CANCER! How did it come so fast?

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UC since'76
Regular Member


Date Joined Dec 2006
Total Posts : 77
   Posted 7/1/2009 8:06 AM (GMT -6)   
I have had UC for 33 years. It started with just some odd cramping for two nights in the middle of the night right after my wedding in 1975. At some point it became pancolitis. It was always pretty mild. Mostly, it was urgency.
 
I had my first flare after having UC for 30 years. I was in the hospital being treated for bronchitis. I did not have a personal physician. They just assigned a doctor. He must not have known a lot about UC because he started ne on magnesium pills that I was to continue at home. When I took the first pill, my colon sprang to life. I had a formed stool with no blood. Over the next daysI deteriorated into my first flare. I was hospitalized, treated with solu-medrol and was OK.
 
Had my every two years colonoscopy March 2008. It showed remission and normal biopsies.
 
There are only two hospitals in this town. My insurance only lets me use one of them. Last March they sent me a letter saying they were in negotiations and I might not be able to use that hospital either. This upset me and I started bleeding. They sent me a list of new places to get medical care. They were all small clinics in small outlying towns. Most of them did not even have a GI. For $707.00 a month, I was going to have to get in the car, drive away from the city to a little hick town to get medical care!
 
In March I went to the ER and was a little anemic. They said "Oh, you are only a LITTLE anemic," and sent me home. They did not do anything...and I HAD CANCER!
 
In April I was having pain. I went to the ER. They gave me about a dozen prednisone tablets and sent me home...and I HAD CANCER!
 
Two days later I came back and insisted on being admitted. I did not want to see my old GI. He had gotten angry and upset me terribly when my insurance changed and I could not afford Asacol. So my personal physician called in a GI from a new group. He never showed and he was supposed to be my new forever GI. Maybe he did not understand this because my personal physician does not speak English very well.
 
Another doctor from the new group came into my room and immediately started backing towards the door. I was frantically trying to ask questions. After five minutes, tops, he said in a slightly loud voice "I've got to GO." and he left. Some woman came in (their nurse?)  and said she had seen my Cat scan and all it showed was a little irritation, not inflammation and so no colonoscopy. A young doctor from the group came in and all he wanted to talk about was my Xanax.  He said I would not get that if I came to his clinic because he didn't mess with that junk.They were not going to do anything so my personal physician sent me home...AND I HAD CANCER!
 
While in the hospital, I told everyone who came into my room that it felt like I had four hot charcoal briquettes just inside of me. All I got were blank looks. One little nurse had never even heard of Ulcerative Colitis.
 
So I made an appointment at Vanderbilt in Nashville about a two hour drive. I had to wait two months to get in. I had a colonoscopy day before yesterday. The doctor showed me pictures when I woke up. I HAD CANCER!
 
How did it grow so fast? I was always told if you had your colonoscopies, if they ever found cancer it would be small and they would take out your colon and you would be alright. But this thing is big. And I have been having strange weakness and shortness of breath for a few months.  I can barely make it to the mailbox and back. I am bleeding and have to take one or two pain pills every day. Yet it was not even time for my next colonoscopy (March 2010) and my last one showed remission.
 
I kept trying to tell people I was having symptoms but they just kept brushing me off. This thing was smaller in March. That could have been a matter of life and death for me. And what about the CT scan. Did they not see it? Was it even there in April?
 
Today, the surgeons office is supposed to call to make me an appointment. Surely they won't make me wait for months with cancer?  I just want this thing out but the GI says they may want to do other things first like radiation and chemo.
 
I have not slept . The GI called last night with the bad news. I don't think I will ever sleep again. I am actually having hallucinations right now. That happens when I don't sleep. The firplace logs are pink and green and jumping up and down. I was having hallucinations in the hospital in April because no one ordered me anything for sleep and I was up for three days. I told the young doctor about  it and he asked if I had ever seen a psychiatrist!
 
The whole time my grown daughter was deciding to move to San Diego immediately instead of next year. She dropped out of nursing school and moved June 9. She has a new husband she hardly knows that she got off the Internet. He is getting out of the Navy next week. She does not know about the cancer. I need her so bad. I am going to have to cope alone with a new ileostomy
 and all the bags plus chemo plus terror and having to travel two hours each way.
 
I live with my son and a sick cat. I can't ask my son to help me with the bag. He is already having to take off work to drive me. He has heart trouble and headaches. I saw him crying last night after he got the news.
 
I may not have long to live. I may not be here for Christmas. I will not know the stage of cancer for a long time. It will be after the surgery and any chemo or radiation they do. I am used to being here. I do not want to be dead. My son and my cat look a little strange to me. I think I already miss them.
 
This post is too long. I am sorry. But you and my son are all I have and I needed to write this.
Ulcerative Colitis since about 1976
Pan colitis since at least 1994
 
 
No meds. 
 
 


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 7/1/2009 8:12 AM (GMT -6)   
I really cant say anything other than I am so sorry you are going through this
26 year old female
Diagnosed with unspecified UC 11/08 by flex. sig. as I was pregnant at the time and did not want to be put under for a colonoscopy
Breastfeeding my baby boy (born 4/8/09)
20 mg Prednisone AM, 15 mg PM (tapering from 60mg a day)
Started Remicade 6/11/09
Was on Asacol (2400mg or 3600mg a day) for 6 months with no success


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 7/1/2009 8:18 AM (GMT -6)   
So, sorry to hear that. If you really wanna make all those people that blew you off sweat, you take that diagnosis into their office and just say you'll be hearing from me.

Vandy's IBD clinic is great. I have been using them for 2 years now.
Proctitis DX 1999, Pancolitis DX 2008
Golimumab study (100mg every 4 weeks)
L-Glutamine 5000 mg + 600 mg pyridoxal alpha-ketoglutarate
Probiotis/VitD3 5000IU+Ca/1000mg DHA


Zippy123
Veteran Member


Date Joined Feb 2009
Total Posts : 735
   Posted 7/1/2009 8:26 AM (GMT -6)   
Another case of arrogant doctors think they know everything. They maybe just need to operate, remove that bad section, and you be alright.

UC since'76
Regular Member


Date Joined Dec 2006
Total Posts : 77
   Posted 7/1/2009 8:27 AM (GMT -6)   
I would really like to but what if I had some kind of bad episode sometime and could not make it to Nashville. I would have to go to this ER and they are the only people I can see.

I hate living in a smaller town and having my doctor 2 hours away but they tell me a lot of people come from far away. I wish I could talk to some and see how they manage.

Do you have a long travel to Vanderbilt?
Ulcerative Colitis since about 1976
Pan colitis since at least 1994
 
 
No meds. 
 
 


UC since'76
Regular Member


Date Joined Dec 2006
Total Posts : 77
   Posted 7/1/2009 8:29 AM (GMT -6)   
Zippy 123

Thank you.

I already know that they are going to take out my whole colon and rectum.
Ulcerative Colitis since about 1976
Pan colitis since at least 1994
 
 
No meds. 
 
 


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16285
   Posted 7/1/2009 8:33 AM (GMT -6)   
That is a crazy situation and I am sorry you have gotten pushed around so much. I think we know when something is wrong with our bodies and I am sick of getting brushed off by doctors when I explain that I don't feel right. When I was flaring really badly a few months ago, I was very anemic and for people say say "you're a little anemic" and send you off without treating you, is awful! I was terribly sick, out of breath and barely able to walk across the house without feeling winded and drained.
 
I am amazed that this has happened to you in such a short time. I am sorry. I think you need your daughter. I know it is hard to open up and even harder to ask people to change their lives for you but sometimes you have to. You should do something to show the people who blew you off how wrong they were. As doctors, it is their job to listen to their patients and do whatever necessary to set their minds at ease. Have you gotten a second opinion? I think it is always a good idea to have as many options open as possible. Having a bag isn't the worst thing in the world. I've seen a lot of people with UC thankful to have a bag over the disease. You will beat this. Try to think positive. You can get free drugs from the manufacturers if you're unable to pay for them, there are usually ways to beat the system if you search for them. Please let me know if there is anything I can do to help.
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa + Probiotics + Iron - So far so good!!! -SPOKE TOO SOON! Back to 9/day...


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 7/1/2009 8:53 AM (GMT -6)   
Oh wow..........I am so sorry to hear about everything you've been thru! That is just horrible how they treated you and I get so angry when I hear people's stories about how the medical system has failed them due to ignorance. If the cancer has not spread and has been contained in the colon, having it taken out should take care of the problem (maybe along with chemo/radiation). If it has been contained you may very well live for a long time. Having cancer doesn't always mean a death sentence - sure it is extremely serious and it has the POTENTIAL of taking a life but with the proper care, one can continue to lead a normal and healthy life. Hang in there and come talk to us anytime you want - we are here for you.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate ALL mesalamines**~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-had 2 series of 3, OA-Celebrex, Tylonel Arthritis and Voltaren Gel
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suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 7/1/2009 8:54 AM (GMT -6)   
There are lots of colon cancer survivors out there and hopefully you will be another one of them. Colon cancer is very curable if found in time. It's also a very slow growing cancer. I think your story points out the need for everyone to be vigilant with their care. We are all at increased risk of colon cancer after having UC for 10 years. I know UC patients who once hit 20years had their colons removed for preventative measures. Some would find that unnecessary but others wouldn't want to take the risk. I wish you well for your upcoming surgery and urge you to connect with other colon cancer survivors.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 7/1/2009 8:56 AM (GMT -6)   
Wow. I'm not sure where you are located; is there another larger city where there is a good hospital that takes your insurance? I know it might be a drive for you, but you also might get some good help. The might even have patient assistance. What state do you live in? Can they help? Some of the big teaching hospitals might be able to help too. Remember, some times we need to be our own advocate. Okay, not sometimes, ALL of the time! I think this is a good reminder for all of us to remember...."don't let anyone silence your voice," as stated by a very wonderful doctor. Take care, and let us know how things are going....and if there is any way we can help.

Carol

Remicade - will have my 29th infusion on July 8
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


TLB37
Regular Member


Date Joined Dec 2008
Total Posts : 79
   Posted 7/1/2009 8:58 AM (GMT -6)   
I'm so sorry this is happing to you . Try to stay strong and positive i will be praying for you and your family. I can't believe the doctors did you this way. O they would be hearing from me if i were you !!
    Female 37
 
   20 years of Ulcerative Colitis
 
  meds,  2 Lialda, 3 Azathioprine, 1 Celebrex, Cymbalta, Mirtazapine,
               TLB ( :


hana24
Regular Member


Date Joined Dec 2007
Total Posts : 354
   Posted 7/1/2009 9:20 AM (GMT -6)   
You are in my thoughts - I am so sorry for everything you are going through.
Jessica 27/F
Remicade, Entocort 3/day, Rowasa ,
Apriso/4 pills
Citalopram 20 MG
Align


LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 7/1/2009 9:27 AM (GMT -6)   
Best wishes to you and your family. Fingers crossed...hoping everything will be ok.
Stay positive and you'll make it through this.
Chuck - 28 yrs and counting
 
Diagnosed w/ UC Dec 08 - pancolitis
 -----------------------------------
Pentasa 500mg 2pills-4x daily
Prednisone 50mg Calicium + Vit D
Multivitamin, vitamin C, probiotics, fish oil
 
"If you can solve your problem, then what is the need of worrying? If you cannot solve it, then what is the use of worrying?"


Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 7/1/2009 9:31 AM (GMT -6)   
Just wanted to wish you all the best with everything. Stay strong.
Rio, 33 year old male. Diagnosed with UC in 2006
100 mg Azathioprine (stopped), 4800 mg Asacol
VSL#3 & Primadophilus Bifidus, Metamucil
Vitamin E enema or Asacol suppository occasionally


UC Momma
Regular Member


Date Joined May 2009
Total Posts : 113
   Posted 7/1/2009 9:36 AM (GMT -6)   
I am so sorry this has happened to you. My aunt was diagnosed with stage 4 colon cancer about 3.5 years ago...and guess what...she beat it! I know this is easier said than done, but try and have a positive attitude...you can get through this. You have support on this forum and we are all here for you! Take care and know that you are in our thoughts!

UC since'76
Regular Member


Date Joined Dec 2006
Total Posts : 77
   Posted 7/1/2009 9:45 AM (GMT -6)   
I am in Huntsville, Alabama and the place I just had the colonoscopy is Vanderbilt in Nashville. Actually, they seem to be pretty good. I just keep thinking about that long drive while I am sick from chemo.

I was just saying that if I ever have an emergency so bad I can't get to Nashville, I will have to go to the ER here in Huntsville so I can't make the doctors mad. And I can still go to my local hospital. That thing I said about having to drive to a small town for medical care did not happen. The negotiations with my local hospital and my insurance must have gotten worked out. However, They never sent a letter or anything saying everything is OK. They just left everyone hanging. So I ASSUME I am insured. The bills are getting paid.
Ulcerative Colitis since about 1976
Pan colitis since at least 1994
 
 
No meds. 
 
 


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 7/1/2009 9:49 AM (GMT -6)   
It's takes me about 40 minutes to get into the office there.
Proctitis DX 1999, Pancolitis DX 2008
Golimumab study (100mg every 4 weeks)
L-Glutamine 5000 mg + 600 mg pyridoxal alpha-ketoglutarate
Probiotis/VitD3 5000IU+Ca/1000mg DHA


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 7/1/2009 9:53 AM (GMT -6)   
I know many people in Huntsville (and one person's wife had cancer) so if you want me to do some checking with them about docs or whatever, let me know. They may be able to give you some help.
Carol

Remicade - will have my 29th infusion on July 8
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


UC since'76
Regular Member


Date Joined Dec 2006
Total Posts : 77
   Posted 7/1/2009 10:04 AM (GMT -6)   
Thank you for all the replies.

I am sitting here alone waiting for the surgeons to call. My son is coming at lunch to take the cat to the vet. His feet keep swelling up really big for no reason. They give him a cortisone shot and he gets better but any shot can make him turn diabetic. Then he would have to have regular bloodwork. Because he is a slasher at the vet's they have already told me he would not be a candidate for treatment of his diabetes and would have to be put to sleep instead. I couldn't lose him now.

This house is poorly built and even with a regular exterminator, chiggers get in. I am covered in bites and scratching uncontrollably.

The hallucinations are awful. Everything looks like it is alive and moving. I don't know anybody and my family is just my son and absent daughter. I wish I had someone to talk to. Being alone is terrible. You know, when someone is in prison and does something bad, what do they do? Solitary confinement. And me and lots of other people sit alone all day.
Ulcerative Colitis since about 1976
Pan colitis since at least 1994
 
 
No meds. 
 
 


Malkavian
Veteran Member


Date Joined Mar 2009
Total Posts : 1439
   Posted 7/1/2009 10:40 AM (GMT -6)   
Yet another reason why this disease sucks.

I'm sorry this happened to you. Hopefully it hasn't spread and removing the colon will take care of it. I wish you the best of luck in receiving prompt treatment. And I hope your kitty gets better, too.

Also, try to get some sleep. You need to take care of your body as much as you can right now.

And what the heck are chiggers?
21, female, diagnosed 3/6/2009
Mild ulcerative colitis from rectum to mid transverse colon
Currently in remission
Currently taking Asacol (3x/day) and Calcium/D supplements


UC since'76
Regular Member


Date Joined Dec 2006
Total Posts : 77
   Posted 7/1/2009 10:49 AM (GMT -6)   
REDBUGS!

This is the South. They are tiny little red bugs that live in patches in the grass. You can be standing 5 feet away from someone and one person will be eaten up and the other not touched. They make a tinly red bite that looks like a flea bite. They put their mouth part in your skin where it is thin and secrete a substance that make a microscopic hard "drinking straw" When they are finished with you, they drop off but the straw takes about two weeks for your body to absorb. That is what causes all the itching. For TWO WEEKS.

I am allergic to them so one bite anywhere causes my whole body to itch. Right now my legs are covered in bites and I am in agony. I just called the exterminator.
Ulcerative Colitis since about 1976
Pan colitis since at least 1994
 
 
No meds. 
 
 


jano437
Veteran Member


Date Joined Jul 2005
Total Posts : 1614
   Posted 7/1/2009 11:34 AM (GMT -6)   
My thoughts are with you
Diagnosed July 2005 with Pancolitis
Asacol 4 tabs 3 times daily
Pro-Bio
Forvia
calcium


Malkavian
Veteran Member


Date Joined Mar 2009
Total Posts : 1439
   Posted 7/1/2009 12:22 PM (GMT -6)   
Ah, I don't think we get them in the North, but if it makes you feel better, I get really bad poison ivy (I have to be put on steroids or the rashes don't disappear) so I'm kind of in the same itchy boat as you. Though, at least I know how to avoid that as long as there's enough light to see it.
21, female, diagnosed 3/6/2009
Mild ulcerative colitis from rectum to mid transverse colon
Currently in remission
Currently taking Asacol (3x/day) and Calcium/D supplements


UC since'76
Regular Member


Date Joined Dec 2006
Total Posts : 77
   Posted 7/1/2009 12:37 PM (GMT -6)   
Malkavian, I am going to ask my doctor about steroids. I was thinking there might be something better than benadryl but I did not know what to ask for.

I would almost rather hurt than itch.

I want everyone to know that your support this morning has me calmer. The surgeons called and there will be a slight delay because of the holiday. But because I am so freaked out about being examined while awake, they are going to try to bunch several things I am going to need done before the surgery and put me out for them even though some of them are not stuff you usually get put out for. They are fairly small procedures and some are done by endoscopy, others by the surgeon. The sweet office lady is trying to coordinate all this right now and says she will call me back today.
Ulcerative Colitis since about 1976
Pan colitis since at least 1994
 
 
No meds. 
 
 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 7/1/2009 3:00 PM (GMT -6)   

UC76

My thoughts and prayers are with you and I hope they get it all out and you will be fine. A very dear friend had a chest xray in dec and it was read all clear, 5 mos later he wasn't feeling any better, still coughing etc and he had another chest xray done at another hospital and it came back suspicious...it ended up being a massive malignant tumor wrapped around his heart and bronchial tubes and unless they can shrink it, it is not operable and he'll have less than 1 year to live. The new docs looked at the original chest xray and showed my friend the tumor was clearly visable as a shadow even in the old xray...yet another case of malpractice...very scary.

On another note to all here re CAT scans: When I was in the ER two years ago in the midst of a VERY severe flair my cat scan showed NO inflammation...the colonoscopy done the next day showed moderate to severe inflammation...the point is cat scans are not conclusive for imflammation especially in the GI track...beware.



UC Forum Co-Moderator
I am not a healthcare provider. I am offering support and guidance based upon my own conclusions and/or research. ALWAYS consult with a qualified healthcare provider.

Post Edited (bbc) : 7/1/2009 6:12:12 PM (GMT-6)

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