So No Colon or a Chance of Cancer or Death? umm…

Meet Autumn:

I’m back! My name is Autumn and i just turned 19. This is my third post on here since I was diagnosed with Severe ulcerative colitis and spent 2 weeks in the hospital at age 17. I’m here once again seeking advice and opinions.

A Little More about me:

I love to bake, take walks, dance and am currently looking for a bakery job. or at least i will be when i get things under control. :P

Current Colitis Symptoms:

  • blood
  • pain
  • nausea
  • anemia
  • fatigue

Is It Really No Colon or Cancer In the Future?

Well about two months ago all my symptoms started coming back worse than ever before, because of this i had to get iron infusions and 2 blood transfusions and take off work because i was so anemic i kept almost passing out. Well turns out that the remicade that id been on was no longer working at all because my body had built antibodies to it. I talked to my doctor and now he has me starting a shot called humira (which I happen to be scared of needles. lol). Its a bit scary, it has 4 cancers in the lable alone. On top of that shot he wants me to start an oral medication called 6-mp. That has major side effects (also major nausea and hair loss) and is normally used to treat an acute cancer. basically its a very low dose of chemo.

Taking both of these medicines together is very frightening because it suppresses the immune system enough that a simple cold can easily turn into pneumonia.

But the more frightening reason is because in the humira warning it specifically says (and i quote)
“a rare type of cancer called hepatosplenic T-cell lymphoma (HSTLC) has been reported in patients using TNF blockers, including this medicine. These cases have been fatal. Most of these cases occured in teenagers or young adults and most of these patients had Crohn disease or Ulcerative Colitis. Patients who developed HSTLC were usually using medicine along with azathioprine or 6-mercaptopurine (6-MP)”

Scary Right?  I’d reach every requirement to get that cancer. So my questions are simple,

What do you think i should do? keep in mind its either this or surgery.

Is anyone else on humira? or 6-MP? or both?

How is it going?

I’d really appreciate anything you guys have to say. Any reply would be nice at this point. haha

Medications:

Remicade had always worked the best for me and had no side effects

written by Autumn

submitted in the colitis venting area

Tags: cancer





17 Responses to “So No Colon or a Chance of Cancer or Death? umm…”

  1. 20 year oldDecember 29, 2012 at 2:31 am #

    Surgery! I had it a few months ago and my life is so much better for it. I was worried about dating but I have a loving boyfriend of 6 months :-)
    Even if the drugs don’t cause those awful side effects, you still have an increased risk of colon cancer from the uc alone. It’s a tough choice to make, but it was definitely the right one for me. The side effects of the drugs are rare, but is it really something you want to risk?

  2. brittanyddg8December 29, 2012 at 4:18 am #

    I used to be on 6-mp before I started Remicade! I took 6-mp for about 10 years and the worst side effect I ever experienced was really thin hair. I never experienced nausea or anything. My GI doctor didn’t recommend taking 6-mp while on an immunosuppressant drug like Remicade (or Humira) due to that increased risk of developing cancer. So that’s something you should definitely talk to your GI doctor about! If I was faced with the decision to take 6-mp and Humira or get surgery, I’d probably opt for surgery! No more colon = no chance of ever developing colon cancer!

  3. Richele
    RicheleDecember 29, 2012 at 7:49 am #

    After many years of fighting my dr about taking meds, I finally decided to try 6mp. So far I have experienced nausea, vomiting, MORE fatigue and joint pain…didn’t think that was even possible…as well as hair loss. And it’s only been a few weeks on this medication. The risk of cancer is enough to make you want to stop taking it and all of the long term side effects are horrifying. Surgery is something I have considered from time to time, but I guess I’m not ready to give up on my colon yet. I’m scared…every day is a battle.

  4. HeatherDecember 29, 2012 at 8:06 am #

    Hey! I am 20 now and was in a very similar position to you. I was diagnosed at 18, just 2 days before christmas and was made to stay in the hospital for treatment. 2 weeks later they had to take my colon out with no real discussion to save my life … I was so angry and depressed at first. I hadnt even known this was an option they were thinking about (only been diagnosed 2 weeks and had been in the hospital without internet for the duration). In short, I thought my life was over. Now though is a different story … I am so thankful for my stoma I’m actually thiking about elective surgery to keep it forever!! I can RUN (yes you heard me right) without having an accident, I can eat everything without wanting to throw it up and I keep down a full time job in the holidays between a full time university course and extracurriculars. I’m not going to say every step was easy … healing is hard and there are things you need to get used to but 6 weeks after surgery you will not know yourself, you will be a different person. You dont get anemic as often, you have energy, there is considerably less pain and blood. I even have a regular sex life, just as any university student does! I have developed sneaky ways to conceal my stoma and so don’t tell a guy about it until after a few times when I know it could be serious. As for people understanding … pretty much everyone I have told thinks its the coolest thing ever and they are all very supportive and ask questions as they are curious, NOT repulsed. I hope this has helped … I know it seems like it now but there really is light at the end of the tunnel :)

  5. SteveDecember 29, 2012 at 8:25 am #

    I am in the same situation as you…Remicade didn’t work so I am on both 6mp and Humira. I have been on 6mp since 2004 and Humira I just started. It is scary looking at the side effects. Surgery is looking more and more attractive but it is a big decision. I guess I can’t offer any answes but for me it is nice to know I am not alone in this journey and maybe by reading this you can see you are not alone either (?).

  6. MasonDecember 29, 2012 at 9:39 am #

    Hey! Sorry your going through this. I had only 2 weeks of symptoms before I had to have my colon removed. So I can’t imagine living with it for so long. But the surgery was a breeze, just get a good surgeon….shop around! Lol. I don’t care for modern medicine myself too much, and humira is a scary one! I am currently waiting for my second J pouch surgery, but if you have any questions about surgery and a few months after it, I’m here for ya! Happy new year!

  7. joannaDecember 29, 2012 at 12:09 pm #

    hey autumn. i was on remicade and 6mp together and i didn’t get cancer. i think the chances of it happening are extremely low. i know A LOT of people on immunosuppressants with tnf inhibitors and none of them have gotten cancer. but i don’t wanna say it can’t happen. you just have to weigh your quality of life right now and whether you want it to stay that way or see if it can improve with meds. i will be starting humira soon and i hate needles, too. all the side effects scare the crap out of me. i am doing it because my mom is making me try it, but i really don’t want to take it at all.

  8. AutumnDecember 29, 2012 at 2:29 pm #

    Joanna, I know that it’s a very low change. I mean I was on remicade and prednisone before, but no one had mentioned that they were that much worse together. The fact that it has happened so much that they specifically had to put it in the label scares me to death. If you’d be so kind to tell me how it goes. That would be VERY much appreciated.

    Steve, It’s so nice to know that I’m not alone in this. I’ve been searching this site up and down for people who are on both medications and see what has been happening but I can’t find any help. I’m supposed to get the first 4 shots of Humira on the 2nd So I’ll definitely tell you how it goes. How have you been feeling so far btw?? Has it been going good or is it… well, hell? lol

    Richele, your case sounds very rough. I’m sorry that all this had to happen to anyone, but if I were you I’d really get the surgery. I mean, you’re on some of the strongest meds and they are making you feel worse than when you started. I think it would probably make you more happy if you went through with that big decision to get the surgery. :)

    Heather, you make it sound so wonderful!! At the moment I can’t even go to work (actually I’m under the impression I might have gotten fired since my whole passout incident at work, because they haven’t called in a month), I am ALWAYS nausous. I haven’t started throwing everything up yet but it’s coming soon, it’s pretty easy to feel. And the whole exercise thing is really nearly impossible right now. I move and I’m in horrible pain. I feel pretty useless actually. haha

    Mason, I may have some questions about the surgery and the after affects mostly. So PLEASE stick around haha.

    As for everyone else, Thank you SO MUCH for your replys!!! They are so helpful, you have no idea. I’m opting for the surgery at the moment. All of you guys really did put it into perspective for me. My doctor won’t let me talk to the surgeon about it until everything is under control though (which seeing as it’s been over a year with no remission, I’m a little aggravated at not knowing when that will be). So he’ll have me starting Humira on the 2nd until I get better and then I get to go talk to the surgeon. He thinks I’ll make a rash decision if I’m still in a flare and in pain. But what he calls rash, I call logical. I know that I’m afraid of surgery, the pain is just a reminder of why I should get it. Once it’s gone, I’m a little scared I’ll chicken out of that too. (sigh).

  9. bevDecember 29, 2012 at 3:40 pm #

    Autumn…I say DON’T go on those drugs. They will stop working eventually too, from all the info that I’ve read. I think all the drugs fail because this is not how to traet this condition that we have. I believe that we have to ‘manage’ it with things like diet, probiotics, L-glutamine, various NATURAL anti inflammatories like vitamind D and astaxanthin…

    Why the doctors keep prescribing these immune suppressors for UC is beyond me, especially when the results are never good for very long. I am so very tired of hearing about these meds being used on us…we do not ahve cancer…yet, anyway. These drugs all seem to eventually stop working…I wonder why…if that is true, then why bother putting them into our bodies at all??? What percent of people do they actually work LONG TERM for? Zero percent???

    We have to start thinking about the short and long term side effects of these drugs. They make us feel sicker and they are DANGEROUS.

    Enough said. If I’ve offened anyone, that is not my intent. I am just being a realist…

    Cheers

  10. evaDecember 29, 2012 at 4:59 pm #

    Hi
    May daughter like you ended up in hospital for 2 weeks with the “mother ” of all flares. She lost 20 lb. She also was given two choices, go on Imuran and Humira as the prednisone was not working anymore, or have her bowels removed. She had the same and still does fears you do.
    Fortunately I was able to get hold of a person who worked with her almost daily while in the hospital and as needed after she was released, on dealing with emotions and directing energy to healing as we all know now that there is a brain -gut connection.
    While in hospital I started her on a strictly broth diet, no other foods as the hospital food was making her worse and they pushed the “boost” or “ensure” which is full of sugars and additives which also made her sicker. In hospital they started her on the Imuran and gave her one shot of Humira. Two days after release I had her at a Dr. of nutrition specializing in digestive disorders. She gave her a regime of supplements to help heal the colon and to boost her immune system. She stopped the Humira and never continued. Within a month she weaned herself off the Prednisone and Imuran. She follows the SCD to the letter. Nothing goes into her mouth that either she or I do not make from scratch. She does visualization and meditation daily, She uses the EFT (emotional freedom technique) and a short five Tibetan yoga ritual daily
    We also looked into finding a Dr. who would prescribe LDN but so far it is not needed.

    It has been 6 weeks now and she is gaining weight again her colour has come back and her energy level is improving more and more. She is off all drugs. We are giving this diet a chance as we can always go back to the drugs or the surgery idea.

    • bevDecember 29, 2012 at 5:43 pm #

      Eva…this is what I’m talking about! We have to heal ourselves…NATURALLY!! Drugs are a band aid and do not work in the long term.

      As hard as it is to hear, or admit…the ball is in our court. WE have to MANAGE our UC, in whatever form we have it.

      Cheers, and I am SO happy for you and your daughter. Good on you!

  11. AutumnDecember 29, 2012 at 6:15 pm #

    Eva, I’m so sorry that your daughter got sick. :(
    It’s the worst thing. Although I’m VERY happy that she is ok now :) I hope that it works long term, I really do. :) I’ve been trying to find all the information possible on that but so far not much that I can afford seeing as I haven’t been working. I’m going to definitely do it when I get money for groceries though. Thank you. :) What exactly is EFT?

    Bev, I value your opinion. But at the moment, it’s either I get this under control QUICKLY or if i do nothing, I will bleed to death. I have to go in for blood transfusions to frequently to take a month or more to try and heal naturally. If I get this under control I would love to try that afterwards, but until then, please stop yelling at peoples posts about how this whole medicine thing is worthless.

    And if changing your diet and vitamin intake would work for all people I’m fairly certain they wouldn’t call it a disease. Just maybe, MAYBE that doesn’t work on everyone. But I’m really happy you got your disease in control this way too. Don’t change anything if it works. :) Take care.

    • bevDecember 29, 2012 at 10:57 pm #

      So true Autmn…we are all so different. I know about almost bleeding to death…I was so anemic a few times, and I had to have those good old iron infusions.

      I only wish everyone could heal themselves naturally, but each of our degree of ‘disease’ is different from anyone else’s.

      Like I said…I meen no offense to anyone. I just hate hate hate to hear about people on these drugs. Hate it…

      I’m so sorry that you have to be there at this moment.

      Best of health:)

    • evaDecember 30, 2012 at 10:02 am #

      Hi Autumn

      EFT is called emotional freedom technique ( perhaps google or find on you tube) It uses a simple tapping technique on acupressure points to relieve physical or emotional pain or blocks. It is easily learned and can be adapted to any kind of pain or discomfort. It is used by therapists to relieve post traumatic stress.

      Have you altered your eating regime according to the SCD to help your colon heal? As that can be done along with the transfusions and the drugs. Lots of info free on the internet to help you find out what the theory of this specific carb diet is.
      All the best Eva

  12. shelly in maineDecember 29, 2012 at 7:26 pm #

    Autumn
    No matter what you decide…read everything about the potential side effects..for patient and physician lists. Adam recently posted some updated info on humira as well.
    I also did well on remicade and then became allergic…they don’t want to blame the meds so you have to be aware of everything. Plus, the humra is self administered at home. Have you been back on prednisone to help get things back under control before taking the leap to those other meds? Oh, I was on 6 MP first and was allergic-being masked by prednisone. Also allergic to humira after allergy to remicade…just so you know.
    Hang in there, Shelly

  13. KyleDecember 29, 2012 at 9:33 pm #

    Autumn,

    My name is Kyle and I am 20 years old. I was diagnosed with severe UC when I was 18 and things only got worse. I kept putting off surgery and relied on prednisone for over 2 years now, but 2 weeks ago I had the first of my two surgeries for the j pouch reconstruction and I am happier than ever. After being off of medication just for this short time I feel better mentally and physically. Also, my doctor said that my colon was developing into a precancerous stage, so the correct choice was definitely made. I would hate for anyone to put off surgery and end up in a more life threatening situation just because they are hesitant or afraid. Believe me I was totally against surgery at first, but depending on your progress with medication treatment, when push comes to shove, your overall health must come first. I wish I had the operation sooner, but everyone including yourself has a different outlook on it. My advice to you is to talk with your doctor about surgery because I am very happy that I had it done and can now say that I no longer have ulcerative colitis. I wish you the very same, and best of luck with getting well.

    -Kyle

  14. SandraJanuary 2, 2013 at 7:41 pm #

    Hi Autumn my name is sandra. I was diagnosed in 2008 but had no major problems til I got pregnant on my 2nd child who was born in june 2011. Since then I have been on every medication you can think of and none of it has worked. Dont be afraid of the humira. I was terrified about the injection itself never mind the side effects. it is nowhere near as bad as you imagine. Suppositories, enemas,imuran,6mercaptopurine,humira,prednisone and infliximab (remicade) none have worked. Im due my 3rd infliximab infusion on d 9th but I am thinking about refusing and demanding surgery as this is my only option. But you know everyone is different and what doesnt work for one person might work for another so hang in there try them all and then go from there. Me deciding on surgery is a no brainer as I want to be able to do things with my 2 kids. Go places, do the weekly food shopping. All the things I used to take for granted. Ive been completely housebound since early august bar going to hospital appointments which I always have accidents on the way. I hope all goes well for you. Keep the chin up. Muchh love from one UC sufferer to another :)

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