Please Help!! Hair Loss & and New Stomach Pain :(

Introduction:

Hi, I’m Christine, and I was diagnosed with UC in Feb. 09, with about 6-7 months of symptoms before the diagnosis. I’ve written about my full story before( “Wanting a New Colon For Christmas“, so I don’t want to bore you, but as you all know, it’s been quite the roller coaster :/

My Story:

OK, I have two questions that may be unrelated to each other. When I’m having a flare, I get the full sha-bang: horrible urgency, going to the bathroom up to 20x’s a day, bloody diarrhea, joint pain, extreme fatigue, etc.
Back in Sept. 2011, I was taking Colazal (3 pills, 3x a day) which I had been on since my diagnosis, in addition to 6MP (also called mercaptopurine) which I’d been taking for close to year to due a flare that wouldn’t let up. However, I had started to notice some dramatic hair loss (even my hair dresser noticed)…no bald spots, but major thinning. My gastro thought the Colazal might be the culprit and because I had been flare-free for about 6 months, they thought that I could gradually taper off the Colazal and continue to use the 6MP for maintanence. BAAAAAD idea. By the time I tapered off the med, and a month or so passed Colazal-free, I landed in the ER with the worst and most sudden flare that I’ve ever had. By that time, my hair had started to grow back…I had baby sprouts all over my head and as ridiculous as it sounds, I was thrilled. However, this flare wasn’t letting up, I missed 8 straight days of work, had to have another colonoscopy (my 4th), and things were bad. So, I had to go back on the Colazal. I didn’t even care, I was in so much pain. But now, about 7 months after re-starting the drug, I think my hair is falling out again :( I’m so upset, and am wondering if anyone else has experienced this. If so , did you find anything that helped? I tried the supplement Biotin, with limited success. ANY ideas are greatly appreciated!

My 2nd question has to do with the fact that for the past 3 weeks, I have had an intense burning in my lower stomach (like where my belly button is). I called my gastro, and Prilosec was suggested. I have an appointment with them in 2 weeks in case it’s still happening. I’m on day 4 of Prilosec (it says on the box that most people experience relief in 1-4 days) and it is no better. It lasts pretty much 24-7 and keeps me up at night. Has anyone with UC also had anything like this? It’s a completely different pain than UC, but the burning is intense. It’s also usually followed by diarrhea.

Where I’d like to be in 1 year:

To be flare-free for a full year and able to go off even some of my meds. To not waste time laying around the house because I feel like crap (I’ve had to do waaaaaay to much of that!). To not have colitis be a thought in my mind every day, worrying that it will once again rear it’s ugly head. That would all be wonderful~

written by Christine

submitted in the colitis venting area




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hair loss

17 Responses to Please Help!! Hair Loss & and New Stomach Pain :(

  1. Julie July 31, 2012 at 7:38 am #

    Bless your heart. My daughter has UC and over the past year has had times of hair loss, due to the medications (first 6MP, then Remicade). After a period of time, the hair loss slowed down and started growing back. The dermatologist they sent her to (because she also had a horrible rash) said that it is indeed the medication (even though most doctors say that it isn’t), and that it takes about 6 months for the body to adjust. Her hairdresser gave her a shampoo that helps some, and she learned to pile her hair on her head (she has a beautiful curly head of hair). Thankfully, she normally has a thick head of hair, but it’s still devastating. Hang in there. I’ve learned how rough this is over the past couple of years. Also, Prevacid is stronger and better than Prilosec. Prevacid is also over the counter. You might give it a try. Hope things improve for you.

    • Christine August 3, 2012 at 2:13 pm #

      Julie, thanks so much for your encouraging words and advice. Maybe I should see a dermatologist…and like the one your daughter went to, I definitely believe that the medications are the cause of the hair loss. It seemed to be due to the Colazal, but it very well could be the 6MP. Like your daughter, I had really thick (not curly, tho!)hair for all of my life. About half of my hair has gradually fallen out which has been so hard for me…but I am thankful that I had a lot of hair to start out with. I had a time period when I thought it was growing back and not falling out anymore, but the falling out has started again :(. It’s like it is going in cycles. I’ve been on the 6MP for about a year and a half, so I would’ve hoped my body would adjust by now. It’s all just very frustrating and confusing. I’ll be asking my gastro about Prevacid. Thankfully, the Prilosec seems to have started to finally work! Still have some cramping, but not the terrible burning. Now that you’re all up to date ;), thank you again for writing and helping me. I appreciate it so much. I hope your daughter is doing well~

  2. Chris July 31, 2012 at 7:52 am #

    Christine, sorry to hear you are feeling so bad. I have also had that burning feeling before, the dr. at the time said it was from 1 of my meds and so he switched and it went away. I currently take asacol and mercaptapurine. I have also had thinning of my hair on top. If you find a remedy for the hair loss let me know! I am about to buy a wig, I use to have really thick hair. Good luck and hope the burning goes away!

    • Christine August 3, 2012 at 2:55 pm #

      Chris, believe me, if I find something for the hair loss, I’ll be sure to scream it from the rooftops!! Read the rest of this thread…Trina had another suggestion (other than Biotin, which I am going to start again). Best of luck to you~~

  3. Rico July 31, 2012 at 11:00 am #

    Christine,sorry to hear your not doing well,I just got the jpouch surgery 3 weeks ago,I’m feeling so much better,the docs just want to keep feeding you all the crap meds that make things worst,been on all the meds too,and it was killin me,they just want to sell there drugs,well good luck to ya,Rico

    • Christine August 3, 2012 at 2:21 pm #

      Rico, I am jealous! It sounds crazy, but I am. I’d give anything to be done w/ all of the meds, the pain, everything! My dr says I’m not “bad enough” to have the surgery, but if I could have it and be done, I would. I’m so glad you are feeling well now!!

  4. Catherine July 31, 2012 at 12:09 pm #

    My 19 year old daughter had the same problem with her hair. For her, Colazal wasn’t the probem. It was when she started 6mp that her hair started falling out. I cleaned up enough hair off her bedroom floor to stuff a pillow! She has been colon free for 6 months now, and off all medications, thank God!!

    • Christine August 3, 2012 at 2:25 pm #

      Catherine, it very well may be the 6MP…it’s so hard to tell, but my hair seemed to grow back after going off the Colazal. It’s possible that my hair was going thru a cycle after starting the 6MP. I’m so glad your daughter is doing well…I want to be colon-free, too!! :)

  5. Trina
    Trina August 1, 2012 at 7:45 am #

    I am currently on 6MP. And I’ve been on it since January of this year. And my hair has thinned dramatically ! I’m also a hairstylist of 11 years. Believe me when I say that losing you hair is a major emotional loss for me. I just now have started seeing the little sprouting of the new hair. But the ends of my hair are so brittle and thin. In the begging I tried “Bosley”. I started off with the daily vitamins. They didn’t seem to help much. Then after I finished those I switched to the actual “Bosley” formula that you put on your scalp to promote hair growth. It helped a little more. And now I’ve incorporated Biotin (again ). So I am currently doing both and it does seem to be helping. Just very slowly. Which is normal. I believe 100 percent it is the 6MP. But my doctor doesn’t agree. If you read the side effects of 6mp hair loss is one of them. All I can say us be thankful for the hair you do have.
    Also I did too have the burning in my belly button. Was so bad I couldn’t get out of bed for days. My doc gave me Prioosec and in about 5 days it was gone. So just stick with it. And try not to consume anything too acidic. Good luck. There is light at the end of the tunnel. And things will get better. Just try to have a positive attitude. Take it one day at a time. And expect a slow recovery. You have to give your body some time to put out that fire you have going on in your tummy.

    • Christine August 3, 2012 at 2:37 pm #

      Trina, thank you so so much for your response. I can’t believe you’ve experienced the same things as I have. As I’m reading the responses, it does seem that 6MP is the more likely culprit of my hair loss (rather than the Colazal). My dr. also didn’t seem to think it was the 6MP and was more quick to blame the Colazal. When I started to lose my hair the first time, I took Biotin and noticed some improvement. I’m going to start that again, and I will try “Bosley.” I’ve never heard of it, but I’ll find it!! I understand the huge emotional toll that hair loss takes on someone. I always had such thick hair, every hairstylist would comment on it, and I never had to worry about it. To see it dwindle to at least half the amount has been devastating.
      And 5 days must be the magic #! By day 5 or 6, the Prilosec started to help with the burning in my stomach. I’m still experiencing weird cramping, but at least the constant burning sensation is gone.
      Thanks again for your advice and supportive words. I really appreciate you taking the time to write. I hope you are feeling well and that those sprouts are growing!

  6. Steve August 1, 2012 at 11:59 am #

    Hi Christine…sadly I don’t have any advice I can offer but I wanted to say thank you for coming here and sharing your story. It takes courage and strength so thank you. To you and others like you who suffer even with medications and such, do you ever think of getting opinions of other doctors? I am curious.

    • Christine August 3, 2012 at 2:50 pm #

      Hi Steve…thanks for the kind words. I think getting a diagnosis like UC makes you lose some censors, so I’m willing to ask any question to get some help (and answer any question I can to help someone else because I know how bad it is!). To answer your question about 2nd opinions, I did get one just this past January. It was on the heels of my last (and worst flare), and I was incredibly frustrated with my gastro (who I actually like), but I felt like I was getting nowhere, going in circles, and with that latest flare, he was talking about moving up the treatment ladder from 6MP to Remicade (something I REALLY don’t want). So I did a little research and found out that MASS General Hospital in Boston is ranked #4 in the country in Gastroenterology. It was the best hospital within driving distance of where I live, so I went thru the process of enrolling to become a patient, made sure they took my insurance, and scheduled an appt. The dr was clealy very (very) educated and took her time with me. She reviewed all of the info from my dr., and asked a lot of questions. She said she thought that I was basically on the right track w/ my dr., BUT that she wouldn’t recommend Remicade at that time. While my dr at home was hesitant to increase my 6MP based on my body weight, she said I could easily increase it to 75mgs without an issue (she explained the calculations to me). While I hate being on any meds, I’d rather stay on my current drug. She wrote a letter to my dr, and when I met with him again, he agreed to increase the 6MP. While I’m losing my hair again and having other weird symptoms, I (KNOCK ON WOOD) have been flare-free since that increase in medication. I thought the 2nd opinion was definitely worth it…at least for some peace of mind and confirmation of what I had already been thinking~

  7. amy August 1, 2012 at 3:55 pm #

    I don’t have any answers or advice for you either. Just wanted to let you know I feel your pain. I have been on Asacol hd since my diagnosis and I am experiencing major hair thinning. It is almost more upsetting than the other stuff we go through. I started taking Biotin about 2 weeks ago..too soon to tell if it’s helping. btw …Prilosec is slow acting..it takes at least 3-4 days( i have been on it as long as the asacol hd) it does help but it takes a bit of time. Hope you find some relief soon!

    • Christine August 3, 2012 at 3:04 pm #

      Amy, I completely know what you mean about the hair loss almost being worse that the UC symptoms. It’s all a mess. While I’m grateful to not be currently in the midst of a flare (just the thought of having one gives me anxiety), to lose your hair is a horrible, emotional loss. It’s like we don’t have enough to deal with with the UC symptoms (which are WAY MORE than enough for anyone). The side effects and related issues of UC are unexpected and can be just as hard to deal with. Thankfully, I did find relief from the burning in my stomach after day 5 or 6 on Prilosec. Thank you for writing, and I hope we both turn the corner soon and start some serious hair-growing! :) Read the thread above, Trina had another recommendation (aside from Biotin). Best of luck to you!

  8. Meagan
    Meagan Tkachuk August 3, 2012 at 2:34 pm #

    I am going through the same thing! The hair loss is awful ! My hair used to be so thick and now its veeerry thing.. I am on Imuran, Remicade, Prilosec, Prednisone. It deffinately is awful ! I have recently been using a new shampoo and conditioner called Nioxin which is supposed to help thicken your hair, but I haven’t really noticed anything yet. ( Granted I’ve only used it for a few days). I have been on Prilosec for heartburn for almost 2 months now and it works awesome ! My heartburn symptoms have reduced dramatically !

    • Christine August 4, 2012 at 11:39 am #

      Hi Meagan…at least we’re not alone! This hair loss is awful and I can’t stop worrying about it. I’ll look into Nioxin (thanks for the suggestion!), and Trina (above) had a recommendation called the “Bosley” formula, which I’m also going to check out. The Prilosec did finally start to help on the 5th or 6th day, thank god. Thanks for writing and I hope you feel better ASAP~

  9. Breanna May 15, 2014 at 2:20 pm #

    I am in the process of my hair finally growing back now! I was in a bad flare up for about 9 months and took colozal 3 pills 3x a day, cortifoam, rowasa enema. My hair began falling out by the second month on that medication combination. I did not have bald spots however major thinning. I started biotin by the third month into my flare up and by then I began tapering off the cortifoam. It took about two-three months for biotin to really stop the hair loss. I am staying on biotin until my hair grows back completely. I also use a shampoo and conditioner called Viviscal.
    This combination has helped a great amount. Try 5000mg of biotin. Best Wishes.

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