Scared have colon c: Hi I’ve had thin... - Colon Cancer Conn...

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Scared have colon c

Lisa_Ann
Lisa_Ann

Hi I’ve had thin stools for 5 months now. I’ve spoken to my doctor so many times. They just say anxiety or IBS. One day they were normal then the next they weren’t. The day before when they were normal I was drinking veg and fruit shakes and then also taking vitamin C capsules every hour as I had a cold. I don’t think they were the right ones to take so I just thought I’d messed my gut up. But it’s been so long now. I’ve read posts on here and some have turned out to be c and some not just 5 months is a long time. I’m so scared and my doctors aren’t taking me seriously. Waiting for the nurse to call me. Can’t believe I didn’t push sooner. Trying to be positive but it’s not working and I’m starting to have more major panics. I had a colonoscopy but that was a year and a half before these new symptoms. Just worried I’ve left it too late now.

61 Replies

Hey :) if you’ve had a colonoscopy done a year and a half ago and it was clear then it is highly unlikely that anything is going on.

I’ve had bleeding for 2.5 years and had 2 colonoscopies but that was when it began over 2 years ago.

I do worry too because seeing blood is scary but I honestly think you are fine

Thank you for commenting. I really hope I will be ok. I haven’t had blood but I have thin stools. They aren’t as wide as they used to be. At first I thought it was because I was straining but it’s still like it 5 months later and they are thinner than they were. That’s what’s worrying me if there’s something in my colon making them thin.

How old are you?

40

Nicole_GCCA
Nicole_GCCAAdministrator in reply to Murrayhurray20

Hi Murrayhurray20 ,

How are you feeling lately? Any change in the symptoms as you get closer to your due date?

Have any of your doctors been able to find the cause of your bleeding?

I know doctors can be wary of any procedures or invasive examinations while pregnant.

Will you be seeking additional examinations after the birth if the bleeding continues? I may have mentioned this to you before, and I know you will likely be waiting until after you give birth, but I did want to share... We've heard from individuals who have rectal bleeding, that if they get a physical exam from the doctor while not actively bleeding (within the last day or so), that sometimes the doctors have had a hard time identifying where the blood was coming from. We have heard that doctors tell patients "if you were bleeding today I would be able to see where it is coming from." If this is the case, I would recommend discussing with the doctor a plan for when you are actively bleeding - is it possible to have a note in your file and that they squeeze you in when you are next actively bleeding.

I hope that all is going well with the pregnancy and thanks for being an active member of Colon Cancer Connected!

~Nicole, GCCA Staff Member & Colon Cancer Connected Site Administrator.

Just a reminder - this group is here to offer support, share experiences, and offer our thoughts - but this is not medical advice, and you should always consult your medical professional(s). Additionally, for all emergencies, seek urgent medical care, never delay.

Hi Nicole, I’ve got 5 weeks left until I’m due. I’m still having the issues but I haven’t bled for the past 2 weeks.

I do have internal hems so haven’t been back to my consultant because I know they won’t do much and I had 2 colonoscopies done 2 years ago.

I will go back and see him once I’ve given birth because I do still worry even though he’s told me there’s nothing except internal hems.

Nicole_GCCA
Nicole_GCCAAdministrator in reply to Murrayhurray20

Murrayhurray20 - I hope the next five weeks go well!

We have many site members who have/have had internal hemorrhoids and one reason that we particularly don't like when it is left as that being the cause and nothing to be done - is that should there be another reason for rectal bleeding, it might be written off as being from the internal hemorrhoids.

It may be time to seek a second opinion or determine how the internal hemorrhoids can be treated so that rectal bleeding isn't a common or ongoing occurrence for you. While there often are less serious causes for rectal bleeding (less serious than colorectal cancer), your medical team should work with you to help determine how to treat the cause of the bleeding.

Keep us posted and we hope all goes well in 5 weeks!

~Nicole @ GCCA

Nicole_GCCA
Nicole_GCCAAdministrator

Hi Lisa_Ann ,

Thank you for posting in Colon Cancer Connected. I'm sorry that these symptoms are causing you anxiety. You are in a group that knows what you are going through, and we're here for you.

As hard as it is, try to not let the anxiety get to you too much. (I know that it is a lot easier said than done!). Our GI systems are very sensitive to stress and anxiety and can make symptoms worse.

Many many people who post in our group are sure that they've got colon cancer, and thankfully, most of the time they do not. We do believe that if something is "off" it is very important to get it checked out. Sometimes that means changing Doctors. If you do not feel that your Doctor is taking your health concerns seriously, they may not be a good fit to be overseeing your medical care.

There are many possible chronic conditions that could cause the symptoms you are experiencing. It is also possible that you are experiencing an allergy or a reaction to an environmental factor, medication, or food. Try not to get ahead of the diagnosis, but definitely do continue to follow up and make it a goal to get examined, and if necessary, change doctors.

As long as you are working on getting an appointment or seeking out another doctor, you are doing everything you "should" be doing. Do your best to put your energy into getting examined by a doctor and preparing for that appointment.

Before you speak to your doctor, be sure to have written down a list of all medications that you are currently taking, including over-the-counter medications and supplements. Often, patients with GI issues will also keep a food journal to track food and beverage intake, bowel movements, any pain or bleeding, etc. This could be useful information for your doctor. Additionally, it could show you a pattern (for instance, possibly being lactose intolerant, if you experience diarrhea after eating dairy).

Other than advocating for getting examined to rule out colorectal cancer and being prepared for your appointment - we recommend distraction. The last thing we want is for your health anxiety will continue to rise.

Many people find that distracting themselves is helpful in getting through the time period in waiting for a doctor's appointment test results, etc. Some suggestions: binging Netflix, a self-care routine such as yoga, taking a bath, face-timing with friends/family, going for a walk, doing arts/crafts, writing down in a diary about how you are feeling, etc.

There's no easy answer here in that you may need to have an uncomfortable conversation with your doctor to let them know that you are going to seek medical care elsewhere because you do not feel your needs are being met (or, some people prefer not to share with the doctor why they are switching, of course, that is up to you). If something feels off, then it is important to be examined. Our hope is that your systems are being caused by a condition that is easily treatable.

Please keep us updated and if you need any encouragement or just want to vent, we are here.

We hope you find some relief soon and get answers as well.

~Nicole, GCCA Staff Member & Colon Cancer Connected Site Administrator.

Just a reminder - this group is here to offer support, share experiences, and offer our thoughts - but this is not medical advice, and you should always consult your medical professional(s). Additionally, for all emergencies, seek urgent medical care, never delay.

Lisa_Ann
Lisa_Ann in reply to Nicole_GCCA

Thank you. I finally have a referral to gastro consultants. Hopefully this Thursday it I can use my medical insurance. Just so worried as I should have pushed this sooner rather than waiting 5 months! I am struggling not to let my anxiety get the best of me and I’m struggling to look after my 2 kids. It was hard to get out of bed this morning. Xx

I just had a colonoscopy today and I’ve been bleeding for about 5 years and loose or thin stools for about 3 or 4 years and my scope came back clear they did remove 3 very small polyps dr said their benign so I wouldn’t worry especially if you had a scope done not that long ago.

Oh yeah I forgot to mention they also found hemorrhoids

Nicole_GCCA
Nicole_GCCAAdministrator in reply to Jaymendoza0288

Jaymendoza0288 - glad to hear that they were able to remove benign polyps and that they also found the cause of the bleeding. Will you be getting treatment for the internal hemorrhoids? Do you have a game plan for if the bleeding continues?

Congratulations on a good colonoscopy and for getting screened after 5 years of symptoms.

~Nicole @ GCCA

I am so pleased for you that your colonoscopy was clear. Did you always have thin stools? I’ve had them in the past but they used to go back to normal. But this time they are just thin. I’m just so scared as some with have c then some won’t but until each person is checked out I guess won’t know. Did you not have the colonoscopy before if you had the thin stools so long? My doctor don’t think there an issue but I’ve pushed as I have been losing weight as well but I did put a lot of weight on when I was pregnant. And I’ve not been eating as much as I used to so hard to tell if it’s that why I’m losing weight. Xx

kewl1
kewl1 in reply to Lisa_Ann

From my own experience of all of a sudden having thin stools for two months, and going 5 times in the morning instead of one, I think a colonoscopy is definitely a smart move.

Lisa_Ann
Lisa_Ann in reply to kewl1

I’m so sorry you went through this. I was hoping it was a good sign one day being ok then but the next. But if that happened to you that’s not the case so I am very scared now. I’m annoyed I let the doctors leave me 5 months now as I hope things aren’t very very bad. I do go once a day sometimes 2 but guess that don’t matter does it. Just hope it’s not too late. I should have pushed this but what can I do now. If I’d have left to my doctor I’d be doing nothing. Just hope that’s not cost me.

kewl1
kewl1 in reply to Lisa_Ann

I hope I didn't scare you. I had it in my family so when I Googled and saw colon cancer as one possibility I thought I better look into it quickly. It was going to take a while to get a colonoscopy but my daughter asked a doctor she knew if he could get me in faster and he did. I think I waited about a month or 6 weeks and then within 2 months of Googling, I was operated on.

Lisa_Ann
Lisa_Ann in reply to kewl1

What you have gone through has scared me as I was hoping it’s a good sign one day stools normal and then the next thin as I thought it would be a gradual thing rather than thin stools all of a sudden. But you are just sharing your experience so don’t worry. When my thin stools happened I’d had a colonoscopy a year and a half ago but guess that doesn’t matter does it. Glad your were looked after really well. Hope you’re doing ok. Was your CT and colonoscopy clear. I read your list that you’d experienced weight loss. Just wondered did you have any blood tests done that were off?

kewl1
kewl1 in reply to Lisa_Ann

Hi Lisa,

I just saw my surgeon last week and had a blood test on the way out of the hospital. So I don't know the results. I've deliberately tried to eat smarter since I got cancer. I've tried to keep weight off and I've actually lost 1/3 of what I once weighed. Now I seem to be able to get away with eating anything. But without a rectum, I have to go to the bathroom very often which I am not crazy about. I try not to overeat and spread out the food.

As far as worrying goes. I remember when I first told one of my friends I had colon cancer. He said that in his lifetime he had known a dozen people who had it including his own mother, and none of them had died. I saw people in the cancer hospital that had other things that looked so bad I felt that I was the lucky one.

Lisa_Ann
Lisa_Ann in reply to kewl1

My doctor done some bloods but he said that wouldn’t show anything but guess you had marker blood tests. Had a load of bloods done in the summer before I had thin stools as I was feeling ill and they all came back fine he did quite a few and said it would pick something up but then he changed his mind when I asked for blood again recently. Unfortunately my friend who I went school with passed with bowel c. She was only 38. We hadn’t been in touch and she didn’t tell us so I’m not sure what happened. It’s worrying when you’re below the age as they don’t investigate. So it becomes too late. That’s why I am terrified as it’s been so long having the thin stools and the doctor still would have left it. I am terrified. I have a major fear of being put to sleep as well but c fear is so much more. This is horrible. I don’t know where I’m going to get the strength from. I’ve read people’s posts and they were only given not long. It’s horrible. Xx

kewl1
kewl1 in reply to Lisa_Ann

Regarding fear of being put to sleep for a colonoscopy. I must be an exception as I have never been asleep for one, ever. My brother had one this morning and like everyone else I know, he remembers nothing. The drugs they have given me have not had any effect. The time they found cancer I am quite certain that they forgot to give me any drug at all. I was called into a small room where the nurse put the port in the back of my hand and then sent me back to the waiting room. I am quite sure that when I was then called in for the test they must have forgotten to plug the drug in because I felt absolutely nothing and as always, got to watch the entire thing on the big screen.

So because I have watched every colonoscopy (and I hope I am not speaking out of turn here) I would think that you could elect to not be put to sleep. I was told that they don't like to have people really knocked out like they used to but I guess what they give do you does make most people sleep. This morning my brother in the US got Fentanyl for pain and something else to relax him. Fentanyl does not work on me at all, at least in the amounts I have been given. It didn't seem to do anything as a pain killer after my operation either. I asked what they were giving me last time I had a colonoscopy and that's what they gave me. My first ever colonoscopy was with Valium and that did relax me but still, I watched the whole thing.

I guess I can understand a fear of being put to sleep, but this is not like when you have an operation and they really put you under. I have a friend with a fear of needles. He actually gets his teeth drilled and filled with no anesthetic. Ouch! I would run away from the dentist. I hope he never needs an operation LOL. Anyway, maybe just tell them you don't want to be put asleep but prefer to just be mildly relaxed. Also, keep in mind that this is a very common test.

Lisa_Ann
Lisa_Ann in reply to kewl1

I’m sorry I mean if I were to have c and have to have an operation. I know I’m jumping the gun as I don’t know what’s what yet but I suffer with very bad health anxiety and I tend to over thing worst case scenarios badly. I had a colonoscopy 2 years ago January just gone which was about 1 and a half years when my symptoms started and I had it at first with nothing but it was hurting so they gave me sedation. Think it was a mild one as I was awake. Unless it was just something for the pain I can’t remember now. I have my appointment at 2pm today. 2 hours and 15 minutes time. I’m so scared. My bowel habits are terrible. Other than the thin stools I am having diarrhea a lot which isn’t a good sign either. Just hope if it is bad news things can be sorted so I will be ok. Read too many sad things. How are you doing? Xx

kewl1
kewl1 in reply to Lisa_Ann

Take a deep breath and just tell yourself it will be all over this afternoon. I am feeling the same way today but about the stock market ;-)

Nicole_GCCA
Nicole_GCCAAdministrator in reply to kewl1

kewl1 , I'm glad to hear you had the appointment with the surgeon. Please share an update when you can. We're thinking of you and appreciate you sharing your experiences and being an active part of Colon Cancer Connected.

~Nicole @ GCCA

kewl1
kewl1 in reply to Nicole_GCCA

Thanks so much Nicole. For sure I will report back after my test

kewl1
kewl1 in reply to Nicole_GCCA

Update: On Monday I had my annual CT scan. On Wed when I called my family doctor for my scripts she already had been copies on the results and said that everything was good. She specifically mentioned stomach and chest.

Yesterday I had my colonoscopy. I also asked my surgeon if he would mind looking at my esophagus as well due to family history. Plus I've been on Losec for about 25 years due to reflux. As mentioned previously the drugs do absolutely nothing at all to relax me. I don't understand how people can actually go to sleep or have no memory of the procedure.

Anyway, I watched both tests. My colon was just fine as far as I know. My esophagus had 3 polyps one of which he sampled for biopsy. I have a telephone interview with him a week from today. I also see my Oncologist and have a blood test on Monday morning. I believe this was the 8th colonoscopy of my life, (I've had those sigmoids deals as well after my rectum was removed) and this one was by far the least painful of all. My weight is still going down but I am going to try to just stop worrying about it. I believe he said something (I could be mistaken) about the colon, not absorbing food or something like that. Maybe that means I can't blame not having a rectum for losing weight? I think I really need to try to eat less because I am having an increasing number of bad nights or days where I run to the bathroom 8 to 13+ times. Seven since March 15th. At one time I think I went months without a problem but I also think I was eating less.

Have a great weekend :-)

😷

Nicole_GCCA
Nicole_GCCAAdministrator in reply to kewl1

Hi kewl1 ,Thank you for giving the update on your colonoscopy. So glad you advocated for the. endoscopy for your esophagus due to the acid reflux and the meds you take to treat it. Any news on when those biopsy results will be coming in?

Has a nutritionist been recommended to you? Seeing a nutritionist that specializes in oncology can really make a big difference. Following surgery and removal of the rectum, the body does change how food is absorbed and there's a lot that an oncology dietician could educate you on to ensure you are eating the right types of food so that your body is maintaining weight. We actually have a nutritionist that will be speaking at our upcoming 2021 Colorectal Cancer Congress. It is a virtual online event and one speaker is talking specifically about what you need to know about nutrition and colorectal cancer. The event launches on April 27, and on April 27 and 28 the GCCA and presenters will be live-tweeting along with sessions, and then the sessions will be available to watch on-demand, year-long on our site - gccacongress.org. Please check it out!

Please provide an update when you can on the biopsies from the esophagus.

~Nicole, GCCA Staff Member & Colon Cancer Connected Site Administrator.

Just a reminder - this group is here to offer support, share experiences, and offer our thoughts - but this is not medical advice, and you should always consult your medical professional(s). Additionally, for all emergencies, seek urgent medical care, never delay.

kewl1
kewl1 in reply to Nicole_GCCA

Hi Nicole,Thanks so much for checking up on me. I was to discuss my tests on the phone with my surgeon on Friday March 26th. But he has postponed due to not having the biopsy results. It is now set for April 16th unless he gets it earlier.

I went to see my Oncologist onMarch 22. I was very glad to have an early appointment. I was to have my blood test at 8:45 and I did. I then walked down the hall to his office and almost no one there. Great! They weighed me and almost immediately sent me to the small room. Wow, this was going smooth and fast. The intern comes in as usual and asks all the questions as well as listening to my heart. Then she left me to wait for the doctor. A little while later she came back and said he can't see you as he is self-isolating" What??

I even thought I saw him in the hall walking quickly but he was wearing a mask and I was not wearing my glasses. Wouldn't you think they would have called me? That kinda makes me think that perhaps there was an incident as soon as he came in. In any case, the intern said that my blood test was negative for cancer.

Interesting about the nutritionist. No one has ever mentioned that to me at all except about 20 or more years ago when I went to see one because of cholesterol. I will definitely check out the Cancer Congress. This sounds very interesting. I'm 150 pounds today after once being 223. I wonder if I even still need my Crestor LOL

Thanks Again

😷PS: Got my first vaccination Saturday

Nicole_GCCA
Nicole_GCCAAdministrator in reply to kewl1

kewl1 ,So glad to hear the blood tests came negative for cancer. What an odd story about the doctor and the self-isolating!

That is a shame that nutrition has never been mentioned. It is such a key factor (as well as exercise) for people in treatment, as well as reducing the risk of a recurrence of cancer.

I don't believe I gave you this link to an incredible resource, and actually, the presentations from the dietician Rachel Wong are on this site as well. GI Cancers Alliance created this amazing nutritional booklet that I hope you will find useful. You can download it from their website here: gicancersalliance.org/resou...

Please keep us updated on your biopsy results, and I hope that you can get an appointment with a dietician that specializes in oncology. Even better to get one that has experience with colorectal cancer/ostomies as food absorption changes drastically post-surgery.

Thanks for being an active member of our group!

~Nicole @ GCCA

kewl1
kewl1 in reply to Nicole_GCCA

Thanks very much Nicole. This is great stuff. I downloaded and am still reding it. I will keep you updated.Happy Easter

😷

kewl1
kewl1 in reply to Nicole_GCCA

Hi Nicole,

Well, I haven't spoken to my surgeon yet since he postponed the call because the biopsy wasn't back. But this afternoon my family doctor called. She was copied on the results and says that I do have Barretts. She said something about 4 biopsies. Good thing I asked for the test. She said that the Losec (Prilosec in the US) that I have been on for so many years is old technology. She said that when I speak with the surgeon I should ask if I should increase it to twice per day or consider a new drug. Losec has been a miracle drug. I never, ever get heartburn, and 25 years ago I remember eating 4 extra-strength Tums at once.

I'm the oldest of 6. Five of us have reflux and one just occasional heartburn. My mom had terrible reflux and Barrettes. They called it pre-cancer and told her she needed an experimental operation in 1993 She died on the operating table. I'm sure that she had no idea what she was getting into.

Thanks and stay tuned. I should talk to the surgeon on the 16th

Nicole_GCCA
Nicole_GCCAAdministrator in reply to Lisa_Ann

Hi Lisa_Ann,

I'm sorry it sounds like the anxiety has increased and that must be very difficult when you have these concerns and are waiting on a doctor's appointment. Remember that all you can do is advocate for yourself to get the appointment and the tests that you need in order to determine if there is something going on that needs to be treated.

Our members do not mean to scare you - and while sometimes people will experience similar symptoms before being diagnosed with colorectal cancer, many people will experience very different or no symptoms at all. The only way to know for sure is to get screened by a medical professional.

If you are concerned about sedation, there is the virtual colonoscopy (CT Colonography) option and no sedation is required. However, they do need to insert air inside your rectum so that they can get clear images of your colon. Some people prefer this option as there is no sedation. You would still need to do the prep the night prior.

I'm really sorry to hear the anxiety in your words and hope that you get some answers and relief soon.

We're here for you and just remember that stress will not be good for your body and to try to focus on advocating for the testing that you need, and if that means seeking out another doctor, or doctors, then that is what is needed.

Please keep us posted,

Nicole @ GCCA

Lisa_Ann
Lisa_Ann in reply to Nicole_GCCA

It certainly has and I really can’t function I’m struggling so bad. Appointment is today at 2pm. So 2 hours and 12 minutes to go. Feel so sick and very scared. Terrified in fact. Xx

Lisa_Ann
Lisa_Ann in reply to Nicole_GCCA

Hi Nicole, do they have to use the contrast dye for this one? I did ask the consultant about this but he said he wouldn’t want to put me through the radiation but it was my choice as I would be paying. Xx

Nicole_GCCA
Nicole_GCCAAdministrator in reply to Lisa_Ann

Hi Lisa_Ann , For a Virtual Colonoscopy, you would drink a contrast medium. The amount of radiation that you are exposed to from a Virtual Colonoscopy varies based on the machine that they use (the newer ones emit less radiation) but I will be honest I haven't heard many doctors say that they don't want to perform one because of the radiation risk. Again, I'm not a medical professional and can't give medical advice, so I'm just sharing from what I've heard from other patients.I see you have another comment below - let me respond to that as well.

~Nicole @ GCCA

Lisa_Ann
Lisa_Ann in reply to kewl1

How often do you have to have a colonoscopy?

kewl1
kewl1 in reply to Lisa_Ann

I had my first one sometime after the age of 50 when a doctor told me that everyone over 50 should have one. She offered to do it herself. She found 4 polyps, 2 of which she said were the kind that can turn into cancer. She zapped them all and told me to come back in a year.

A year later two tiny "pimples". She zapped those and said come back in 3 years. Three years later nothing, come back in 5. Five years later nothing, come back in 7.

But it was after 4 years that I got the symptoms. Since the cancer was removed in August 2017 I think I have had 2 plus some of those sigmoidoscopies that only go in 3 feet. I've had several CT scans and MRIs and in fact this month I have a CT scan and then a colonoscopy 3 days later. This was to be next year's colonoscopy but he moved it up a year. I must say that I think they really look after me well. At one point my surgeon said colonoscopy every 2 years, in fact, he told my wife everyone should have them every two years. But then he changed mine to 3 but now has moved it up to 2 for this next one.

Lisa_Ann
Lisa_Ann in reply to kewl1

I had mine 2 years ago in January and nothing was found but that don’t give me hope with the symptoms I’m having. I’m surprised they kept upping it when they found nothing as surely the older you got the less time it should have been especially with them finding the polyps and pimples but I’m so glad you were ok in the end and I really hope it continues. Xx

To be honest I didn’t know a lot of the symptoms of colon cancer so I never really payed attention to my stools till recently so I never thought of getting a colonoscopy until now. It wasn’t until I started to google my symptoms that I was like wait something isn’t right and started to investigate with my dr but I know for sure I’ve had loose or thin stools for some years I just didn’t think nothing of it

Ooh so u had been bleeding for 5 years but why do you wait till now to get a colonoscopy?? Aren’t you worried over the years in the bleeding etc??

Did they give a reason why they could be thin and loose? Seems to be what’s happening to me. Lots of days they’ve been loose now though. Xx

How often do you experience bleeding jay? So pleased your colonoscopy was clear

About once or twice every 3 or 4 weeks

How long does your bleeding last for at a time?

It is never too late. My mother had a broken hip and two broken vertebra in 2017. She was 91 and doctors refused the surgery. I took my mother and came back at home. Our nurse said that ı seem bad too and he took a blood sample to see how my cea was going on. It was bad. I had bowel cancer. I had to go for colonoscopy. But i refused to go because i had to take care of mom. In 2020 april i had a bowel perforation. I have a very good nurse. He took me to hospital choose my surgeon and assisted my surgery i let him take all the decisions during and after the surgery. And now i am fine. Do not panic it is never too late. Moreover i am a molecular biologist and i can tell you that every day we get cancer but our body win that war against cancer. Be strong and you will win that war. Trust your body defense mechanism and take good care of it.

Lisa_Ann
Lisa_Ann in reply to aysedeniz

So sorry you had to go through that but so happy you’re ok now. Hope your mum is ok too. I can’t help but worry as some people with thin stools have not had good outcomes so it scares me. I think I m living in mould so that is impacting my immune system. Really need to get out but it’s not so easy. Xx

aysedeniz
aysedeniz in reply to Lisa_Ann

My neighbour lives for 17 years. I am reading jane mc lellland and prof mikhail tombak s books. And i am trying to build a new life style I wish good luck for you personaly and all people suffering of cancer

Hi all, thought I’d give an update.

I went for my appointment last week and not really much progress really.

I went private as thought my insurance would cover it but not sure it will and my doctor doesn’t consider it urgent so NHS referral could take a while. But I saw the private consultant and he knows my insurance may not cover it yet due to me mentioning weight loss and loose stools as that’s what I’d already on my file from a couple of years ago when I had issues and had the colonoscopy. Wish I hadn’t said those things as it was really the thin stools that I’m concerned about and it’s those that’s been the issue all these months.

But anyway with the unknown insurance payout the consultant said he would ask my doctors to do a couple of stool tests the one for blood and one for inflammation. And also some blood tests. He also said if the stool tests come back negative I won’t need a colonoscopy but I’ve read posts I think on here that a lady had the stool test for blood and it came back negative but she did have a tumour so not sure that would settle my anxiety. He also said if I didn’t have a colonoscopy 2 years ago in January he would skip the FIT test and do the colonoscopy so that don’t fill me with reassurance. I asked if he could ask the NHS to do the colonoscopy and he said he don’t think they will if I had one before. But I have different symptoms so surely they should do it. I need my doctors to complete a form for the insurance and then hopefully they will pay. If not I guess I need to keep going on. But I need to do the stool tests anyway and see what they say. I did buy 3 FIT tests myself but too scared to do them. 😢 hope everyone is ok. Xx

Nicole_GCCA
Nicole_GCCAAdministrator

Hi Lisa_Ann ,This sounds so frustrating and I am sorry for what you are going through with insurance and fighting for this screening!

I might suggest contacting Bowel Cancer UK to see if they have any advice on working with your doctor and the NHS to try to get approval for a colonoscopy.

Check out their "How we can help" section: bowelcanceruk.org.uk/

False positives (shows an issue requiring a colonoscopy) and false negatives (shows no issues when there in fact is a reason for a colonoscopy) can occur in FIT tests. However, FIT tests are widely used and especially when used on an annual basis (or as determined by your doctor, can be very effective.)

Keep on doing what you are doing - even though it is surely very frustrating, you are being your own health advocate here to ensure you get the tests you need.

If BowelUK doesn't have the exact resources you need, please ask them to refer to you any organizations or groups that help people advocate with the NHS (could be unrelated to colon cancer, there may be organizations that do this across disease states).

Hang in there and please keep us updated. You are doing everything you should be doing, and don't give up!

~Nicole @ GCCA

Lisa_Ann
Lisa_Ann in reply to Nicole_GCCA

Thanks Nicole, it’s so hard I’m terrified. I have lost aLot of weight I am scared to weigh myself my the Pjarmas I got at Christmas are lose. So lose I have to roll them up. That made me look at myself and I can see I am so much thinner. My partner thinks it’s because I am not eating much sometimes. But I think I have lost more than I should quickly. That makes me scared that what ever it is has spread so bad. I know I need to be brave and push further testing. I was even watching colonoscopies last night on YouTube. My fear is so strong and I think it’s making me in denial. Burying my head in the sand if I don’t know it’s not there but it’s making me wake up so much panicking in the night. I’ve just done a home FIT test so waiting for the results. So scared. Xx

Lisa_Ann
Lisa_Ann in reply to Nicole_GCCA

I did the FIT test and it was positive. Waiting for my doctor to call and also will call consultant secretary at 1pm when she starts and see if can speak to consultant rather than wait for Thursday for my appointment with him. Xx

Nicole_GCCA
Nicole_GCCAAdministrator

Dear Lisa_Ann

Having positive FIT results can cause a lot of anxiety, and I would recommend doing your best not to get ahead of being sure you have colorectal cancer. I know this is really difficult to do. A positive FIT is not a colorectal cancer diagnosis, but we do know that it can cause a great deal of anxiety.

The FIT identified that there was blood in the stool. The positive result could be caused by a stomach ulcer, hemorrhoids, other inflammation. A positive FIT can also be due to a polyp, a pre-cancerous polyp, or colorectal cancer. A positive FIT means you need a colonoscopy to determine the reason for the positive result, but sometimes there are false positives, meaning that the FIT was positive, but there is no cancer.

Does this mean that because of the positive FIT, that you'll be able to get the colonoscopy?

Also, re: weight loss. Anxiety and not eating (as you mentioned that you aren't eating quite as much) can cause weight loss. Keep on doing what you are doing as you are - you are doing what you need to do to get some answers. I'm sorry this process has been so rough for you.

We're thinking of you!

~Nicole @ GCCA

Lisa_Ann
Lisa_Ann in reply to Nicole_GCCA

I’m also feeling sore. Worried things have escalated. Know shouldn’t jump the gun but if it is it’s been 5/6 months not. That’s not good. Xx

Nicole_GCCA
Nicole_GCCAAdministrator in reply to Lisa_Ann

Hi Lisa_Ann Again, sorry to hear about this level of anxiety it is causing. We wish you would be able to get a colonoscopy right away so that there isn't this ongoing question mark about what's going on.

Your doctor mentioning that it might be cancer can be hard to hear, but that's why you are getting checked out, and being such a great health advocate for yourself to ensure that you get the testing done to find out what is going on with you.

Is there a professional that you can speak with regarding the anxiety that this is causing you? Health anxiety is a very real condition and can make everyday life issues seem overwhelming when you constantly have this cloud of worrying about your health looming over your head.

We want you to be healthy - body and mind - so if you aren't currently speaking to someone about the anxiety and stress that your concerns about colorectal cancer are causing you, you may want to consider this.

There is an active group on HealthUnlocked called Anxiety and Depression Support, it might be worth posting there as well.

We'll be thinking of you and please keep us updated!

~Nicole @ GCCA

I think it’s because of the thin stools as well. I called my doctor and it was hard work getting him to listen. But while I’m trying to sort insurance out he has put me on the 2 week cancer pathway because of the FIT test. He even said to me so it might be cancer then if your FIT test was positive. That’s the reason you have them done. Can’t believe he said that to me!

Had a phone call Saturday from the hospital booking and book me in for endoscopy stig one. Sorry not sure on spelling and can’t be bothered to look to be honest. Feel so drained and deflated. Appointment is on Monday 22nd so not long. Not confident at all. Too many things pointing to bad. My thin stools went thinner the diarrhea and it hurts in my belly now and my bottom. Very scared. Not sure how I will get through this.

Just sitting waiting for my flexible sigmoidoscopy. Very scared. So tired as well as my baby didn’t sleep much last night and was restless. She must sense something is wrong. Feel so sick. My belly is sore as well.Definitely think something is wrong. Hard to be positive with all my symptoms. Xx

So scared feel like I can’t breath. Xx

How do I stay calm. Feel like I’m going to have a panic attack.

Hello Lisa_Ann how did your test go? Xx

Lisa_Ann
Lisa_Ann in reply to Rain_ism

Apart from hemorrhoids in the back passage nothing was found. Was a relief but not I have to make sure the other 2 parts of my bowel are ok so need a colonoscopy. But the doctor thinks that’s it and has referred me to gastro but could take months

Nicole_GCCA
Nicole_GCCAAdministrator

Hi Lisa_Ann ,I am glad to hear that the flex sig did identify some cause for your symptoms, but it is good to get the colonoscopy so that you can be sure there's nothing else going on that needs to be addressed.

What is the doctor recommending for treatment of the hemorrhoids? Are they severe enough that they are recommending a procedure on them? Or perhaps over-the-counter medication to help deal with the discomfort?

Please keep us updated as you are waiting on the colonoscopy.

We're thinking of you!

~Nicole, GCCA Staff Member & Colon Cancer Connected Site Administrator.

Just a reminder - this group is here to offer support, share experiences, and offer our thoughts - but this is not medical advice, and you should always consult your medical professional(s). Additionally, for all emergencies, seek urgent medical care, never delay.

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