Hello everyone,

I posted a little while back due to lower left abdominal pain, bowel changes, and major pain after a BM. I had been dx with severe diverticulitis back in May and the doctors have been assuming that all my current symptoms were due to a flare-up of diverticulitis. Although, it has felt completely different and did not respond to 25 days of very strong antibiotics. The first time, I was very tender to the touch and the meds worked almost immediately.This time has not been like that.

Anyhow, my internist had me call a GI doc that I saw 5 years ago and he ordered another ct scan which was 2 weeks out. He did not want to see me until the results were back. The night before the scan I was crying and doubled over with a different type of pain. It totally encompassed my entire waist area. I was sent for an emergency scan (they thought it was a bowel perforation) and turns out the pain was kidney stones. Also turns out that all the diverticulitis inflammation/infection is cleared up.

Now even though the stone pain is gone, I STILL have this pain that is constant over my lower left side, I have terrible pain after a BM and stool changes. I went back to my internist because GI doc does not want to see me because CT scan was clear and my internist sent me to my GYN. He said I had a perfect exam and he thinks my pain is due to my colon.

I had a bad weekend with this continuous pain and I believe on Friday there was a streak of orangish, red blood in my stool. Saw this twice. I have never had blood before and I cannot be completely sure that is what it was.

My questions to all of you...does this sound like colon pain? Should I push to see a GI doc? I had a colonoscopy almost 5 years ago so none of the doctors I have seen believe this is necessary. I am at my wits end. I feel terrible all the time and have gained weight because I cannot exercise anymore. Ughh..I just need an answer.I think my husband and friends are starting to think I am crazy because nothing is showing on tests. I think they are tired of hearing me complain about how bad I feel and the pain.

What would you do?

Please, any advice you can give, I would so appreciate it.

Blessings to all of you,
~Trish



OK, that

Trish:
Because you had a colonoscopy 5 years ago REALLY tells us NOTHING about what you are going through today. I don't know what physician told you this, but I find MANY physicians are misinformed when it comes to colorectal issues.

Five years is CERTAINLY enough time for polyps to develop. How old are you? If you are still menstruating, does the pain relate in any way to your cycle? If so, it may be endometriosis, which can be EXTREMELY PAINFUL, where endometrial tissue "sprays" retrograde and sticks to the outside of your uterus, ovaries, colon, etc. During menstruation each month, these "patches" and nodules that form, bleed and swell just as the lining of your uterus does as you have your period. Some women experience very heavy bleeding, others not. Some experience EXCRUTIATING pain, while others feel little. This is usually diagnosed through an exploratory laparoscopy... a surgical procedure where your OB/GYN takes you to the OR and inserts a small port and camera and visualizes your organs. There are different treatments available if this is the case.

If it is GI related, then you need another colonoscopy. A CT scan does NOT always show the inside of your intestine and whether any polyps are present. I personally would start by visiting a GI, have a colonoscopy and rule out a GI issue before having exploratory surgery with your OBGYN.

I hope all this makes sense. I wish you luck. Please keep us posted. :)

Regards,
CancerDad :angel:

Cancer Dad,

Thanks so much for your reply. I just do not know where to go from here.
With the pain and the unknown, I am exhausted physically and emotionally.

My internist (who I love and trust) says I do not need a colonoscopy because they are good for 7-10 years but he also admitted he just does not know what is causing my pain. I have spoken to the GI doctors nurse several times and she said he does not think it is GI related although I cannot understand this because he has not even seen me for an exam or consult.
I am assuming he is basing this on the CT scan results. He is supposed to be the best in our city so my family is saying I should trust him.

As for endometriosis, last year I had an exploratory lap because I had a complex cyst on my r ovary and the report states I do not have endo. I did talk to my GYN about the possibility last week but since I have no pain with my cycles or sex, he says he is almost positive that is not causing the pain.
He advised me to see a GI doc. He said the pain is directly over my colon and with increasing pain after BMs that it points to colon problems.

I am almost 37 with 2 beautiful girls and a wonderful husband. All I can think about is doom and gloom. I really feel like no one is listening to me.

Would polyps cause pain? Does this sound like intestinal pain?

Not sure whether to call back the gi that ordered scan or to seek out someone else. What do you all think?

Thanks again!!

I had four polyps removed last year after many years of pain and a diagnosis of irritable bowel. When the horrendous bleeding started, my doctor sent me for the colonoscopy (well, actually, I bled for nearly three years before telling him...will never do that again). I can't say if it was the polyps or I truly have IBS, but I would get pain so bad I could not stand up...and no pain medication ever helped. Oddly, I have not experienced any pain since the polyps were removed, so maybe they do cause pain!!

Trish:
I would see a different GI doctor. You CANNOT always see what is going on INSIDE the colon from a CT Scan. Your internist is basing his opinion on the statistics that he/she learned in med school, that colorectal cancer only happens in patients over 50. THIS IS NOT TRUE as I was diagnosed at 31 with Advanced Stage Rectal Cancer. There are MANY other people on this board under 40 fighting cancer. Time and time again, I have heard this that Internists just are not aware. I began bleeding at 28 and my Internal Medicine doctor told me that it was hemorrhoids, stress, and Advil. I believed her because I liked her, trusted her, and she was Board Certified in IM, so she MUST know. Well, she didn't. I self-referred at 31 when the intermittent bleeding became bad, and I was passing mucus and clots and going multiple times/day. Looking back now, I did also have pain and fatigue.

Well I did self-refer to a GI... he scoped me and found the tumor 2cm up my anus. I am NOT saying this will happen to you, but you NEED to be your own advocate and DEMAND A COLONOSCOPY. Your IM is WRONG about the 7-10 year thing.

Do yourself a favor... Go to another GI and get a colonoscopy. If you do have polyps, they will remove them then and there. If you wait long enough for them to become cancerous (if they were pre-cancerous polyps) then you will have a problem. PLEASE listen to your body.

Good Luck, :)
CancerDad :angel:

Sharon,

I can so sympathize with pain relievers not helping. I have a script for Percocet (which I hate taking) but while it takes away a bit of the pain, it does not take the pain completely away. Nothing takes it completely away. It is always there. I am happy to hear that your pain left with the removal of the polyps. Can polyps grow within 5 years?

Trish

Trish:
Polyps DEFINITELY can grow withing a 5 year period. Some people go in every 6 months to have full-grown polyps removed, others go in yearly.. some go every two years. It depends on a number of variables, but this is why I say that your IM is unfortunately mis-informed regarding the growth of polyps, and is doing what many physicians do and base your likliness on having them on your age. This is an incorrect approach... especially when there are symptoms present.

I strongly encourage you to get a colonoscopy.
Regards,
CancerDad

Agree with CD, my CT scans showed nothing. Yet the colonoscopy came up with a malignant tumor. Ended up Stage 3a and I'm going through Chemo now after having had surgery in July.

Go to a different GI and get checked out!

Carol B

Thanks everyone for your responses.

I did not hear back from the GI drs. office so I plan on calling a new GI in the morning. My IM doc referred me to the current doc so I am planning on calling a group that is under an umbrella with my dermatologists office. They have a good reputation although must people see the group that does not want to redo my colonoscopy.

Should I tell them it is for a second opinion? I am hoping they can see me in the next week or two.

Blessings
Trish

Trish,
I'll chime in with the same advice as the others. Get a colonoscopy. If your GI won't do it, then find a colon and rectal surgeon and ask him/her.

I was in a similar situation to yours last fall ( I say similar - please don't read too much into this or get too worried). I had abdominal pain and rectal pain, but even more obvious were two swollen and firm lymph nodes in my groin. I went back and forth between my internist and my gyno several times for four months. They did a few blood tests and finally a CT scan. They decided the lymph nodes must be due to a latent herpes infection and treated me with Valtrex (I had shingles in June, that combined with the location of the lymph nodes led to this conclusion). They also passed it off as irritable bowel syndrome and gave me some advice and meds for managing it. On my last visit to my Internist I had lost five pounds and was feeling horrible. He said my bloodwork and CT were fine and tried to perscribe Prozac. His last words to me. "I'll see you back here in four months".

It was ridiculous. When I finally found my way to my rectal surgeon he did a digital exam and found the caner immediately. The following Monday I had a CT scan and it*was confirmed - state III, n2. I began treatment immediately after that, but four months later my cancer had metastasized to my liver. Game over for me. I still look back on those four months when I tried and tried to find answers for my illness. I still wonder if things would be different if they'd caught the cancer when I first asked for help.

Please use this example as a reason to demand a colonoscopy NOW. But please don't become too frightened by it. There are many other things that can cause the symptoms you describe and odds are, you won't repeat the horror I've been through.

Good luck!

Lifes2short,

Thank you so much for sharing your experience with me. I am so sorry to hear what an ordeal you have went through. Thanks goodness you did not wait four months to go back to your family doc. I will say a prayer for you; I read your question about liver resection and will pray that your neighbor gives you positive answers.

You mentioned that you had abdominal pain. Can you describe your pain? Did you have other symptoms? I have never heard of a digital exam. Did your Dr. do that in his office? I thought I had a swollen node in my abdomen as well but it did not show up on the CT scan. Were you dx without a colonoscopy?

I am terrified about getting a colonoscopy. Not the test itself but what the results will be but everything inside of me is saying I have to find a doc who will schedule this. Obviously something is not right. I am so fatigued and the pain is so constant.

Your game is not over..be positive and keep fighting. You sound like a strong person!!

Thanks again!

Blessings
Trish

Trish,

Please do what you have to do to get that colonoscopy. The 7-10 year comment from your IM doc is BS... Also, it sounds like you COULD have colitis or chron's. I was diagnosed w/chron's in 99 - I have passed over 10 kidney stones - that is considered a "side effect" of chron's. Google that and you will find lots of info about it...

Also I CANNOT believe that they have not at least done a digital rectal exam on you. Ask for one...it is not the most fun you've ever had, but a trained colorectal specialist or GI will note any problems in your rectum very easily...

One thing I have learned is to trust my gut (no pun!) If you feel like something is wrong, then don't stop asking until you have ruled out everything. The only way to rule out colorectal cancer or colitis is to have that colonoscopy. A CT scan will not show that.

Good luck and keep us posted!

Well, I called the new GI's office this morning because the regular GI still has not called me back. I really feel that he blew me off after the CT scan showed the dicerticulitis was healed. Makes me angry that I am still in pain and no one seems to want to find out why...I felt so bad today that I stayed in my pj's until 2:00. With being PTO president, brownie leader and with my children's schedules, that is saying a lot. I am just so tired. The fatigue coupled with the pain has me exhausted to the point that I do not even want to take a shower.

The new office has me seeing a relatively young, new GI doc. I am not sure how I feel about that...but my appt. is Oct 20. If I wait to see someone else in the practice, it will not be until the week of Thanksgiving. What do you all think? The nurse I spoke with about my symptoms said that a colonoscopy scheduled with the new doc would not be until mid Nov. I am not very good with waiting especially when I feel so terrible.


Anyhow, now I have to wait. I need to pray for patience because I know having a colonoscopy is what I need.

Do you think if my Internist ordered a colonoscopy, I could have it sooner and would a GI doc do it or a general surgeon??

Thanks for letting me vent. I so appreciate the support and knowledge from everyone here. You are all terrific!

Many hugs and blessings to all of you,
Trish

Trish,
A digital exam is when they stick their finger (gloved and lubricated, of course) up your butt. That's how mine was found. I went through six doctor's appointments before anyone bothered. In retrospect, I should have insisted that my gynocologist do it when I first went to him for help.

Please keep pushing and keep trying to find someone who will see you sooner. Do you have a gynecologist who might listen to you and be able to get you help more quickly? (A Gyno could also check you for endometriosis)

Are there any colorectal (sometimes listed as colon and rectal) surgeons or specialists in your area? Or proctologists? You might have a better chance of seeing them sooner because their area of practice is not as broad as the GI specialists. Or if all else fails, go to an instacare and see if you can get a doctor there interested enough to do a digital exam and/or pull some strings to get you to a specialist more quickly. I know how horrible it is to have to wait when you are sick and scared.

In answer to your question about pain, my butt was very sore. My bowel habits had changed, I had frequent bouts of diarrhea and constipation. My stomach often felt upset. My stool became thin because the tumor was so large.

Keep pushing to see someone sooner. Be firm but nice when you are asking for an appointment. If that doesn't work, cry. It's so hard to continue to ask for help when the "experts" have told you that everything is fine. Have faith in what your gut is telling you. Keep trying.

PS. I had a VERY nice meeting with my neighbor today. He has given me real hope that I have a possibility to survive this. Thanks for asking.

Lifes2short,

I am thrilled to hear you had a positive conversation with your neighbor. I will continue to keep you in my thoughts and prayers. You can do this!! Please keep everyone posted here.

I justed opened another thread about my new appt. I actually have an appt. tomorrow with the original GI doc. I am amazed but happy that are fitting me in. Not sure why it has taken so long and I am worried he will not order a colonoscopy but I am going to fight for that darn test.

My GYN doc keeps telling me it is colon pain. He told me that the protocol for a diverticulitis episode (which I had in May) states that the patient is supposed to have a colonoscopy after they are healed to make sure it is not cancer / polyps. Now why would the GI doc not want to see me after the ct scan showed I was clear of diverticulitis? I just do not understand these egotistical doctors. I believe my GYN and my internist would advocate for the colonoscopy, if I asked them. Although my IM is not sure where the pain is coming from; he seems lost on a dx.

I have never had a digital exam; had never heard of one until this board. I am surprised that none of the docs I have seen, have performed this but it must be a common mistake. I am so sorry that it took them so long to dx you.
Maybe the doc will do this tomorrow....


Thanks so much for your posts!

Hugs and Blessings
Trish

Hi Trish:
Just make certain you tell your GI that IT IS MAL-PRACTICE if he does not schedule a colonoscopy based on your symptoms. Tell him/her that your OB/GYN has RULED OUT GYN issues and feels strongly that it MUST be GI related and that you REALLY feel it's necessary at this point to have one. Save the "malpractice" threat for if he/she gives you trouble... but make it clear about your OB/GYN and YOUR feelings. Basically assume that a colonoscopy will be scheduled. ;)

Should he/she not comply with your request, then start to threaten the malpractice stuff and say that YOU WOULD HATE TO SEE WHAT MIGHT HAPPEN if another physician who DOES conduct a colonoscopy finds a cancerous growth and if he/she actively participated in a delay of diagnosis for you.

Remember, you get more with honey. So TRY this first, BUT DON'T hesitate to use threats when necessary. :)

Good Luck,
CancerDad:angel: