It's all going haywire

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ameslouise

ameslouise

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I'm having a really bad day over here. Actually, a really bad week.

I started on Humira 5 weeks ago. At the same time, I am also tapering off the Prednisone, am down to 10 mg. I had been going guns-blazing on my alternative treatments until my latest scope showed that my inflammation is just as bad as it was 6 months ago and all those supplements and treatments haven't done ****.

Now I feel horrible: canker sores (too many to count), fever/chills, urgency/frequency, nausea, aches and pains. I don't know if it's being caused by the Humira, the pred withdrawal, backing off of the supplements or all three combined.

Did I mention the canker sores?!?!! I can hardly talk or eat without massive pain in my mouth. Really awesome considering I talk on the phone for a living.

I am sure that my dear, sweet, patient, understanding husband is just about at his breaking point with this stupid disease. So am I.

I am praying it's the pred withdrawal causing the symptoms - I really want the Humira to work.

At least the Phillies seems to be out of their slump so that makes me smile. :)

- Amy
 
Amy - I'm very sorry you're having such a bad time, it sounds very unpleasant indeed :frown: I see in the PDR that Humira can bring on shingles (herpes zoster), so while they don't mention it specifically, it would seem canker sores would also be a conceivable adverse reaction. Low levels of iron, folic acid & B12 can also bring them on.

I'm glad you have a support system, that's so invaluable!

I hope you begin to feel better very soon, and cheers to your Phillies! :thumleft::thumleft:
 
Amy - That doesn't sound good at all. I had major prednisone withdrawal too, but after about a month I started to feel better. I don't know if you have it in the States, but I rinsed with something called Amosan and that really helped with the canker sores. I hope you start to feel better soon!
 
MapleLeafGirl said:
Amy - That doesn't sound good at all. I had major prednisone withdrawal too, but after about a month I started to feel better. I don't know if you have it in the States, but I rinsed with something called Amosan and that really helped with the canker sores. I hope you start to feel better soon!
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RE: Amosan, According to Wikipedia "A recent double-blind crossover study [1] has suggested that hydrogen peroxide, which is released during the use of this product, may prevent or retard the colonization and multiplication of anaerobic bacteria, such as those which are known to inhabit oral wounds." Don't know if Amosan itself is available in the US, but hydrogen peroxide, basically an antiseptic, can be had at any grocery store or pharmacy, and quite cheaply, too. Might be worth a shot!
 
Yup, hydrogen peroxide, baking soda, and salt water rinses are all remedies I've heard are good for canker sores. My husband just got over a really bad one. He used some Orajel at night and also used a mouth wash with tea tree oil, spearmint, and fluoride (Tom's of Maine). Not sure which did the trick, but it healed up within a few days.

I'd be miserable if I were you too, Amy. Sounds like a lot is going on! Really hope it's the Pred and you'll be done soon so you can start feeling better. Hang in there lady :)
 
Amy, I'm so sorry to hear it's such a tough week for you. *hugs*
 
Hi Amy, I was on Humira too and it worked for a short period, not 100% mind you but better. Contrary to David saying having cankers can be from low B12 and folic acid... I am on monthy doses now and folic acid and I have had more canker sores in the last month than ever. I have never had two at a time, and now seems like I am getting them all the time. I was on Entocort but recently came of them and Pred way over a month ago. Humira and (methotrexate I am on) suppresses your immune system and canker sores are common with these drugs. I drink lots of water but I still get them. I have had Canker sores all my life and the rest of my family get them too. I think they are hereditary and Crohns related. And yes they hurt. I dont put anything on them they go away sooner or later and if really painful I use oragel, numbs it for a short time. The only one who is happy when I get them is the hubby LOL ...kidding stops me from jabbering alot :hallo3:. LOL Hang in there. Maybe the Humira isnt for you either, hope you get some relief soon!
 
Thanks, everyone for the kind words!

The cankers make my cranky! I got cankers for months before my official Crohn's DX. I think they are a harbinger/indicator of a flare, and since my other symptoms "down under" are bad right now, it makes sense that the cankers are bad right now too. I do rinse with hydrogen peroxide every day! My hubber got me some orajel and that really helps - at least it numbs them and allows me to eat.

Today was my first day without nausea, so that's a plus. But the urgency/frequency is really bad.... It was a "throw away the underwear, pajamas AND the bathroom throw rug" kind of morning.... Ugh.

I'm going to stay at the 10 mg of pred until things level out. Thanks again for being there for me.

xo - Amy
 
Oh geeze Amy - I can relate with canker sores.....after I had strep the end of March, I broke out with cold sores ALL OVER my lips, nose, gums....it was GROSS!.....painful as all get out too.....I usually get 1-2 at a time, but this was over the top....I've had it before - this it was diagnosed as stomatitis at the time......I seem to break out when I am not feeling well - either with a flare or general illness.

I use Zovirax for the sores - that seems to help them clear up faster - sometimes stings a little, and tastes pretty disgusting - but the quicker healing is worth it! If I use it at the first tingle, I can head off the worst of the symptoms too....

Hope you are feeling beter soon!
 
They should call them "Cranker" sores! Will look into those treatments - thank you!

Today was just a tad bit better. Only mildly soiled myself once! Woo hoo!
 
Amy, I'm sorry for your dilemma. EJ has been having little puss filled sores on the tip of his tongue. I don't even know what canker sores are but does this sound familiar? Sorry to ask a question. I do hope you're on the mend.
 
I just saw this thread. I'm sorry you are having such a hard time. And it's so difficult when you can't determine exactly what's causing it. Is it the Crohn's? Is it the meds? Sometimes it's so hard to figure out. But anyway, I'm glad today was not as bad and I'll pray that tomorrow is even better for you.
 
Sorry about your "Cranker" sores... I can relate to how painful they are :(
I hope you feel better soon and are able to eat and talk on the phone as per usual.

HAHA..David, you're like a walking encyclopedia... want to write my next paper? :p
 
Amy I hope things have continued to improve since you last posted in this thread. I hate that you're going through this tough time.

BTW many moons ago I worked for a guy who used to drive to Pottstown to buy kielbasa (sic?) from a deli on the main drag. He bought pounds of it for the annual summer office BBQ and he picked up yeunling (sic?) beer also, back before you could buy it everywhere. What a treat that was.

Feel better soon!
 
Hi Stinky - Thanks for the well-wishes. Today was my best day in the past two weeks. I think things are getting to a steady level with the pred, but I will stay at the 10 mg another week just to make sure.

Pottstown is often confused with Pottsville, which is the home of Yeungling beer. But, yes, now you can get Yeungling almost everywhere and even 5 years ago it was just a PA thing! Do you live in PA too?
 
ameslouise said:
Pottstown is often confused with Pottsville, which is the home of Yeungling beer. But, yes, now you can get Yeungling almost everywhere and even 5 years ago it was just a PA thing! Do you live in PA too?
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Amy - When my ex and I used to live in Columbus, Ohio, we would frequently drive to Pittsburgh for a few days of "something different". Pittsburgh is a much more diverse & interesting city than is "Klummus", IMHO, On one trip we saw Cirque de Soleil, another time we visited Frank Lloyd Wright's "Falling Water", etc., and I definitely recall having Yeungling beer in some restaurants in the area. I especially liked their Porter.

Glad to hear you're feeling a bit better!
 
ameslouise said:
Hi Stinky - Thanks for the well-wishes. Today was my best day in the past two weeks. I think things are getting to a steady level with the pred, but I will stay at the 10 mg another week just to make sure.

Pottstown is often confused with Pottsville, which is the home of Yeungling beer. But, yes, now you can get Yeungling almost everywhere and even 5 years ago it was just a PA thing! Do you live in PA too?
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I really think it was Pottstown, it was not the home of Yeungling, but you could buy it there and so it was always part of the party. I'm in the DC area and back then, maybe 20 years ago, you could not buy Yeungling here. The guy who made the beer and sauage run took me there once on the way back from Pocono raceway, so it's not too far off the path from there. That was the best Kielbasa I ever had.

Glad you are feeling better!
 
An update from me.

Things suck right now. I am really starting to feel bad for myself and self pity is not something I do well.

I have been on Humira for 3 months now, and am currently at 6 mg pred (been on it for a YEAR now!). I feel like **** every day. I am going to the bathroom about 15-18 times a day, urgency, frequency, accidents - you know the drill.

I really thought between the Humira and taking the summer off (no stress and lots of naps and relaxing), I would miraculously start to feel better, but it seems to be going downhill every day.

I cut out all the supplements, powders, etc I was taking as they didn't help at all with the inflammation (as shown by my last scope) and were costing me a fortune. I am still taking the vitamins that I need. Now I wonder if I should give the supplements and powders another try to see if they can improve my quality of life (these are "natural" powders mixed with water - taken for gut health, healing of the mucosal lining, anti-inflammatories, etc). Even if they don't help with the inflammation, maybe they will make me feel better again and cut down on the bathroom trips so I can get some darn sleep! I guess I won't know until I try. Thankfully my husband is very supportive and understanding. I couldn't do this without him. He even offered to chart my food intake and poop output so we can find a correlation and maybe adjust my eating habits so I can sleep better!

I have some other health stuff going on the gyn department (I'll spare you the TMI) that is not serious or major, but just one more thing I have to deal with. Ugh.

CAN I GET A F*&#*$@ BREAK OVER HERE?????
 
Aw Amy
nooooooooooooooooooooooooo, how can this be?
I don't know the answer, when do you see the doc again?
All I can do is send you a big squashy hug down the cyber space
Remember you said please God give Joan a break?
Well I've just kicked his sorry arse, and asked to give you one too!
get well soon, we miss you!
lotsa luv
Joan xxxx
 
Amy - So sorry to hear this. It certainly can't hurt to try the supplements again and see if they can bring you some much needed relief. I have no advice, just wanted to say I feel for you and hope things start to improve for you very, very soon!
 
Hey Amy! I'm sorry to hear things aren't going to well :p

I would agree with Kelly about starting the supplements again. Like you said, it couldn't hurt to try them out again. I really hope they help.

What did the docs say would be the next step if the Humira failed?
 
Amy, Sorry to hear you're struggling so much. You might ask the doctor if you can take some antihistamines, claritan or zantac. It sounds crazy but I treated my D with claritan for a long time before I had my diagnosis.

I hope you feel better soon!
 
crohnicaly stinky said:
Amy, Sorry to hear you're struggling so much. You might ask the doctor if you can take some antihistamines, claritan or zantac. It sounds crazy but I treated my D with claritan for a long time before I had my diagnosis.

I hope you feel better soon!
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It's not crazy at all.... a nurse friend of mine told me that sometimes benedryl is used for nausea so I can see where an antihistamine might be used for D.

I have been taking Tylenol PM on occasion when things are really bad, and that is essentially just Tylenol with Benedryl in it. It does help a bit... so, I will try the Claritin, now that my allergies are acting up anyway. Thanks for the recommendation and thanks everyone else for the well-wishes.

I talked it over with Levi this morning and I decided to give the supplements, etc. another go-round and see if it helps.

I'll keep you posted! - Amy
 
I found the claritan trick a few years ago googling my symptoms, which at the time was bouts of D during pollen season. I found out you have histamine receptors in your bowels and so I just tried it on a whim. Takes a few days to kick in but it would clear up the D. This year it didn't work as I was in my first major flare, but my first doctor visit was to an allergist and he told me claritan is very mild and I can take two at a time if I wanted to. I still think they helped me as I took them along with the pred.

Now just stop being the poster child for "bad things do happen to good people" OK!?
 
Amy, I hope you feel better soon. You've been so active on cf lately that I just assumed you were on the mend. Sorry to hear otherwise. You really don't do self-pity very well do you? All the best!!
 
The latest....

The source of my most recent discomfort/pain is not Crohn's related, but is in fact a gyn problem. I had thought maybe I had a gyn problem AND an abcess, but it turns out it is a gyn abcess called a Bartholins Cyst. (Don't Google it; it's gross.)

I got multiple good news on this one: Not Crohn's related, not serious but fairly urgent because it has grown to the size of a quarter within four days, the gyn can to the procedure TOMORROW, the diagnosis, set-up, scheduling, preadmission testing, etc, all taken care of within one hour of walking into the exam room. How often does THAT happen?!

Even though I have a bona fide medical situation here, I feel like I really lucked out. And by this time tomorrow, I will be feeling so much better!

GI still wants to do an MRI just to make sure there was no impact on or complication to my GI tract. Off all the tests I have had, never had an MRI before! Wish me luck!

-Amy
 
Oh what a relief Amy and to be able to have it dealt with so swiftly, YAY!

Wishing you all the luck in the world with the procedure and the MRI .........


:goodluck::goodluck::goodluck::goodluck:


Roo had and MRI last week and said it was just fine. She said the vibrating of the table felt like she was having a massage done! :lol:


All the very best, :)
Dusty
 
Amy, Sounds like good news to me! at least in terms of the idea that you'll be able to put it behind you. BTW "(Don't Google it; it's gross.)" You think your going to gross out a bunch of chronies? HAH! LOL!!! That's really funny!!! HEHEHEHE... :ylol2: I had a yuengling (sp) the other day and thought of you and hoped you were feeling better. So I'm taking some credit!
 
Wow! Sorry you're experiencing this new medical problem, but so glad it sounds like it's getting swiftly taken care of! I'll definitely be thinking about you tomorrow and during your MRI Friday! Here's to a speedy recovery and feeling better!
 
Amy, EJ had an MRI and said it was fun!! Hope all goes well tomorrow!! Let us know as soon as you feel well enough.
 
crohnicaly stinky said:
You think your going to gross out a bunch of chronies? HAH! LOL!!!
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I had the procedure today to drain the Bartholin cyst and the doc said it was as big as a LIME! C'mon - that HAS to gross you out, right? I almost fainted when she told me that!

All went well and I feel a hundred times better. I've had four GI related surgeries and a lot of pain over the years, but NOTHING compared to the pain I felt over the past five days. Ladies, I hope none of you ever have to go thru this!

Thanks for all the well wishes. On to the MRI tomorrow, and I hope it's as "fun" as EJ's was!

- Amy
 
Well I did google it and while there is no way I can know how much it must have hurt, obviously it had to hurt a LOT. Good luck on your MRI! btw after I read about it, I did not look at the pictures, so not grossed out but not taking any chances either. :lol:
 
wow Amy they must hurt!
a friend in work had one of those, then had an op, she said it was the worst pain she's ever had!
really hope you're ok now hun?
take care
xxxxx
 
I totally missed this thread, sorry Amy. Very glad to hear that you are feeling a bit better, hope it lasts a long long time.:wink:
 
Hi Ames Louise:

I just read this thread and I wanted to say that I hope you are getting better. I have heard of a clinical trial in the UK where the patients were put on a meal replacement diet for 2-4 weeks and well cooked foods slowly introduced (doing an elinimation diet essentially to check for food sensitivities). It give the GI tract a chance to rest and heal. I have not tried it. But according to the study, it seemed to work with alot of patients. I am sure if you google eliminiation diet and crohns you may find the article.

Of course, this would be tough to follow--I can barely cut out one food item like wheat, never mind all solid foods. But it may help you. You would need a script from your doc for the liquid food. And of course, don't do it without consulting your doctor. Just trying to figure out ways for you to get better since it seems like you have exhauseted other avenues.

Good luck and I hope you get better soon!
Chris
 
Great to hear that you're improving, and best wishes for the soreness to go away really soon.
 
Chris, I would totally be open to an elemental or replacement diet. It would be tough, but not any tougher than feeling like **** all the time! The social aspect of eating would be really hard to do without, but I would just have to replace that with something productive.

Elemental diet has similar remission rates to prednisone, and right now, prednisone hasn't done much for me, even afer a year of use :(
 
Ameslouise, I just caught this thread been off for a few days. I am so sorry that this is all coming down on you and hope that things get much better very soon.
 
ameslouise said:
Chris, I would totally be open to an elemental or replacement diet. It would be tough, but not any tougher than feeling like **** all the time! The social aspect of eating would be really hard to do without, but I would just have to replace that with something productive.

Elemental diet has similar remission rates to prednisone, and right now, prednisone hasn't done much for me, even afer a year of use :(
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I hear you. I miss having a glass of wine when going out to dinner. But we have to do what we have to do. Getting better and healthy so we can enjoy life with our loved ones is first priority.

If you do go the elemental route, keep us posted. Someone posted a link to a article about a study in the UK about patients being put on elemental diets for 2-3 weeks and then on an elimination diet for a few months. Many of them have been symptom free for years.

In theory, I would love to try this. In practice it is just so hard to give up favorite foods and, as you said, that social aspect of eating with friends and family.

I wish you the best and will pray for your speedy recovery.

Christine
 
Dexky said:
Amy, just wondering how you are getting along now??
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Thanks for thinking of me! Things suck right now to be honest. I had a first-ever the other night when I slept on the bathroom floor because it was just easier than running back and forth every ten minutes. Funny enough, once I went to sleep in the bathroom, I only got up 1x in 3 hours! Weird.

I have a call in to the doc right now. I have some new pains/pressure/tenderness that I am concerned about, and the urgency, frequency and accidents/leaking are just getting worse.

I feel so defeated - I am doing everything right, but my body still betrays me.

I look forward to the day when I can answer your question with "Much better, thanks!"
 
PS By some miracle of God I was able to take my son and his friends to the amusement park yesterday and was fine all day. I popped tylenol every four hours, but I was fine and even made it on to the big roller coasters!
 
Yay, Amy! Sorry to hear things have been getting worse. I hope you can get in to see your doc soon! What about weekly doses of the Humira?
 
My sisters husband had cancer really bad and when he was going through his treatments he got the sores in his mouth really bad. He took this stuff it is called GELCLAIR. It adheres to the lining of your mouth. She gave me her boxes of left overs and it works wonders helps with the pain tremendously and can be bought at most US pharmacies otc. Hope it helps!
 
Gelclair - I will look for it, thanks Dusty!

Just talked to the doc.... seems my MRI shows I have a small collection of fluid by my rectum. It's not really an abcess and not really a fistula, but it could be the source of some of my issues, especially the leakage and loss of rectal function.

We talked about three options...1. Increase my pred dose back up to 20 mg. (ACK!) 2. Admit me and put me on heavy dose of IV antibiotics. (ACK!) 3. Oral antibiotics Flagyl and Bactrim for two weeks and if that shows improvement, increase Humira to 1x wk.

Yes, please, let's try #3. So we agreed on that course of action.

Doc talked very frankly with me about the reality of my pouch possibly being at the end of it's useful life and it might not be possible to regain rectal function. At this point, I don't f*%$^ing care. I would welcome a bag and the escape from this nightmare that it would offer.

Will keep y'all posted. Thanks for much for your support! xo -Amy
 
Amy you have endured a lot and it's about times crohn's gives you a freakin' break already. I'm really hoping you get some peace and soon.
 
ameslouise said:
I feel so defeated - I am doing everything right, but my body still betrays me.
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Wow, Amy!! Such a profound statement!! I'm sorry for the circumstances that could cause such thoughts. I look forward to a time when your thoughts match your beautiful smile! I hope the new course of action gets you a well-deserved remission!!
 
Hey Amy,

I too hope more than anything number 3 works for you! Sending all the (((HEALING THOUGHTS))) and (((HUGS))) I can muster your way..........................................

:ghug::ghug::ghug::ghug::ghug::ghug::ghug::ghug:


:getwell: and look after yourself mate. :hug:


Dusty. :)
 
Hey Amy

thinking about you gorgeous girl!
really hope number 3 is the magic number for you!
sending a huge hug your way, hope you get it!
love as always
Joan xxxxx
 
Thanks, everyone. I can't tell you how much it means to pop on here and see everyone's positive notes and words of support.

I am feeling TONS better on the antibiotics. I am on Flagyl and Bactrim. The flagyl is making me nauseous and giving me a hideous taste in my mouth. But other than that, so far so good!

xo - Amy
 
Yuck, I hated taking flagyl. I couldn't even drink water without it tasting terrible!

So, glad it seems to be helping you though! Yay!
 
Hiya Amy

glad you're feeling a bit better!
Flagyl is Metronidazole over here isn't it? I had that in hospital, you get a metallic taste in your mouth? YUK I also ended up with oral thrush with it, so watch out for that too.
I just chewed loads of chewing gum!
xxxxx
 
No worries, Sue! I feel GREAT now that I am on the antibiotics. Also upped the Humira to 1x week. I seriously feel better than on 40 mg pred, without the side effects!!!!

- Amy
 
Thanks, Mark! You're always so sweet. And so is everyone. Dang, the whole world looks great now that I am not sharting myself every five minutes!!! :)
 
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Haven't been around much - busy with new job, MIL's hip surgery, Jewish Holidays, etc.

Just wanted to say Hi to everyone, I am doing GREAT on the antibiotics (well-being mesaured by a complex formula calculating foods I can tolerate, trips to the bathroom, and pairs of underwear discarded).

Off the pred in FOUR DAYS. I can't wait!!!

Hope everyone is doing well. Happy New Year to all the Jewish Crohnies out there!

xo - Amy
 
Yippee!!! So good to hear you are doing well!!! Keeping my fingers and toes crossed that it stays that way for a very long time.

All the very best, :)
Dusty
 
Shalom, Chag Sameach!!!! No, I'm not:). Happy holidays Amy and I'm very glad to share in your good news!!!
 
ameslouise said:
Haven't been around much - busy with new job, MIL's hip surgery, Jewish Holidays, etc.

Just wanted to say Hi to everyone, I am doing GREAT on the antibiotics (well-being mesaured by a complex formula calculating foods I can tolerate, trips to the bathroom, and pairs of underwear discarded).

Off the pred in FOUR DAYS. I can't wait!!!

Hope everyone is doing well. Happy New Year to all the Jewish Crohnies out there!

xo - Amy
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Hey Amy, I know how you feel about the Flagyl, I practically lived on it and the pred but when I was on Humira I only was on that and the odd flagyl to keep it at bay til the Humira didnt work anymore.

I had my appt on Rosh Hoshanah and my Doctor was Jewish and I completely forgot and he rushed out the door! Heck, I even sent him a bag of apples from our apple trees cause he loves his fruit and forgot that too. I have an appt Thursday for my b12 shot so I should remember....pred def a memory killer!!

I hope you continue to do well, you are a great lady and you deserve a break! :ysmile:
 
Hi all - Saw the doc today. Reported to him that I was great for 3 weeks on the antibiotics, then all fell to **** again about a week ago. UGH!!! We are going to do a scope next week to see what it looks like in there, to see if the Humira is really doing anything (I don't feel like it is).

After the scope - we will make a decision: Another round of Pred coupled with Methotrexate, or surgery and a permanent ostomy.

I'd rather have surgery than spend another year dicking around with the Prednisone and a med that may or may not work. But I am not ready to make that decision yet...

All I know is that I am TIRED of it all.

On the lighter side, I did chuckle when my young doc said to me, "Dude, I'm sorry I haven't fixed you yet." He's so cute.
 
Sorry it went downhill for you Amy!! All I can say is good luck!!

I can't believe he called you Dude!!! You should start calling him Doogy Howser!!!
 
Sorry to hear the once a week isn't working for you. I am glad your doing better. My Humira doesn't work as well as it use to. Not sure what my doc will say in Nov. I hope your test goes well. Good Luck.
Lucy
 
I hope you get better soon Amy. I'll keep you in my prayers. Your doctor sounds funny.

I have to say an ostomy truly isn't bad. I thought I'd hate it but honestly if I needed this for the rest of my life I'd be okay with it.
 
Hi Amy: I can't understand the feelings you must be experiencing, going through attempt after attempt to get your symptoms under control; sending best wishes for clarity as you work to decide on your next path. Thinking about you.
 
Hey Amy,

I wish you all the luck in the world with your upcoming tests and the decisions you will need to make. Thinking about you.....................

:goodluck::goodluck::goodluck:

Take care mate, :hug::hug::hug:
Dusty
 
So sorry to hear things aren't doing well! I don't blame you for feeling fed up with more medications and just wanting to get surgery over with. And yet not feeling ready to make that decision. I think I would feel the same way as you if I were in your shoes.

Keep us updated on when the scope is. (((HUGS)))
 
Amy - Sorry to hear this is still on-going for you, I was hoping you would get some relief. Good luck with your decision.
 
ameslouise said:
Hi all - Saw the doc today. Reported to him that I was great for 3 weeks on the antibiotics, then all fell to **** again about a week ago. UGH!!! We are going to do a scope next week to see what it looks like in there, to see if the Humira is really doing anything (I don't feel like it is).

After the scope - we will make a decision: Another round of Pred coupled with Methotrexate, or surgery and a permanent ostomy.

I'd rather have surgery than spend another year dicking around with the Prednisone and a med that may or may not work. But I am not ready to make that decision yet...

All I know is that I am TIRED of it all.

On the lighter side, I did chuckle when my young doc said to me, "Dude, I'm sorry I haven't fixed you yet." He's so cute.
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Sorry you are having to make this decision, and hope what ever you choose you are healthier and feeling better, I know you are tired of it, sure weighs you down... but have to get back up and fight this ok? We are in your corner. Let us know how you are doing ok? ((hugs))
 
Hiya Amy!

Thinking of you thro this difficult decision making time!
So sorry it's all gone tits up!
love as always
Joan xxx
 
Joan - you always make me laugh! I think I am going to have to add "tit's up" to my regular repetoire of sayings!

Things fairly suck right now. I am just hoping I make it thru the scope okay and the weekend.... I am standing up for my best friend at her wedding on Sunday and I am praying I can make the trip to MA for the weekend.

Thank you all for your kind words and support. It means so much to me.

xo - Amy

PS Sorry I haven't been around much lately - laptop went tit's up and we need to get a new one!
 
Amy, you have been hurting a long time now and I can't even begin to imagine how tired you must be of it. I wish you all the best and I hope things get better for you soon.
 
Hi Amy, I can't say I blame you for not wanting to be on Pred, I have been on and off it for years and I am hoping some of my sides are going to go away from it. I know you don't want surgery either, very tough decisions all around. I just know that if I do Pred one more time I worry that it could cause worse problems down the road too. You have been ill for quite some time and I hope you get some relief very soon, we all miss you on here, and keep us updated ok? (((hugs)))
 
Yay (improvement already) and boo (the rest). May you get off the nasty drug right quick!
 
ameslouise said:
In better news, I did get to DC the antibiotics since they weren't doing **** anyway. I may get to have a couple sips of Champagne at my BFF's wedding on Sunday!

Have a great weekend everyone! xo -Amy
Click to expand...

Hope you had fun Amy!!
 
Ohhh Ames...I am going to pray for you...What on earth!! You have been struggling for sooo long my friend! Wish I lived close to you...I'd come with you to your appointments--How is your pouch? Is it holding up?! They just have to come up with something better! Sue
 
Had my small bowel follow thru last week, talked to the Doc today.

He said the inflammation is starting to go up from my pouch further into the small intestines. Not too bad, but he's concerned about it creeping up and up further and further. We had chatted a little bit about surgery, but he wants me to stick with the "medicinal route" to try to knock it all out and keep it from continuing to creep.

I will see him next week and we'll decide which med to go with next. Humira doesn't seem to be doing squat.

He asked me to up the pred from 20 to 30 and I was like NO WAY!!! I feel really good, pleeeeeeease don't make me increase. He reluctantly agreed for the time being...

So, I feel really good right now (still can't get the nightime accidents under control though). Have been super careful about my lo-res diet. It's hard not eating fruits and veggies!!

Hope everyone else is doing okay today too!

xo - Amy
 
Hiya Amy!

Was thinking about you the other day, wondering how you were getting on with TEB (the evil *******!)
Hope you can manage without upping the dosage of TEB!
Fingers crossed for you hun!
And hey, I've got to 10mg, can't believe it!
And when it's all gone, it's gone, never again, not unless I'm at death's door!
Stay well
xxxx
 
Amy,
I read your post about throwing out the night-gown, sheets and the bathroom rug and it helped me out. That was my morning. And my night last night. The Humiera helped me for the first two doses. You know, the 4 shots then the 2 shots. But when I had to reduce to one shot, it just was like shooting myself with fire water. Did no good. I hope you are doing better. Sorry about the Phil's. I am originally from South Jersey. Miss the food!
Michele
 
just touching base...

Hi Amy,
Thinking of you, and wishing you well.
I admire the way you have kept your good humour despite the challenges.

How about a progress report when you get a chance?
Hope the meds provide some relief.
hang in there,
Walt

ps What amusement park did you go to?
I'd like to get my Crohn's roller coaster to give me a break,
so that I could travel to ride a real roller coaster!
(for me, it'd be Cedar Point in Ohio)
sigh
 
Hi everyone! Thanks for the well wishes. Joan - just read that you are off the Pred again and I'm so happy for you!!!

Walt - Dorney Park in PA. My stomach is doing leaps just remembering that last ride in August!

I saw my doc on Tuesday. We decided that the Humira isn't really doing the job, though we are not going to DC it just yet. We are going to add Methotrexate once a week. He says give it four months. After that, if things still aren't better, then we'll talk about surgery.

All I can do is keep hoping to hit on the right med or mix of meds that will work for me. And if I end up with surgery, I'm totally fine with that.

Right now at 17.5 mg pred and tapering by 2.5 every 2 weeks. So far so good. Have changed my diet -again. I cut out raw/undercooked fruits and veg and am sticking mostly to purees, soups and smoothies for my fruit and veg intake. Seems to be working pretty well so far.

Thanks everyone for thinking of me!!! xo - Amy
 

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