South Carolina Crohn's Sufferers

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kd82286

kd82286

Joined
Jun 21, 2011
Messages
67
Hi my fellow Carolinians! I am starting this thread because there is no listed support group currently serving our area. I would love to be able to talk to other native or "transplant" carolinians (lol as we like to call those not born and raised here) about the trials and tribulations as well as the joys and victories of living with crohn's in South Carolina. I would also like to create an opening for any support we can offer one another when it comes to issues involving insurance, doctors, medicaid etc.... I will start by saying that I am a native Charlestonian. I was born and raised in the low country and I am a proud southerner:wink:! I now live and work in Holly Hill which is about an hour north of Charleston. Oh and of course I must add this in here... GO COCKS!!!!!

Next?!?!?!
 
I know this is not what you are looking for, b/c Crohn's was more or less ruled out in my case, but I am in SC also living in Charleston. And a Gamecock fan. Who is your GI? You can PM me if you'd rather, but if my problems ever act up again and I go to a GI I would like to go to a different one. I was born and raised in Columbia and when I got married, moved to Charleston.
 
Lol welcome either way! You wouldnt be involved in the forum if you didnt need support! I see Dr. Marc Noble with Charleston Gastroenterology in West Ashley. He is fabulous as are the other Drs.in his practice!
 
Gooooo cocks! I am from the upstate of the great state of South Carolina. Happy to see other Carolinians on board. You two may have just given me the excuse to come to Charleston. I have family there and I adore the area.

Wendy
 
lol yay for a IBD meet up! This would of course be a meeting where we just go and watch other people enjoy wonderful things we can't eat right! lol:dance:
 
Hey I live in Charleston, SC and was diagnosed with crohn's 4 years ago. I was originally at palmetto digestive disease with Dr. Dorociak but i recently switch do Dr Lohdia. About to start the Humira treatment. Its nice to see some people in my area on the forum! By the way my name is Ian and have lived in Charleston of about 6 years now.
 
Hi Ian! Im so glad so glad you took the time to say hey! I'm actually from Charleston and am planning on moving back soon. I've been on humira since Feb 2010 and it has allowed me to return to a normal life for the most part. I look forward to talking with you more soon!
 
Hey Katie,
I was curious if you have every tried Imuran? I know The Humira works for you and I was suppose to start that recently but Imuran is what he decided on. Just curious because im not really getting any responses on the Imuran forum. ironic! Also when you moving back to Charleston? You should get together with my girlfriend and I for tea somewhere and chat. I have never talked with anyone in my boat before.

Best of Luck

Ian
 
I have actually never tried Imuran. I know there are a few people that regularly post on other forums that have tried it so I will look into it and get back to you. I am actually not sure when I will be back in Charleston full time. Right now I am commuting back and forth between Holly Hill and the city but I would love that once I get settled! I have a few friends with crohns as well as an Aunt since its often Hereditary. Either way though I am always happy to chat via the forum!
Katie
 
Hi all im new to this forum. I probably don't belong here (yet)! We live in Ireland but are thinking of moving to sc. Just wanted to find some info on hospitals and cond consultants in the area. I have Crohns and am currently on imuran and asacolon. Have had remicade in the past but havent needed it so far (fingers crossed ) Just wondering how I'll manage if we move over there. Is the MUSC an option? I see they have an area that deals with digestive diseases which is very comforting, but if anyone has more info that would be great. Also does anyone have info on the whole medical insurance thing? As it is very different from Ireland. If my husband gets a job which provides medical, does it cover his family too? Im guessing we might have to add to it as I have a pre existing condition but Im just wondering if it is affordable. I understand no one can give me an exact price:D but any info would help me out a lot! Sorry for the long post , thanks for reading if you got this far:eek:
 
Hey there mrsirish! First let me say welcome to the Forum! I'm so glad you took the time to contact us and I hope that we as a group can offer some kind of support. I think I can answer all of those questions so I'll start with the question of MUSC. MUSC is a wonderful choice as is the Roper St. Francis Heathcare system. I see a doctor who practices with Roper St. Francis who is an excellent physician but you would do well with a doctor from either group. I would not recommend the Trident system as I have heard nothing good from anyone that uses them. Of course this is all dependent on which part of the state you were to move to. The three I mentioned serve the greater lowcountry area which is mostly the Charleston coastal line. If you plan to try another part of the state let me know and I will gladly get any information I can for you. As for the med insurance question... yes generally family coverage is readily available for employee families it is just up to the subscriber(i.e. your husband) to cover the added premium costs. Also there are now no pre-existing condition clauses attached to insurance coverage thanks to the Obama care laws. You would be covered either way. As it is, medical insurance can be very expensive in the US but considering the cost of heathcare for people with our condition it is much more cost effective to have it than to not. Please feel free to ask if you have any more questions as I would love to answer them! Also, not to sound like one of those ridiculous Americans lol but I really love the Irish accent!(lol just thought I would throw that in there!) Again welcome to the Forum and I look forward to hearing more from you in the future.
 
HI kd82286,

great to hear back from you, thanks for replying and thats wonderful information. Really sets my mind at ease knowing we won't have to worry about the Crohn's situation when relocating. My doc really has a great outlook - he likes to treat it medically leaving surgery as a last last resort. I've been lucky so far with no surgery and I suppose the biggest fear is a new doc will jump in and propose surgery. Am i really paranoid lol?? We are looking at Summerville at the moment as it seems to have a great standard of living, great house prices low taxes etc.. so I'm trying to look at all aspects eg healthcare etc. It's funny -as Irish people we don't think we have an accent at all !! Our daughter is three and we are always joking saying she already has an American accent from watching the Disney Channel, she says trash instead of bin and things like that- she'll fit right in! too much tv lol! Anyway I guess I'll have loads of questions for you as i come across stuff. Thanks so much for your help
Speak soon:ysmile:
 
Lol no you are not paranoid at all. I think we all have that same fear. Summerville is actually only about twenty minutes from charleston so you could try musc or roper. Trident is actually in summerville but as I said I wouldn't recommend them. Another excellent, but rather new choice is summerville medical center. They are smaller but centrally located in the heart of the city and have excellent doctors. Also they are on the same street as multiple other specialist with all three major hospital's. There is also a test lab right down the road which is very convenient for those of us that have a lot of blood work done lol. If you have any questions about anything else aside from the crohns please feel free to ask. I'm actually a certified early childhood teacher so I can probably offer you some good childcare options should the need arise! What field is your husband in? Does he have any options lined up yet?
 
Great I'll keep you in mind. Might need to pick your brain re schools too!!! They seem to be good in summerville but I will need to research which ones I guess. My husband is in IT, nothing lined up yet. It's only early days for us. We have only just started looking so could be a year or so before we move. He is checking out what's online though to get a feel for what's out there. Am a bit worried about affordability. Does medical insurance take a good portion of wages? Even if your employer is paying for it? What are the added premiuim costs you mentioned about?
 
Summerville has an excellent school district two of my cousins teach there. SC ranks pretty low nationally far as education but its very dependant upon what district they are in. A lot of the rural arts are very poor. Unfortunately they make up a large percentage of the state. Summerville is probably the best choice you could make in the lowcountry. As for insurance costs that's gonna depend on what provider you have. Blue cross blue shield is probably the most common provider in the state. My coverage is about $80 a month for med dental and vision. Its a great plan but I work for a large corporation so they supplement part of my premium costs. Some companies will pay for employee benefits and then all thats left is the cost of dependant coverage. That's dependant upon age and whether you are a smoker or non smoker. The cost however just depends on what company he winds up with. I am by no means well off but I make a decent living and can comfortably afford the costs of heath insurance. If he works in IT he should be fine. If he is interested in government contract work tell him to look into SPAWAR Charleston. It's close to Summerville and the companies that are based there are heavily IT structured. Also they generally offer excellent heath insurance coverage. Also there are quite a few nation wide companies based in South Carolina, Pepsi for one is located in Larson which is literally moments from anywhere in Summerville. My father works in Charleston as a computer programmer for a company based out of Ohio and luckily IT work has for the most part been recession proof in the US. What kind of IT does he specialize in? I mah be able to offer a few other suggestions with a more specific field.
 
Thanks so much for all this info its great! Really appreciate it. My hubby is a Network Administrator. How is your Crohns doing ? :smile:
 
He won't have any trouble finding a job! My crohns was in remission but my humira is either not working anymore or I ate something I shouldn't have because I've been flaring for a week or so. I put myself on a liquid diet lol. I'm an ensure junky when my belly hurts. Its not as bad as it has been though. How about you? And you are very welcome by the way I don't mind answering any questions you might have.
Katie
 
Ah! This is a wonderful idea. I'm in Columbia, originally from NC. Going to law school at USC. My GI is Dr. March Seabrook from SC Gastro/Consultants in Gastroenterology. I highly recommend him/his partners to anyone in need of a GI in the Columbia/Lexington area.

My story: I was diagnosed in May 2011. I hadn't been feeling 100% since February, but chalked it up to stress, not eating as healthy as I should have, and drinking far too much caffeine. I actually thought I had an ovarian cyst, but the CT revealed a 3-inch abscess by my terminal ileum. The radiologist basically said I should've been writhing on the floor in pain for months, not living a normal life. After a month of being in and out of the hospital, I had a resection up in NC (to recover at my parents) and had ~13 inches removed -- I believe they called it an ileocecal colectomy. Been pretty much fine since then, hoping to stay that way!

On another note, did anyone do the 9/16 Charleston Take Steps and/or is anyone plan on doing the 10/21 Columbia Take Steps? I'm looking into trying to get some of my law school friends to do the Columbia walk. I'm also looking into joining the Carolinas Chapter for Team Challenge to train for a half-marathon or a triathlon!
 
Thanks Katie! I have been doing great since 2008 , 2nd attempt at Remicade sorted me out. Have had some hiccups but compared to what I was am much better. Although it has been playing up the last few weeks so I'm trying to be careful too! No dairy or wheat. I've been on antibiotics since July for recurring kidney infection, chest infection so I think that's what is playing havoc with my system.
Aisling
 
elizamt said:
Ah! This is a wonderful idea. I'm in Columbia, originally from NC. Going to law school at USC. My GI is Dr. March Seabrook from SC Gastro/Consultants in Gastroenterology. I highly recommend him/his partners to anyone in need of a GI in the Columbia/Lexington area.

My story: I was diagnosed in May 2011. I hadn't been feeling 100% since February, but chalked it up to stress, not eating as healthy as I should have, and drinking far too much caffeine. I actually thought I had an ovarian cyst, but the CT revealed a 3-inch abscess by my terminal ileum. The radiologist basically said I should've been writhing on the floor in pain for months, not living a normal life. After a month of being in and out of the hospital, I had a resection up in NC (to recover at my parents) and had ~13 inches removed -- I believe they called it an ileocecal colectomy. Been pretty much fine since then, hoping to stay that way!

On another note, did anyone do the 9/16 Charleston Take Steps and/or is anyone plan on doing the 10/21 Columbia Take Steps? I'm looking into trying to get some of my law school friends to do the Columbia walk. I'm also looking into joining the Carolinas Chapter for Team Challenge to train for a half-marathon or a triathlon!
Click to expand...

Welcome!!! Sorry it took me so long to reply but it has been a very hectic week! Thank you so much for sharing your story and your Doctors reference. I must say that I was unaware of the Charleston Take Steps for Crohn's and Colitis walk but I may very well consider the Columbia walk! I will have to look into it. I am going to attach the link to there website should anyone else like to get involved. http://online.ccfa.org/site/TR/2012TakeStepsWalk/Chapter-Carolinas?pg=entry&fr_id=3180
 
Hello, my husband has crohns and we have recently moved to the Upstate SC area. We need to find a good doctor, but don't want to just randomly select form online. Does anyone have any recommendations? Thanks.
 
Welcome raean7! I live in the low country area so I am not familiar with any doctors upstate, however I can recommend an excellent Crohn's/colitis resource for that and so many others things! Ccfa.org offers a local physician finder tool that is great! Please let me know if I can help in any other way, I am thrilled to welcome you to the great state of South Carolina!
 
Hi! I'm a native South Carolinian (GRITS). My daughter (7 yrs old)was just diagnosed March 6 with Crohn's. We are trying to decide on her treatment options. We are torn and afraid. Imuran or Remicade? We see the pediatric GI at MUSC. We go to MUSC for all her specialty needs. My family and I moved back to SC about two years ago after living in Phoenix, Austin, Miami and I have to say we've always had grade A care.

mrsirish- I have an Irish neighbor. Her name is, Goffinet McLaren. She has a children's book~ Sullie Saves the Seas. If you move to the Charleston area you shouldn't have any problem finding a doctor. I recommend MUSC. MY OB/GYN is affiliated with Roper St. Francis and I'm pleased with my doctor. Best wishes!

-j
 
Thank you for the reply! We did look on the ccfa website and there was one MD named in our area, but on health grades he received poor comments.I'm not sure if that is very credible, though. I think we may try to get into see him and try him out. Thanks!
 
Typical response of you low country folks. ;)

I've had Crohn's for about 26 years. About two years after diagnosis I was in remission for 15 years. Then it roared back to life and I was on Remicade for the next seven years, which put it back into remission. I've been off Remicade (and all drugs for Crohn's) for three years now.

Back in Dec I started vomiting. Thought I had a bug, so thought not much of it. Then vomited again a week later. Made an appt to see my GI. A colonoscopy and upper GI series showed nothing. Been vomiting every week or two now and every time I eat solid food I get gurgles and pressure and pain that slowly builds over the course of a week or two until I vomit. Then I feel fine while it slowly builds again.

Had a CT scan this morning and am awaiting the results. I don't know what it is yet but I'll find out soon hopefully.

My Crohn's has always been in the large intestines but since the colonoscopy ruled out activity there it's either moved to the small bowel or I have something else going on.

That's my abridged Crohn's story! :)
 
Lol I feel your pain SCCrohnie. Humira is beginning to fail me and I'm the poster child for GI's that want a challenge. Welcome to the group and feel free to use me and the board for support or anything else we can do for you!
 
Thanks KD. I appreciate the warm welcome. I'll overlook your Gamecock allegiance since you're so polite. ;)
 
Hey All, I have another question. We went to a local doctor here and didn't hear anything new. Oh well. Here is my question, though. My husband is contemplating starting humira. Do any of you know someone who takes it? If so, has it seemed to help? My husband is concerned about taking it and still having to have surgery nearly as often, because he can't work and take the humira due to his type of profession, but he can work if he has periodic surgery; so it would only be useful to alter his life completely if surgery was nearly preventable. Any experiences that may help shed light on its usefulness?
 
Hello, SCCrohnie... I don't have Crohns but my husband does, diagnosed in September of last year. We aren't from SC but we are from NC, near the Mooresville area, NASCAR country.. lol..

If I may, what put you into remission for 15 years?
 
Hi Amber!

The first go-round it was prednisone and sulfa drugs (these were the pioneering years of Crohn's before biologics were available!). That put me in remission for 15 years. Remicade put me in remission for about another nine years, seven years of that while on the drug.

I've been to Mooresville many times. It's just up the interstate from me about 35 miles.
 
Lol I'm on my lunch break and I have an app on my phone. Yeah same ol same for the most part! How about you?
 
Don't feel well today. Need to vomit but can't. Just looking for a smiling face until I can finally manage to pull it off. :)

How's lunch?
 
Awe that stinks😣 sorry I've been MIA just been a hectic couple days. How are you feeling SCCrohnie?
 
I was sick about all weekend. I can't wait to start Cimzia this week. I got used to being in remission. I forgot how bad Crohn's can make you feel. :)

Are you doing okay?
 
Yeah I'm about normal for me lol. I've never had 100% remission. I've been on twice monthly humira since 2010 but my doc is tryin to get me bumped to weekly cause it's not workin at all after a week. Let me know how cimzia is cause that's next for me!
 
I had a choice of Humira or Cimzia. I read the Humira pens were more painful than the Cimzia syringes so that's why I opted for the latter. :)

I'll keep you posted. The meds arrive Tuesday and I suspect I'll get a nurse out here as early as Wednesday to inject me.

I was like you while on Remicade, except I had to get my dose doubled over the same time period instead of an increased frequency of infusions. But that was a really good drug which put me in remission. I sometimes wonder if I should have stopped taking it...
 
Don't get me wrong the humira saved my life! I had been hospitalized for over a week and lost 30lbs on a 5 foot frame that I couldn't really afford to lose! It's been great but I've been on and off of prednisone almost since I started it. It curbs the beast, lol it just doesn't silence it😉
 
I'm down 35 pounds from my remission period. Another 5-10 pounds and it's going to be a critical situation for me.

I've never been hospitalized though. Did you have any surgery or were you there to get stabilized?
 
I'm drinking lots of fluids but I haven't eaten since Saturday afternoon. Usually when I vomit I feel great but this time I haven't managed to get it all up and out yet so the pain lingers.

I have three areas of narrowing of the small bowel but I still have BMs so it's not a complete obstruction.

I'm avoiding the hospital for now. I have too many responsibilities to be in there. As long as I can still walk, talk and drink I'm going to hold out. :)

How are your symptoms nowadays? I know how well Prednisone works to curb flares but my doc doesn't believe in using it, at least not in any long-term capacity.
 
They're pretty normal for me. 8-10 times a day is average for me and that's about how I've been lately. The winter was bad. It was 20+ times a day plus the vomiting so I was on a strict liquid low residue diet. It was stress from work. I changed companies in January so it's calmed down a lot! Prednisone is always my last resort but I also have rheumatoid arthritis and reynauds so sometimes I just have to suck it up and take it lol.
 
You poor thing. You have a double-whammy. I'm sorry you're fighting two painful diseases. Be well my friend. :)
 
My mom has RA. I see how she struggles. It's not an enjoyable disease.

You ever had any biologics besides Humira?
 
No it's not lol. But at 27 I try to look at the positives if I can and ignore the negatives since I hopefully still have a long time to live with it😉 and no humira was the first one I tried. I lived to far away from MUSC to do remicade and cimzia had just been released.
 
I asked for Cimzia specifically because I'd read about how painful the Humira pen injections are. :)

You have the right attitude. In my 20s (and 30s!) I took my health for granted. Now I see that it's vitally important to maintain good health and keep on top of your conditions to help keep them in check.

Is the MUSC in Charleston or Columbia?
 
Lol it's not that bad. It burns for like five minutes but it gets easier every time. And YES!!! I've never been someone that was the picture of health but I'd give anything to go back to my teens and have a few more years of no Crohn's lol!

MUSC is in downtown Charleston. It was the only place you could do remicade in SC at the time.
 
That's a very hard thing to admit for me - not being someone who is the picture of health. The Crohn's has hit me very hard this time around though and I get questioned about why I've lost weight by some folks. It's supremely annoying and, frankly, none of anyone's business.

I've always lived like I had no chronic issues and tried to be the everyday person. I don't want pity. I just want respect.
 
I feel the same way. I hate comments about my weight in either direction. I'm tiny but when I'm on the prednisone my face is the first place to gain and I can't stand people that make remarks about it!
 
Oh I remember the days of Prednisone. My face looked like a blimp. A big pale blimp.

High school was hard as a pale blimp face! :D

I'm glad you and I can relate. We'll eventually look back on all this and laugh, right? Right?
 
Lol yup! I laugh about it daily😉 I call the Crohn's the lil man that is stabbing me in my belly. My friends even talk about him lol
 
My best friend is (jokingly) convinced I've given him CD. Then I tell him about all of the horrible tests and procedures I've had done and ask him to get himself checked out. He refuses. It's funny.

The lil man stabbing me in the belly needs to hurry up and go away so I can go back to eating something besides mush!
 
lol I know the feeling. Any time my friends say their stomachs hurt I tell them they might have caught the crohn's lol
 
Obviously you weren't wearing your "Contagious! Stay Away!" sign again. What am I going to do with you? ;)
 

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