Newbie!

[sickofitall]

Hi Yall! I just found this forum after googling Remicade & Cimzia. Glad to find the support. So I thought I would introduce myself.... I'm 29yr old female in NOLA. I've relatively had a healthy life. Looking back on it I think I had 2 or 3 major flares in my late teens early twenties, but it was never diagnosed and usually went away in about one year, without medication. In Nov. 2008, I got married in Jamaica. All was well till I got home. 3 days later I developed severe D. After 2 GI drs, 4 colonoscopies I finally got my diagnosis in April of 2009. (I wasn't waiting around this time!) I was put on Pred and developed severe myalgia of the legs and couldn't walk for one month. Pred. obviously didn't work, so we moved on to Remicade. This worked very well for my crohns, but I still have SEVERE leg pain. Most nights I can't walk up the stairs to bed. I just had several drs appts and now I have: high BP, high heartrate, chest pain, leg muscle weakness, enlarged thyroid... I can't help but feel like if I would have done what I always did and left it alone, this would have went away. Anyway, I'm awaiting more tests, EKG, stress test, EMG, and MRI on the heart. This just seems crazy to me. When I got married I was in the best health, I did yoga every day, tons of energy, and happy. Now I'm just sickofitall. Thanx for the outlet!

 

[GoJohnnyGo]

Welcome Stephanie.

Sorry about the Crohn's thing. Happens to the best of us.

Having an autoimmune disease, it's no surprise you're having other issues.

Have you been tested for Rheumatoid Arthritis?

 

[sickofitall]

Hi GoJohnnyGo!

Yes, I've been to a Rheumatologist who has tested all of those types of diseases. They tested everything! they said the bloodwork looked great! The only thing they forgot was the thyroid which will be checked soon. I think I'm just having really bad side effects to remicade even though its working really well. The leg pain has to be the worst: joint pain, shooting, tingling, stiffness, weakness, etc. Sumthin aint right, ya know? Too many symptoms to be nothing. We'll see I'll keep tryin with the drs.

 

[Dexky]

You must be one tuff gal Steph. I can't imagine any of EJ's flares lasting for a year and not doing anything about it. I'm glad you are here. Someone will have some advice that is helpful. Good luck.

 

[Crohn's 35]

Welcome to the forum! I see you have had some help here. Most of us do get sick of it all at times. It isnt only just one thing, many times other things come up, I have a Hiatus hernia, get kidney stones, joint pain, feet pain and just feel tired. Hope you enjoy the forum, lots of people here to help and for a chuckle or two, God knows we dont get to laugh often!

 

[Regular Joe]

Yes welcome Stephanie!

That's the nature of autoimmune disease. It ALWAYS involves more than one area...usually multiple locations. Crohn's disease has a "feature" called "Extra-intestinal Manifestations (EIM's). That means you get a "package deal." Random inflammation wherever the disease decide it want travel. Almost always joints are effected, skin, kidneys and on it goes. The damn disease is nasty and has a "mind" all it's own.

Good to see that you have some spunk to fight this thing back. Not really fight the "thing", but it's more a fight to have a fulfilling life over and above survival.

Welcome
Joseph

 

[sickofitall]

Thanx for the replies. I just know what kind of life I had before, so I really want to get it back. Glad to have support too. I don't know anybody with IBD. So its difficult to discuss with family/friends because they don't really understand how things are always changing and new problems keep coming up. So I'm happy I can share some of this with you guys. You all seem pretty knowlegdable, if not with medications than with experience just dealing with "it". We are thinking of moving on to Cimzia or Humira. But since its in the same class of drugs I'm concerned I'll have the same problems. Anybody have any advice on either?

 

[Nyx]

Hi Stephanie...I don't have any advice as I haven't been on any of those drugs (I got a colostomy instead....lol), but wanted to ask you where in Jamaica you got married? I've been there twice and loved it My bf and I have vacationed in Runaway Bay.

Good luck, I hope you get it sorted out soon and the new meds work for you

 

[sickofitall]

Nyx- whats funny is my husband's name is Oscar! Anyway, we got married in Negril, Jamaica @ Coco LaPalm. It was beautiful! We are actually going to Runaway Bay for our 2nd anniversary. Any suggestions while were there? Oh and I wanted to ask u about the bag? was it ur decision? My drs won't discuss surgery and insist on these hard drugs, don't mean to pry but I was curious....

 

[Nyx]

We were at Hedonism III (I know...dirty girl!!!) but it was fantastic!! We also have a friend who lives in MoBay so he took us around and did some touristy stuff while we were there. If you get a chance, go and see the Glistening Waters (it's about 10 mins outside of Runaway Bay)...fantastic! Like nothing you've ever seen.

About my bag. I was staying with my brother just before Christmas last year. I hadn't had a bm for about 7 days and was up in the middle of the night thinking I had to go. Well, I tried so hard to go that I wound up rupturing my sigmoid colon and distending my bowel. I had my brother take me to the hospital (omg...worst pain I've ever had in my life). I woke up the next day with a bag. As it turns out, it was the best thing that's happened to me in a very long time. Most of my disease is in my lower system/rectum, so I still have to have all that removed (my bag will be permanent). But, I'm feeling like I did pre-Crohn's. Prior to my surgery I was on Imuran, and prior to that Pentasa. If I didn't have the blockage I think the Imuran may have worked....lol. It's always best to try all the drugs before resorting to surgery. But, if it comes down to it, surgery isn't that bad. It's a huge lifestyle change, but for me, the ups way outweigh the downs.

Have fun in Jamaica! We're pondering going to St. Lucia this winter for a change of scene...

 

[Entchen]

Hi, Stephanie. Glad to have you on the forum. It feels crazy to me, too, to think about going from active, busy, fun life to ---sick--- in such a short period of time. And you've been through the ringer already. What a challenging way to start off a marriage, too.

Also: you live in an amazing city, so rich in music and stories. I spent a week in NOLA last February. Was there for a conference, but I (ahem) missed some sessions to visit as many neighbourhoods as possible, go to the art museum and gardens, catch some parades (naturally), and eat myself sick (this was pre-Crohn's). I enjoyed learning about some Cajun customs and folklore that are similar to the Acadian culture that I am partly from (ex: the Rougarou / loup garou, and fais do-do). And, in what's probably the best foodie city in the US with amazing restaurants and huge names, it's the mashed potatoes - baby potatoes drenched in butter - that I kept coming across that I remember the most. I've been trying to replicate them but haven't come even close to matching the taste. Can't wait to go back again.

 

[Astra]

Hi Stephanie
and welcome

I feel your pain hun!
Joe's right, there are so many manifestations of this disease and what you're experiencing is just one of them, I'm afraid. I've got joint pain too and fatigue, and in time, all I can say is, it will become manageable!
We've just gotta take each day as it comes, face it head on, each day will be different from the last, it's such an unpredictable bitch!
glad you found us, we're here for you now, you're no longer alone with this
enjoy the forum!
Lotsa luv
Joan xxx

 

[sickofitall]

Nyx: We got married @ Coco but we honeymooned @ Hedo II. It was interesting to say the least! Good to find a fellow hedo on here. That sux bout the bag. But it sounds like u got ur life back so thats good.

Kelly: I was born and raised here and the food is awesome! Sometimes it makes me agry tho. Like I can't eat what everybody else is eating and I get jealous, grrrr. Like for dinner my hubby had pecan crusted catfish with jambalaya, are u kidding me? I find myself cooking alot more now. I've implemented alot of Cajun dishes. But can you believe this BP crap? The poor gulf

Astra101: Thanx for the support. Was wondering what u take for joint pain? Since nothing comes up in the bloodwork they don't want to prescribe anything else. And I don't mean just pain meds, but do you take anything specific for joints? My stomach started flaring again today, I'm due up for my infusion in a few days so I'm like gimme remicade! Maybe they can give me something to make the joint pains manageble, since the remi is working?

 

[Astra]

hiya Stephanie

make sure you don't take any NSAIDS like Ibuprofen, big no no for a Crohnie!
I take codeine phosphate at bedtime, it's a fab painkiller but also stops D in it's tracks. I don't take it during the day, it makes you drowsy, so I take paracetamol instead, this isn't anti inflam but ok for pain, and cos I shouldn't take Ibuprofen, I've been prescribed Ibugel, this contains Ibuprofen, but doesn't enter my guts, and I rub it on my joints, it's hot and works a treat, by reducing any inflammation and swelling, I've not had any stomach problems using it. Ask your doc about it.
take care xxx

 

[sickofitall]

Asta: I will ask about those meds. What's confusing is we can't tell if the joint pains are just me or a side effect from remicade. Bc they didn't start hurting until after i was on prednisone and then remicade. I mean I never, ever had a leg pain in my life before all this crap. So I'm reluctant to switch to something else bc it could just be me. I wish I could tell without switching. But we're thinking since nothing is coming up in the bloodwork it could be the Remi. Decisions decisions....

 

[Entchen]

No, I CAN'T believe the BP crap. I want to know why it seems like *everything* in the clean-up effort is on hold until they cap the leak itself. There's so much else that needs to be done, too, and surely there are enough people in that massive company to multitask. About 1300 dead animals have been found and only a handful cleaned and released -- although part of the problem is that, with so much damaged, there aren't many places to release the animals to (http://dailydeadbirds.com/). Sheesh.

 

[Heather]

Hi Yall! I just found this forum after googling Remicade & Cimzia. Glad to find the support. So I thought I would introduce myself.... I'm 29yr old female in NOLA. I've relatively had a healthy life. Looking back on it I think I had 2 or 3 major flares in my late teens early twenties, but it was never diagnosed and usually went away in about one year, without medication. In Nov. 2008, I got married in Jamaica. All was well till I got home. 3 days later I developed severe D. After 2 GI drs, 4 colonoscopies I finally got my diagnosis in April of 2009. (I wasn't waiting around this time!) I was put on Pred and developed severe myalgia of the legs and couldn't walk for one month. Pred. obviously didn't work, so we moved on to Remicade. This worked very well for my crohns, but I still have SEVERE leg pain. Most nights I can't walk up the stairs to bed. I just had several drs appts and now I have: high BP, high heartrate, chest pain, leg muscle weakness, enlarged thyroid... I can't help but feel like if I would have done what I always did and left it alone, this would have went away. Anyway, I'm awaiting more tests, EKG, stress test, EMG, and MRI on the heart. This just seems crazy to me. When I got married I was in the best health, I did yoga every day, tons of energy, and happy. Now I'm just sickofitall. Thanx for the outlet!

Have you tried marshmallows and Jelly babies don't ask me why but they really help my friend gets marshmallow tablets from USA for around £60.00 a month and to date she has not had a flare up at all - I suffer from UC and I take the Marshmallows when it is flaring up and fortunately for me have managed to substained having to resort back to steroids - when you are desperate you will try anything - why not give them a bash nothing ventured nothing gained

 

[Astra]

Hi Stephanie

When I came off Pred I had terrible withdrawal symptoms, ie, joint pain, and the doc told me that this is very common, I still do, but not half as bad
xxx

 

[Entchen]

I am so sorry to hear that you lost your house in the hurricane. I'm having a difficult time watching the news, too -- all the stories about the people who've lost their job over this (especially in the fishery / oysters / etc.), it just seems like one thing after another.

 

[GingerCat]

GingerCat

Hi, I'm also new to this site. I am in a similar situation to you. I was in pretty good health (except for a mild stoke caused by hypertension) until about five years ago when I contracted C.diff. This infection came and went for about 18 months. Although I felt generally unwell, I was pretty much able to manage on a day to day basis until about October 2006, when the diarrhoea came back with a VENGANCE! This got progressively worse until I had to go into hospital where I spent 6 months in a hospital gastro and rehab ward where I was started on IV steroids, prednisalone, mesalazine and azathioprine. This worked really well until I went home. Was told by consultant that I could eat what ever I wanted as it wouldn't have any effect on my Crohn's- WRONG! Didn't realise that a high fibre diet isn't good for my gut so ended up in A&E with severe bleeding. Was doing o.k for a while (except that I had/have severe bleeding episodes if I eat anything with fibre in it),Until consultant put me on iron tablets. This caused diarrhoea and an intolarance to the medication that had up to that point kept me in remission. I had to cajole GI consultant into allowing me to go on elemental drinks (which some doctors will not tell you about unless you do your own research about it). This has helped as I took it whilst on pred, then did lofflex diet. unfortunately two weeks after coming off steroids I am getting a flare up again. Would like to try Low Dose Natrexone but will have to go private as it is not licensed to treat Crohn's in the U.K. Some doctors won't prescribe LDN unless you are already in remission. Has anyone else had a similar situation?

 

[Crohn's 35]

HI Ginger cat! Welcome to the forum! It would be great if you had your own thread on YOUR Story thread so everyone can welcome you. Lots of people from the UK, and they can help you with your answers! Glad you are joining us!

 

[sickofitall]

Hi, I'm also new to this site. I am in a similar situation to you. I was in pretty good health (except for a mild stoke caused by hypertension) until about five years ago when I contracted C.diff. This infection came and went for about 18 months. Although I felt generally unwell, I was pretty much able to manage on a day to day basis until about October 2006, when the diarrhoea came back with a VENGANCE! This got progressively worse until I had to go into hospital where I spent 6 months in a hospital gastro and rehab ward where I was started on IV steroids, prednisalone, mesalazine and azathioprine. This worked really well until I went home. Was told by consultant that I could eat what ever I wanted as it wouldn't have any effect on my Crohn's- WRONG! Didn't realise that a high fibre diet isn't good for my gut so ended up in A&E with severe bleeding. Was doing o.k for a while (except that I had/have severe bleeding episodes if I eat anything with fibre in it),Until consultant put me on iron tablets. This caused diarrhoea and an intolarance to the medication that had up to that point kept me in remission. I had to cajole GI consultant into allowing me to go on elemental drinks (which some doctors will not tell you about unless you do your own research about it). This has helped as I took it whilst on pred, then did lofflex diet. unfortunately two weeks after coming off steroids I am getting a flare up again. Would like to try Low Dose Natrexone but will have to go private as it is not licensed to treat Crohn's in the U.K. Some doctors won't prescribe LDN unless you are already in remission. Has anyone else had a similar situation?

Ginger cat: I should have said that during my diagnosis of Crohns I was also diagnosed with Cdiff. I honestly think it was the Cdiff that did all the initial damage and flared up my crohns. I was on Vancomycin for Cdiff and as soon as it was gone the D was gone, but I was left with horrible Abdominal pain. I really think it did alot of damage to my intestines as I had for at least 3 months before it was properly diagnosed. You should post ur story again so it will get the attn it needs tho. Maybe other people will have ideas. Oh and my GI also says food has nothing to do with it. HA! I wish it didn't, but it does. I guess they don't teach that in med school. IDK. Much luck to u!

 

[Lisa]

Nyx: We got married @ Coco but we honeymooned @ Hedo II. It was interesting to say the least! Good to find a fellow hedo on here.

Make that 2 fellow Hedos here!...lol.....Went back in the early 1990's with a friend.....was interesting also!!!!