'fuzziness' ), would she now consider EN supplementation (or, even better, a few weeks of exclusive EN)? Won't take away all her issues but may help with some???
Click to expand...

She has started an Iron supplement, but maybe it's not working yet ? She sent me a picture via text the other day of her eyes ~ they're so dark underneath they're almost black :(
As far as EN, that's a no. However, she has started cooking every night for herself, and shopping mostly at the whole foods store and she said that she is seeing some results ; at least with her stools finally being formed.

I am so hoping for some kind of answers and solution tomorrow when we meet with the surgeon. Maybe a fresh set of eyes will "see" something that makes sense ?? At the very least we'll know if she's facing surgery again for the fistulas. (they have opened up again now that she has been tapering the Entocort).

Thanks everyone for the hugs and well wishes ! :hug:
 
Lots of hugs and luck for tomorrow's appointment; will be thinking of you! I hope you come out with some answers and a solid treatment plan!!!

Please update when you can! :ghug: :ghug:
 
I'm so sorry Gab is doing so poorly. I'm saying a prayer right now for her. I know when Jaedyn was at her worst, she had seizures and learning problems. It had a lot to do with nutritional deficiencies, I believe.
 

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