It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Crohn's Disease / Ulcerative Colitis Message Board

  • Ulcerative Colitis + Colon Cancer...

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 06-24-2007, 06:14 PM   #31
    Steven94598
    Junior Member
    (male)
     
    Steven94598's Avatar
     
    Join Date: Apr 2007
    Location: Walnut Creek, CA, USA
    Posts: 17
    Steven94598 HB User
    Re: Ulcerative Colitis + Colon Cancer...

    Hey All!

    Wanted to post a brief update. Unfortunately, last week turned out a lot worse than I had expected.

    As I last posted, Monday afternoon after my first day of treatment wasn't too bad. Tuesday, however, I got knocked on my proverbial butt. Shortly after my treatment on Tuesday, the Decadron (steroid) must have worn off from Monday. I had never felt such extreme exhaustion. Once I crawled into bed, I didn't get back out for the rest of the week except for bathroom trips and to drag my butt to my Wednesday appointment. At one point, I was so weak that I spent 15 minutes praying for my water glass to levitate over to me because I was too tired to lift my arm to the nightstand 18 inches away (it didn't and I did without). I didn't start to regain my energy until Friday afternoon.

    The other thing that was a real problem was the shooting mouth pains from nearly anything that I put in my mouth. It got to the point where I didn't drink enough and probably felt a lot worse due to dehydration. Again, the mouth problems started to subside on Friday, but my first real meal was Saturday afternoon...in the Emergency Room...

    I woke up on Friday morning with what I thought was a muscle spasm in my neck. I spent the day nursing it with heating pads and muscle relaxants. Nothing worked, however. Saturday, I woke up and my neck was swollen. After dragging myself to the urgent care clinic, they took one look at my neck and sent me to the ER. After 9 hours of tests (and lots of waiting), they determined that I had developed five blood clots. They almost ripped out my port and admitted me. Once they determined that there was no clotting in my lungs and that my port still worked, however, they started me on blood-thinners (Lovenox self-injection and Coumadin oral) and sent me home with my existing port. The pain from these clots is unbelievable. They say the pain will start to subside in a couple days and that the body will dissolve the clots over the coming weeks/months. The good news of all this is that we caught the clots very early.

    Unfortunately, this past week has had a profound effect on my outlook. For starters, the early treatments are supposed to be the easy ones. Seeing how the first cycle affected me so severly has me terrified of the upcoming 11.

    Also, being an engineer, I'm having a real problem dealing with the statistics of what has happened. Given the odds of each of the things that HAS happened to me (i.e., less than 1% of population has Ulcerative Colitis, less than 15% of UC patients develop cancer, less than 2% of chemo patients develop blood clots), my 83% chance of survival doesn't look all that great to me anymore. I'm already the loser of 1/33,333 odds. Yeah, I know, there are flaws with my math/logic and you can argue the statistics, but this is what is going through my head. I wish I weren't so darn analytical.

    For now, I'm trying to stay in my Vicodin-induced happy place. If I make it out the other end of this ordeal, I'll probably end-up in rehab now that they've taught me everything I need to know about being an addict (first, the wonders of Vicodin...now, the ER taught me how to shoot-up). If only Vicodin worked as well as Dilaudid or morphine...

    Thanks to all of you for your support and thanks for letting me vent. I know that my outlook will improve once the pain in my neck (literally) subsides.

    -- Steven

     
    Sponsors Lightbulb
       
    Old 06-26-2007, 01:34 PM   #32
    backslide05
    Veteran
    (female)
     
    backslide05's Avatar
     
    Join Date: Apr 2006
    Location: san diego ca
    Posts: 460
    backslide05 HB User
    Re: Ulcerative Colitis + Colon Cancer...

    Steven,
    So sorry to hear about your first chemo being such a horrible and scary ordeal. I can imagine how you must feel and hoping that you are doing better and that your odds will now shift to be in your favor. I know nothing stays one way all the time so it's time for some good things to be happening I would think.
    My husband is going in next week for his first chemo treatment and I think similar to yours. Folfox 5 or 6? I'm very nervous about it and mostly concerned with the drug oxiliplatin which has the most severe side effects especially the neuropathy. Have you had a problem with that much? Cold sensitivity? I know it's early on with you but I was just wondering.

    I hope you can "adjust" if that's possible to the onslaught and keep up the fight. My prayers to you and all that are struggling with this awful disease.
    take care

     
    Old 06-27-2007, 05:02 AM   #33
    Heidi'sMom
    Inactive
    (female)
     
    Join Date: Apr 2007
    Location: Monclova, OH USA
    Posts: 125
    Heidi'sMom HB User
    Re: Ulcerative Colitis + Colon Cancer...

    Wow, Steven, I'm sorry to hear that your first treatment went so badly. I was on FOLFOX6 and my most severe side effect was diarrhea and severe cramping. Neuropathy didn't really hit me until the last treatment.

    I finished my course of FOLFOX6 2 weeks ago, went for my scan last week. The two tumors have shrunk a lot (largest was 3.6 cm and now down to 1.4). My doctor was extremely pleased, but I was mad. So...now I am on Xeloda. The upside is that Xeloda does not contain oxaliplatin. I take 5 pills per day (2 in the morning and 3 in the evening). Hopefully, this will take care of the remainder of the two tumors in my liver. I am a candidate for liver resection, too, but praying that won't be necessary.

    Cancer is a hideous disease. Maybe they will find a cure while we are all suffering through our chemo treatments.

    I'll be praying that your next treatment goes MUCH better than the first.

    Pam

     
    Old 06-29-2007, 11:23 AM   #34
    Jonna086
    Newbie
    (female)
     
    Jonna086's Avatar
     
    Join Date: Oct 2005
    Posts: 8
    Jonna086 HB User
    Question Re: Ulcerative Colitis + Colon Cancer...

    Steven, first I want to tell you that I'm so sorry for what you are going through! I hope this treatment is over quick for you and that you have a speedy recovery.

    I was hoping to ask you a question or two about the UC. I'd say you won't feel like answering them for a while though.

    I have a daughter that was diagnosed with UC last year in October. She will be 15 in July. Right now she is doing well taking Asacol. She was initially on Sulfasalazine but had a flare-up after only two months and had her meds changed then to the Asacol.

    Were you taking any medicine for your UC when you were diagnosed? Did you go through long periods of remission the past few years? What about colonoscopies? Did you have them yearly?

    I understand if you can't answer these questions. I know you are feeling really rough right now. My brother-in-law is being treated for tonsil cancer right now. After seeing him go through his chemo (2nd one today) and radiation, I have a LOT of respect for people suffering with cancer!

    Take care and I hope to see a positive post from you soon!

    Jonna

     
    Old 06-29-2007, 03:07 PM   #35
    Steven94598
    Junior Member
    (male)
     
    Steven94598's Avatar
     
    Join Date: Apr 2007
    Location: Walnut Creek, CA, USA
    Posts: 17
    Steven94598 HB User
    Re: Ulcerative Colitis + Colon Cancer...

    All:

    The pain from my clots has diminished tremendously. My first set of blood tests after starting the Lovenox and Coumadin, however, revealed that I was probably on too much. Now we're waiting for my blood to rebound so I can clot again before they start me up on them again. Otherwise, my blood counts were good enough that I'm stuck starting Chemo Round 2 on Monday. (sigh)

    For now, I am so looking forward to a relatively normal weekend with my partner. We're going out for dinner with a friend on Saturday night and going to a barbecue on Sunday (after a quick blood test at the hospital in the morning). Thanks for all your support.

    Backslide:

    I think I mentioned my primary side-effects from my first round of chemo a few posts up. For my first cycle, however, I didn't have major problems with any neuropathy. I had some minor tingling in my fingers and it did feel weird (but not painful) to reach in the refrigerator. From what I heard in my cancer group, it does get painful AND the more you experience the pain (e.g., ignoring recommendations and reaching in the fridge) the more likely that the effects will be permanent rather than transient. This week, I got ready for Round 2 by running out to REI to buy some gloves. I found some with rubber dots (Manzella max-10d for men or maxw-10d for women) since people say that you drop a lot of things due to the numbness/tingling. I'm hoping the rubber dots will help me keep a grip.

    JonnaLeigh:

    I am so sorry to hear about your daughter's diagnosis. It is so unfortunate that UC and Crohn's usually emerge in the teen years when life is already so complicated. I was 17 or 18.

    By the time I got a diagnosis of Inflammatory Bowel Disease (i.e., the general category containing Ulcerative Colitis and Crohn's), I had been sick for quite sometime. After losing 20-30 pounds, passing a lot of blood and spending my entire life in the bathroom for those months, I got admitted to the hospital in pretty bad shape. They started me on steroids at that point which were miraculous in turning me around. After getting me out of crisis mode, they started weaning me off the steroids and tried a variety of other drugs (sulfasalazine, pentasa, rowasa enemas and ultimately Asacol). [NOTE: Based on my knowledge, all these drugs are very related. The active ingredient of these is the 5-ASA molecule which is an anti-inflammatory. Otherwise, the only difference between these is the means of delivery which affects where the active ingredient gets released.] Unfortunately, I was pretty much steroid-dependant. Everytime they'd get me below 5mg of Prednisone, I'd flare-up again. It wasn't until I finished my graduate degree that I finally got things under control and was able to get off the steroids. I think the stress of my undergraduate and graduate programs (tied with a bit of Type-A perfectionism) definitely aggrevated things.

    Also note that they've had a very hard time figuring out whether I have Ulcerative Colitis or Crohn's. In fact, for >10 years, they thought it was Crohn's. They just changed my diagnosis (back) to Ulcerative Colitis when I got the cancer diagnosis.

    After finishing school, my disease was pretty much under control. I've always had very loose bowel movements, but we've now learned that this was primarily caused by a non-functioning ileocecal valve that is supposed to gate how quickly stuff flows from the small intestine to the large intestine. Mine was stuck open, so the large intestine got flooded with too much stuff to process.

    Otherwise, here are my thoughts based on my own experiences:
    1. Diet is important. Some foods make matters worse...others are relatively benign. Your daughter will have to figure out which foods don't work so well for her and stay away from them. When I had more inflammation, some foods moved from the OK column to the Avoid column (e.g., raw fruits/vegetables). Other foods are on my permanent avoid list (e.g., nuts, seeds, popcorn etc. since these have proven VERY dangerous for me as they can get stuck in ulcers and cause major problems.

    2. There are many different types of drug therapies (e.g., anti-inflammatories, immunosuppressants etc.) that work for different people. Many of these drugs take weeks to start working. Your daughter will have to be religious about taking her medicine (even if she doesn't think it is working) and give each medicine a chance to start working. If it still doesn't help her, ask about other options. For me, the little pebbles in the Pentasa capsules went right through me. I seemed to absorb the Asacol better. My little cousin takes Imuran for his. They also have amazing new drugs available (e.g., Remicaide) that weren't available for me.

    3. While steroids work very well in a crisis, long-term use causes all sorts of problems. I'm a 38 year-old male with osteoporosis due to long-term steroid use.

    4. Colonoscopies are a pain in the butt (I couldn't resist), but a necessary evil. After I started to do well, I kept putting off my colonoscopy since I tended to have flare-ups after colonoscopies. Ultimately, it was 10 years before my last colonoscopy...which revealed Stage III cancer. If I were consistent with my colonoscopies, they would have found this much earlier (e.g., Stage I/II) and I wouldn't be going through chemotherapy right now. It is interesting to note that they never used to put me under for a colonoscopy and they were truly horrific experiences. My current Gastro-MD, however, put me completely out for my colonoscopy such that the liquid/laxative prep was the worst part. I don't see why all doctors don't make it easy on the patient. Ultimately, I should have gone every 2 years while I was in remission.

    5. Your daughter should try to meet some other people her own age with IBD. It is very isolating to be a teenager and deal with a "bathroom disease" that other people (especially teenagers) don't understand. The Crohn's & Colitis Foundation of America (CCFA) has lots of information and opportunities specifically geared for teens (e.g., Gut Camp).

    6. It is very reassuring to keep mini-rolls of toilet paper/moist towelettes stashed wherever they might be needed (e.g., glovebox of each car, school backpack, purse etc.) since public restrooms are rarely well maintained.

    Definitely let your daughter know that it is VERY possible to have long stretches (e.g., years) of relatively symptom free remission and that she'll still be able to live a normal life.

    Let me know if you have any other questions about my own experience.

    Best regards,

    -- Steven

    Last edited by Steven94598; 06-29-2007 at 03:17 PM.

     
    Old 06-30-2007, 09:59 AM   #36
    crohnie
    Junior Member
    (female)
     
    crohnie's Avatar
     
    Join Date: Apr 2007
    Location: MA
    Posts: 42
    crohnie HB User
    Re: Ulcerative Colitis + Colon Cancer...

    Jonna

    I have been on Asacol for many many years for my Crohns. It is now the only med that i can tolerate well. Look into Remicade and Humira if she continues to flare. They are a god-send

    Good Luck

    Michele

     
    Old 10-30-2007, 04:00 PM   #37
    Nassau one
    Senior Veteran
    (female)
     
    Nassau one's Avatar
     
    Join Date: Jun 2003
    Location: London UK
    Posts: 1,301
    Nassau one HB UserNassau one HB UserNassau one HB UserNassau one HB User
    Re: Ulcerative Colitis + Colon Cancer...

    Wow Steven, what a time you have had. It seems that nearly anything that could have gone wrong did, but your post was so inspiring and shows your courage and determination. I do hope you complete the remaining three cycles without any problems. All the best!

    Alison

     
    Old 10-30-2007, 09:04 PM   #38
    Heidi'sMom
    Inactive
    (female)
     
    Join Date: Apr 2007
    Location: Monclova, OH USA
    Posts: 125
    Heidi'sMom HB User
    Re: Ulcerative Colitis + Colon Cancer...

    Steven, it is so good to hear from you. I was just thinking about you a few days ago and wondered how you were doing. You have certainly been through it with your chemo treatment, but you're almost done climbing that hill. Way to go!

    It's funny the things a life-threatening illness make you aware of and appreciate. As an example, fall is my favorite season of the entire year. Last year I was in the hospital from Sept. 7 until Nov. 6th with not even a view out my hospital window. This year I just stand outside letting the sun shine on my face, listening to the birds, enjoying the color of leaves and even listening to them fall. The corn and beans ae harvested ,pumpkins are all aound, and we're on our second jug of cider. We sure don't take any day that we are alive for granted, do we.

    Anyhow, good to hear from you. I' sorry you have had akk if these complications, but you're almost there. Hip hip hoorah!

    Pam

     
    Old 11-01-2007, 09:26 AM   #39
    ash0479
    Senior Member
    (male)
     
    ash0479's Avatar
     
    Join Date: Sep 2006
    Posts: 163
    ash0479 HB User
    Re: Ulcerative Colitis + Colon Cancer...

    Steven....

    Hang in there my man, you are truly an inspiration to everyone...You are strong!!

    God bless!!

     
    Old 11-01-2007, 11:19 AM   #40
    backslide05
    Veteran
    (female)
     
    backslide05's Avatar
     
    Join Date: Apr 2006
    Location: san diego ca
    Posts: 460
    backslide05 HB User
    Re: Ulcerative Colitis + Colon Cancer...

    Steven,

    I was glad to read your post. You and my husband are sharing very similar stories and the same treatment and schedule. He has just finished #9 also and has his pump removed today. He also suffered blood clots and was in the hospital for a week. He's on blood thinners and wears that stocking. Other than that, and fatigue, he isn't doing too bad.

    That's interesting that you've already had scans? He won't have them till he's done with treatment. That's very encouraging and good news to have those excellent results --even though you've been through the wringer it looks all very promising for you.

    I wish you well, and it looks like a Merry Christmas for both our families!

     
    Old 11-02-2007, 04:39 AM   #41
    brook65
    Senior Veteran
    (female)
     
    brook65's Avatar
     
    Join Date: May 2006
    Location: kent
    Posts: 1,434
    brook65 HB User
    Re: Ulcerative Colitis + Colon Cancer...

    Hi Steven, I have just got through this long post, and was drawn to it as my partner has ulcerative colitis, and we thought he had colon cancer last year.

    When I started to read this thread I was really worried for you, but then got to the end and realised that it seems you may just of beaten it.

    I am really pleased and happy for you, you should be really proud of yourself for keeping going.

    Best of luck to you

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    Ulcerative Colitis? Chrohns? JESSIECOLA Crohn's Disease / Ulcerative Colitis 1 03-15-2011 09:48 PM
    How can I treat my ulcerative colitis? lifeisg00d Crohn's Disease / Ulcerative Colitis 1 12-04-2009 09:05 PM
    Ulcerative Colitis/Proctitis, autoimmunity, and surgery MachOneMustang Crohn's Disease / Ulcerative Colitis 8 09-08-2008 08:45 PM
    Colitis, but not ulcerative colitis? debbiebee Crohn's Disease / Ulcerative Colitis 29 07-31-2008 05:20 AM
    Ulcerative colitis and crohn's disease marypar Crohn's Disease / Ulcerative Colitis 12 04-16-2008 06:59 PM
    ulcerative colitis? ImASadGirl22 Crohn's Disease / Ulcerative Colitis 9 01-25-2005 09:02 AM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 12:11 PM.





    © 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!