The STRESS of the Big Apple

Introduction:

My name is Andrea and I’m 28 from New York City. I’m a photographer/graphic designer/jewelry designer. I love being outside, either taking photos or working out!

The New York City Colitis Experience:

I was diagnosed with ulcerative colitis in September 2011.

I noticed while on vacation over Labor Day, that foods just weren’t agreeing with me. I thought it was just a fluke and pushed it off. When I returned to NYC, it didn’t go away. Then my birthday arrived and I was terribly sick – I was convinced I had the flu. I went to my primary and she agreed that I had the flu. After a week I felt like I got worse than better, so I went to the hospital. I explained my symptoms and the ER doctor thought I was just severely dehydrated with the flu. So he gave me Immodium, Pepto and fluids, then sent me on my way. Two days later I was supposed to have a follow up appointment with my primary doctor, but I called and told her I was too sick to come in, so she told me I have to go to the hospital again. I went back to the hospital and checked in. Needless to say, the ER was surprised to see I had returned, so he made sure I got in immediately.

I spent a week in the hospital. I was assigned a horrible GI doctor and an even worse internal medical doctor. By the end of the week, I was discharged. I was given a low dose of Asacol and 40Mg of Prednisone. My IM doctor told me to ignore the diet the dietitian had given me. He called it the wonder bread diet. He gave me stacks of papers on how I should be eating. Since I had no idea what I was up against, I decided to go with his plan – which was to become a vegetarian. He said I was only to have an egg or nuts for protein. For 3 weeks, I followed his plan, which almost killed me. I lost close to 30 pounds in 3 weeks. I was having a hard time setting up a follow up colonoscopy and I was horrified at the partial one they did in the hospital. The doctor was beyond rude, he bickered with his nurses and yelled at me thru the procedure since he didn’t think it was necessary to put me under.

I found a new GI doctor who did the follow up colonoscopy. He was shocked at how severe my case was. In the 6 weeks after leaving the hospital, my colon had not gone down in size, but my ulcers were healed. I wasn’t tolerating the steroid – the side effects were taking a huge toll on me. My doctor started weaning me off of it. At that time, he recommended that I start taking 6MP as a replacement for the steroid because of the severity of my case. He explained that this drug was a great one – basically no side effects, but it would lower my immune system. So again, I trusted him.

Currently I am off of the steroid. I continue to take Asacol and 6MP. However, my doctor was certainly wrong about 6MP not having side effects. My hair is severely falling out and my teeth are sensitive. I hope these are temporary because the hair loss is really upsetting me. Luckily I have thick, curly hair, but now it is very thin and coarse. I know losing my hair sounds silly, but its something that people have begun to notice.

I’m still getting used to the idea that I have UC. I’m still very frustrated at how all of my doctors have persuaded into taking their direction which hasn’t worked for me. What may be most frustrating is how hard it is to find a decent doctor in New York City!

I do not like being on medications. The Asacol doesn’t bother me, but I am open to suggestions on what to do about the 6MP. I have been looking into the SCD. I would prefer to control UC with diet and as little medication as possible.

Colitis Medications:

Asacol
6MP

 

written by Andrea

Submitted in the Colitis Venting Area

****** Another story about hair loss written by Carol might help you out:

http://www.ihaveuc.com/hair-loss-due-to-a-bad-flare-or-medication/

6mp, asacol

22 Responses to The STRESS of the Big Apple

  1. Brooke February 10, 2012 at 8:55 am #

    Hey Andrea!

    Unfortunately hair loss is very common with US meds. I struggled with meds for 5 years and always had acne and hair problems. The best decision I ever made was having J Pouch surgery Dec. 29, 2011. I’m still in recovery but already feel SO MUCH BETTER. It’s night and day. The reason why I mention the surgery is b/c I too am a photographer and graphic designer. I know how much UC holds you back from getting out and being social with clients. It hindered my creativity and sucked the life out of my work. Now that I’m no longer on meds my hair is growing back! I have short little baby hairs that are coming in…and I’m really looking forward to having my normal head of hair soon. If you ever need someone to talk to, feel free to contact me. I am pro surgery route…but also understand that it’s a big decision. I’ve taken every med out there as well…if you have those kinds of questions. Good luck gal!

    • Andrea February 12, 2012 at 5:16 pm #

      Hi Brooke!
      Its really frustrating to lose my hair especially when my UC seems to be under control! When I was eating all vegetarian, I was attached to a bathroom, but since incorporating meat into my diet, it has really cleared up. So for months I feel like I am in control. I did have a severe case and my current doctor was surprised at how well I actually feel even when my colon was still enflamed. I don’t mind the Asacol and I don’t have any problems with it. The 6MP is the one I am very worried about. I also was told to go on Biotin because I am anemic, but I changed to just a generic brand of Iron. I think I will go back to the Biotin since it seemed to help Princess PP. Right now I’m not sure that surgery would be my best option because I do feel that I am in control with medication. I just picked up all of the supplies to start the SCD diet and I hope to start in a day or so. Getting 4 or 5 consecutive hours of downtime in NYC is rare!
      Thanks!
      Andrea

  2. Jennifer B. February 10, 2012 at 8:56 am #

    Bless your heart. I had the same problem as you, with the hair loss. I went to GNC and they put me on a supplement that helped. I have very thin hair, but a lot of it. I can’t remember the vitamin, but whatever it was worked. My hair did begin to fill in. I mean you could see my scalp through my hair! Thank God my husband was doing military training and wasn’t home to see it. LOL……So that is my advice. And know you are not alone. We’ve all been there, so email if you have any questions.

    Jennifer
    17Feb11 Total colectomy
    12July2011 Jpouch takedown

    Meds: asacol, llialda, prednisone, steroid enemas, Remicade-nothing worked! But surgery did yeah!

    • Andrea February 12, 2012 at 5:23 pm #

      Hi Jennifer!
      I will stop into GNC tomorrow and see if they have any suggestions! I’m worried to color my hair tho. The salon I go to uses an intense coloring treatment. I fear it would make my hair worse and damage it!
      Thanks!
      Andrea

    • Pam February 19, 2012 at 8:44 pm #

      Jennifer, can you tell how many months from removal to using pouch? Also do you know if removal can be robotic surgery? Thanks Mom to newly diagnosed son

  3. Heather
    Heather February 10, 2012 at 9:47 am #

    Andrea
    I was diagnosed 6 months ago with UC and Crohns and I am currently take 5mg of prednisone and lialda. I have noticed my teeth are very sensitive to cold and even being outside breathing in cold air hurts them to the core! I am also seeing a lot of hair loss. I have not found a way to stop either but do plan to talk to my GI about it soon.
    Good luck and hope it helps to know you arent the only one out there I am feeling your pain as well.
    Heather
    Meds: lialda, prednisone, anucort

    • Andrea February 12, 2012 at 5:25 pm #

      Hi Heather!
      I am going to be calling my GI doctor tomorrow about this hair loss! I hate to complain; I’m one that likes to tough it out by myself. I’m so glad I found this site… wish I found it sooner!
      Thanks,
      Andrea

  4. Princess PP February 10, 2012 at 9:50 am #

    Biotin has worked great for me. It is a dietary supplement you can buy at WalMart or Sam’s Club, probably GNC. It is for hair, skin and nails. I had severe hair loss, not sure from what meds but I too was on Lialda, prednisone, canasa. Currently I’m on Remicade and Imuran only. I have anemia too which is common for UC sufferers. Biotin has promoted new growth. I used to be a “two turn” hair tie measure but when it took three or four turns to tie back my hair I really started to freak out. I had long thick curly hair. After my last hospitalization the nurse recommended Biotin. I got a haircut, started biotin and after two weeks I could see my baby hairs poking through. My hair texture has changed. I’m not so curly, just wavy but I’m not losing as much. Good luck with your UC adventure. It’s a work in progress finding the right combination of meds. I did see a homeopath and that helped too but I felt that my natural doc and western doc were working against each other, offering conflicting advice. My western doc did make the most sense. He said that I was better than I was at my worst with meds. That natural remedies were beneficial and that acupuncture was relaxing but slowly tapering my western meds to find the least amount that keeps my UC in control and still seeing my naturopath was the best course. My naturopath wanted me to kick all meds cold turkey. I hope to get there someday but all in due time.

    • Andrea February 12, 2012 at 5:32 pm #

      Hi Princess!
      I am also anemic… and it certainly didn’t help going vegetarian! I have been debating if I should cut my hair. I know it sounds silly, but I love my hair and cutting it would mean that I am letting these drugs win! I would like to cut the drugs and go all natural. I think the SCD diet will do me well, but the temptations of foods is certainly tough, especially when I don’t seem to react to much.
      Thanks!
      Andrea

  5. Bev February 10, 2012 at 5:11 pm #

    Hi Andrea,

    Please look into fecal bacteriotherapy. From now on, that’s all I am going to recommend to EVERYONE.

    If you haven’t heard of it, it is basically replacing the good bacteria in your colon, through…fecal enemas. Yes, it’s true, and I know it sounds gross, but if you are like me, and cannot and will not tolerate all of these dangerous UC drugs, then it’s a natural way to get CURED!! I am awaiting the procedure right now. Please read about it on this website from STACY, who had it done, and is now symptom FREE.

    It is all of our right to have access to this procedure!

    Cheers, a bit of a radical, but a hippie at heart,
    Bev:)

    • Andrea February 12, 2012 at 5:35 pm #

      Hi Bev –
      Thanks for your suggestion! My current doctor did prescribe that and I do have them, but I was too much of a chicken to try it! I think if I am able to stop to 6MP I will incorporate them into my routine!
      Thanks!
      Andrea

    • Pam February 19, 2012 at 8:47 pm #

      I have read about this too, where is this being done? In the US?? Nothing is so gross if it works. Thanks Pam

  6. Johnny Drama
    Johnnydrama February 10, 2012 at 6:22 pm #

    What’s up Andrea! Good to hear your story! Sorry to hear what you are going through. I myself experienced a intense flareup for over a a month before I got the colonoscopy on jam 26 2011. Now I’m on 3 pills of lialda a day and also experience hair loss. It could be a combination of many things, but feel lialda contributes to most of it. I have long hair for a dude. Thick and wavy/curly and experience a large loss of hair every time I shower. Its very depressing, but all pills have side affects which sucks! I feel having uc alone causes hair loss due to stress and overall absorbtion of nutrients problems,but hate the fact that it’s one of the main side affects from lialda! The other harder steroids contribute more to hair loss though. So once your off them and get back to living more normal,I bet you start seeing less hair falling out. Ive been on the scd diet for about a year. I follow it religiously, hoping to not experience the pain of a major flare up again, good luck and hang in their! I highly recommend the diet! And highly recommend avoiding milk and alochol! Talk about a pain in the rear! Been sober for 13 months and I just turned 21 two months ago, I also changed my whole diet in a few days after I was diagnosed back in jan 2011. So If a 20 year old dude can follow it, anyone can! Good luck!!! keep posting updates on the site to let us know how your doing!!!
    Johnny drama

    • Andrea February 12, 2012 at 5:55 pm #

      Hi Johnnydrama!
      I am very glad to hear that the SCD diet has worked for you!!! I bought everything to kick off the program, but I haven’t had enough time to make the into soup! I really would like to read the whole book start to finish so I know what I am up against (I’m reading the phases now). Living in NYC and having lots of friends visit who want to hit up yummy restaurants is tough. I have friends coming in the next month that want to go out to dinner and to bars. I am one that does something 100% and hate to be thrown off with a temptation. With food currently, I eat whatever I want and I can honestly say the only thing I notice that I have trouble with is chocolate. What put me in the hospital was Thai and I haven’t come close in touching that and I never will again!!!
      I am excited to start this diet because it will confirm what foods I am able to eat without problems. Luckily I am not a huge fan of milk and when I do have it, I drink Lactaid which seems to agree me. I do like to have the occasional drink, which also doesn’t seem to bother me. I was terrified to drink anything for months when I was really sick in my vegetarian time.
      My big concern for this diet is how realistic it is… I may not have read far enough into the book for it to be fully explained tho. What is your approach if you go out to dinner? Obviously, you have been doing this for over a year – so you have made it work for your lifestyle!
      Thanks!
      Andrea

  7. Rebeka
    Rebeka February 12, 2012 at 9:40 pm #

    Wow, it’s interesting to read that so many of us have problems with hair loss (and acne). I am only on Lialda now and have pretty bad hairloss. I just cut it last week, because it just looked stupid as a pencil-thin pony tail. I thought if I lowered the dose, the hairloss would be less. I went from 4.8g to 2.4g and now 1.2g. It has been two months since I have initially lowered the meds but it hasn’t really changed anything. I guess the positive thing is that I could tolerate the lower dose. Maybe it’s time to try without soon…

    • Jane February 16, 2012 at 3:22 am #

      Hi Rebeka

      I am on imuran 150mg per day and since new year have started to experience a lot of hair loss. I started Imuran at the beginning of October. It appears to be working for the bowels however, I am quite concerned about the hair loss. My doctor did not seem to think hair loss was a major symptom…he even wasn’t sure it was a side effect and had to look it up on the computer ?????

      Jane

  8. Johnny Drama
    Johnnydrama February 17, 2012 at 4:28 pm #

    Hey, Andrea! Good to hear from you. I was totally in your shoes! Im not in NYC where the dinning experience is one of a kind, but i have a hard time orderinges when I go out to eat. Overall I order a salad with chicken and usually a side of vegetables or fruit, but honestly it’s hard and tempting! Especially when you really want to cheat on the diet. For instance at my sisters college graduation, my parents rented out a bar and they had tons of amazing food catered in and free drinks so that was soooo tempting! But I had to ask myself is it worth it… would I flare up if I cheated?? If so is that really worth the agony of a flare up…lol not at all. So I definitely been in many more similar situations and you will be too. As for my meal routine, I start off every morning with 6 eggs(4 just the whites) some green pepper , 4 pieces of ham,all cooked in olive oil along with s banana and cup of tropicana oj. That udulu gets me through mid afternoon where I usually broil chicken breast or burgers or fry up some fish.. Always with a veggie side of peas or boiled carrots. I snack on peanut butter with honey eat lots of fruit like apples or grapes(don’t eat peelings lol) or strawberrys pears etc and always at night eat a big salad. I’m going to make a video sometime of my meals.. I have to ask Adam if it coo… Anyways good luck
    My goal is to also get off meds. I’m going to start taking less and eventually be off by summer time. If d goes right!
    Good luck fellow Uc’erzzzz!

  9. Athana February 20, 2012 at 8:58 am #

    Hi! A lot of what you say sounds quite similar to my experience, but I wanted to share with you my hair experience, specifically. I am 35, and my hair had been falling out for years. It got to the point where it was really quite obvious and I had to start doing comb overs, and “placing” my hair so that covered my scalp. (sort of anyway) I looked terrible. Finally I just said F*** it, and shaved the whole thing with an electric shaver. I use a “1” guard for it. I get compliments all the time now! Granted, the look is not for everybody, but I found it empowering. The drawback…while men compliment all the time on my great haircut, women tend to ask me how I am feeling, assuming I have had Chemo. Sigh. I still feel it was the best decision. :)

  10. Erin
    Erin August 29, 2012 at 5:44 pm #

    Hi
    i had the same problem when i was on that, although i was only on if for a short time because it ended up giving me seizures, if it continues to bother you you could always talk to your doctor about switching meds, are talk to your hair dresser and dentist to see what they recommend. when i got off the 6-mp both got better for me.

  11. Ada August 29, 2012 at 10:01 pm #

    Hi Andrea,

    I started having symptoms with U.C. Sept. 2011 also but wasn’t diagnosed till December due to being at a new job without health insurance kicking in yet. I had a couple of horrible experiences with an e.r. visit and another doctor. Once my body gave in to being so anemic and malnutritioned from being unable to tolerate any food I ended up at N.Y. Presbyterian Hospital. They have an amazing team of doctors who specialize in treating U.C. and a separate unit just for post op g.I. patients and a support group. If you need a new doctor try Dr. Charles Maltz he is my doctor and if you need a surgeon Dr. Kelly Garrett. She did all my surgeries. I am actually just 2 weeks weeks takedown post op come this Friday. They are both from the hospital and having their own offices within a block from the hospital. Good luck to you! If you need any other info. Or help in NYC let me know. :-)

  12. Georgianna April 27, 2013 at 4:10 am #

    Hi everyone, I too have UC and have been through the horrors of the evil drugs they prescribe us that make us worse off than before. Here is what I’ve recently learned through hours and hours of research and I’m going to give all of them a go, it is absolutely amazing the things you can find out on you own. Doctors dont tell you about these things, because they and the drug companies don’t make money from curing you! Please look at these websites:

    http://fecalmicrobiotatransplantation.com/FMT/contact.html

    lowdosenaltrexone.org/

    and also look into Nicotine therapy (instead of starting smoking just start the patch or ecigs. I would say the patch is safer, start with the lower dose 7mg, and work up to 14mg if it doesn’t work. If you start with 14mg you may have nausea and such. I just started the 7mg 2 days ago, and am going into remission from it! :-o)

    And have your doctors prescribe you VSL # 3 RX strength! They can do it in such a way that your insurance will pay for it.

    Good luck to all!

    Georgie

  13. Vin October 29, 2013 at 1:43 pm #

    Hi Andrea,
    I was diagnosed back in November 2010; I won’t go into too many details with my first doc, because he wasn’t good. But I’m in the NYC area, and a family friend (and former insurance claims adjuster who was one of those guys who ‘knows everybody’ in the best sense of the term) introduced me to my current Doctor- Dr. Peter Legnani. If you’re still looking for a doctor within NYC, he’s on the upper east side, 91st and York, and associated with Mount Sinai. In short, he’s an amazing doctor, and really helped get me on track.
    Prior to last August, I had what was considered Ulcerative Proctitis, which is UC but limited to the rectum. But a few days after my birthday in mid august, I ended up spending the better part of two weeks in the hospital after finding out the severe pains I was having were now full-blown UC and C-Diff to be the cherry on top.
    This trip was obviously absolutely miserable for me; I was in extreme pain and for a while things were pretty bad. But during the whole time (and before, and obviously since), Dr. Legnani and his staff were absolutely amazing. His bedside manner was impeccable, and he always sat down with my family and myself to answer any questions anyone had (and thanks to some in my family, sometimes answering the same questions many times over). He never failed to answer a question or have any hint in his voice of any loss of patience like I’ve experienced with other doctors. He was obviously very helpful and I’m doing much better now- not perfect, but we’re working on it- and I can’t describe just how amazing the experience was, both in terms of the pain and the recovery process. Without his help, and his level of care, I have no idea where I’d be. But I can tell you this, if you want a great experience with a doctor in NYC, go see Dr. Peter Legnani.

    – Vin
    Current UC Meds: Remicade, 6MP, Lialda, Canasa, probiotics, vitamin supplements (I know it’s a lot, but I’m slowly on my way down).

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