Colonoscopy results. The more help, the better!

[KWalker]

I just went and got my colonoscopy results so I could have my own understanding of what was found because as I said, my doctor never seems to have time to go through anything with me.

From what I can see, I don't think anything looks too bad but maybe you guys can help me.

GROSS DESCRIPTION:
-"The specimen consists of five pieces of yellow mucosa 0.1 to 0.3 cm in greatest dimension."

"MICROSCOPIC DESCRIPTION:
-"Sections show colonic mucosa with ulceration and granulation tissue. The architecture of the colonic mucosa is distorted. There is cryptitis and cryptic abscesses. Multiple lymphoid aggregates are seen and the muscularsis mucosae are infiltrated by mononuclear inflammatory cells. There is no granuloma or dysplasia. The morphology is compatible with active crohn's disease."

Then for the doctor's observation:
"The gentleman just recently had a perirectal abscess drainage. The incision site was still quite fresh. I therefore only advanced the colonoscope up to a distance of about 60cm, i.e. splenic flexure. I did not want to put anymore undue pressure by torquing the instrument and opening the incision near the rectum.

The lower rectum was actually quite normal, but as soon as you got up about 10cm, there were changes typical of crohn's disease. The mucosa is cobblestoned with numerous small discrete ulcerations and friability. Biopsies were taken in a random fashion."





What do you guys think of this? Any help would be greatly appreciated.

Thanks a lot guys!

 

[Terriernut]

I think the report states quite clearly that you have inflammation and your crohns is active. Not a great report actually, and I'm sorry to see this. :frown:

When is the GI going to go over this with you? He'll have to. If you have an IBD nurse, she can go over the report with you as well, and follow up with what they would like to do.

 

[KWalker]

Yeah, I know my crohn's is active. He "went over this" with me during the less than minutes I was in his office before he sent me out the door so he could get on with his next patient before lunch. Literally all he said was I have active crohns and gave me a prescription for Imuran. I actually didn't even know what the prescription was for until the receptionist told me the instructions. I don't have an IBD nurse. I'm not sure if you read through another thread I made but my doctor is a really terrible doctor and I'm trying to look for a new one.

 

[KWalker]

I have found a GI about 20km away from me which is actually a lot closer than I thought the next nearest one would be so I left his office a message and I'm waiting for a reply back. I'm not sure if I would need a referral or if they would just take me without one so I'm waiting to see how that works out.

My doctor's appointment was....last Friday I believe which is when he prescribed me the Imuran and I haven't even filled the prescription yet. I really don't like the side effects/risks of the Imuran, especially when (like everyone says) it's takes months to work. I could wait a few months (if it takes that long) to find the right doctor, and get on something like you said to attack the inflammation right away but with less risks and I would still be at the same point as I would taking the Imuran without any benefits in the first few months. For me personally, Imuran is a last resort. There's still some medicine I haven't been on and that's what I want to try first.

Does it make sense seeing my results and hearing I don't have symptoms? Now that I'm taking the psyllium I don't have any physical signs of crohn's. Even the D is gone with the psyllium now and yesterday I didn't even go to the bathroom! When I think of active crohns, I think of pain, running to the bathroom, no-little appetite, no energy, etc. I don't have any of that. It doesn't make sense.

I really wish my doctor would have actually taken time to talk to me. He was opening the door and pointing me to the front office before I could even ask him anything. It was one of those times where things happen so fast you don't even have time to think. I think that's part of the reason why I'm so reluctant to doing what he says is because he doesn't take the time to treat me like a person.

 

[Terriernut]

I was thinking entocort to get your inflammation down. Alot less side effects than pred.

The only problem with having active crohns and inflammation is this, scar tissue and blockages. You can be going along happily as can be, but the damage going on inside will get you down the road. Thats the scary bit. After being undiagnosed and on no meds to speak of for 15 years, my colon looks like a bomb hit it. And they cant fix it.

I would actually take your results to the GI you wish to see, and then leave with the nurse. I dont doubt they will get you in sooner.

And I know what its like to be treated like a number. Its not right, and no you dont have to take that!

 

[KWalker]

I'm not too familiar but I will look up Entocort and mention it to my doctor next time I see him. I haven't received a call back from the other specialist yet so maybe I'll just have to call him back and try and speak with somebody.



Does anybody else have any knowledge in this as well?

 

[Manzyb]

It seems to me that your results aren't good. If you have the active disease then you definitely need something to get things under control. I know that you said you feel fine and don't have any symptoms, but that doesn't always mean that things on the inside aren't going haywire. The psyllium will stop your diarrhea. It's a bulking agent, that's just what it does. I take it as well, but still have active disease.

I hope you find a better doctor who will take the time to explain things to you, and maybe offer you some better advice. It sucks, but I do think you will need some type of medicine to get things under control.

 

[Trysha]

Hi K,
You need to be treated much better than this and really need a good Gastroenterologist.
I have sent you a private message which may be helpful to you.
Feel better soon
Trysha

 

[Catherine]

Maybe try taking the report to gp for explaination and discussion of use something for treatment while you get a new gi.

 

[2thFairy]

You need blood work done before starting Imuran and need to have liver functions followed while on it. You also need a TB test before starting it. DEFINITELY get a different doctor!!

 

[KWalker]

Yeah I got the blood test stuff for the Imuran, although my doctor says "blood work isn't required" before starting. So should I hold off on the Imuran? I'm not going to wake up dead right? lol

 

[Catherine]

There is blood test that should done before starting, then blood tests every week for 4 weeks ,then every 3 months as long you are taking the medication.

This is the medication dusty kids take and my daughter.

 

[Catherine]

Sarah gi didnot the test before either but did do the weekly blood tests.

 

[KWalker]

224 views and only 14 replies? Ouch!



Judith, could you please look at this thread and see if you can understand any of what the doctor said and put it in simpler terms for me

 

[mum16]

Hi K.
You definitely need a new doctor, and fast. I dont know how the health care system works in your part of the world, but there's got to be a way. Sometimes we just have to shout a bit louder and insist. I noticed you are not taken ANY medicine now, and that is NOT a solution. Worse case, go back to your old doctor and put your foot down and demand some answers, and his undivided attention.
Good luck

 

[KWalker]

I understand that people think I should go back on medicine and I appreciate the concerns but I'm really looking for someone who can help me understand the results. I have my own reasons for staying off medicine as do we all have our own reasons for the things we do/dont do. I'm not the only person with active crohns not taking medicine and quite drankly I'm doing better without medicine than a lot of people are that are taking medicine. The only difference is I'm not pumping more chemicals into my body.

I have no problem going on medicine but I'll do so when I find a medicine, and doctor that I'm comfortable with. I do appreciate all the concerns though and I thank those of who have taken the time to reply. I'm just really looking for somebody to put these terms into ones I can understand.

 

[DustyKat]

Hey K,

What the report is describing is active Crohn's which you already know. The doctor did not want progress past the the bend of descending colon and into the transverse colon because of the reasons he stated. It is then anyones guess as to what may be happening higher up. He is describing active Crohn's as well.

Dusty. xxx

 

[KWalker]

Yeah he told me he didn't want to go any further up just to be safe because of my abscess surgery and the severity of that. We weren't even going to do the scope but figured some is better than none. I was trying to google the terms like the cyptitis and some of the other ones and can't really figure out what they mean in terms I would understand and how bad those things are.

 

[DustyKat]

The terms they are using are features you expect to see in certain bowel conditions. The features you have is what differentiates you as having Crohn's and are the changes in the bowel that result from inflammation. Crypts are small cavities in the bowel wall that result from conditions like Crohn's and when active inflammation is present they become infected , hence cryptitis and abscesses. They tend to be a feature of large bowel disease and particularly disease lower in the large bowel.

The lymphoid aggregates are clusters of cells that would be present due to the damaged bowel, they would be attempting to regain a healthy balance. The mononuclear inflammatory cells are also there trying to repair damage.

So you have descriptions of both damage and what is seen trying to limit that damage. Perhaps overly so...over active immune system???

Granulomas are another response to damage and are said to be the gold standard in a definitive diagnosis of Crohn's but that is a furhpy because not everyone with Crohn's has granulomas. Matt certainly doesn't.

Dysplasia is a change in a cell making it abnormal and those cells in turn infiltrating an organ or tissue. It is generally used when describing a change in a structure that may indicate something like cancer.

That my two cents worth and it is likely only worth a quarter of that since I am no expert! :lol:

Dusty. xxx

 

[KWalker]

Wow! Thanks DustyKat. My crohns is in the large bowel (just from previous knowledge). Did you say I have an over active immune system? What would that mean? If I'm thinking right that would be a good thing no? It sounds like it would be better than a weak immune system. I'm sure I'm wrong though.

With the other stuff like you said being present to try and repair the "damage" isn't that a good thing as well that my body's trying to fight back?

Lastly with the dysplasia, should I get tested for cancer? How would they do a test for that? Another scope? I know I'm at a greater risk because my dad died of cancer.

Thanks so much for that!

 

[KWalker]

Reading over my notes, it says there is no granuloma or dysplasia. Phew, I almost had a mini heart attack!

 

[DustyKat]

Yikes! Sorry, I thought you realised that there was no dysplasia. :redface:

The over active immune system is just me hypothesising. The main train of thought is that IBD is autoimmune and as such the immune system is overly active or stimulated. When they used the term "infiltrated" I was alluding to the fact that perhaps there is an over supply of white blood cells.

It is good to have a strong immune system that fights disease but unfortunately you can have too much of a good thing when your immune system is skewed like that in IBD. If your own body doesn't recognise that it is attacking itself then the war just keeps raging on, wreaking havoc on whatever it decides to target as the enemy.

Dusty. xxx

 

[KWalker]

Ah, thank you! Have you ever considered becoming a doctor? You would be SO much better than any I've ever dealt with!

 

[KWalker]

Ah, thank you! Have you ever considered becoming a doctor? You would be SO much better than any I've ever dealt with!

Okay lastly, pretend you have no idea about my medicine situation. Would these results be considered serious, mild, or fairly normal for the average crohns patient?

 

[DustyKat]

Not having seen your bowel and assuming pathology hasn't rated what they consider your level of disease activity to be then it is hard to say.

Obviously you have active disease and for the doc to jump straight to Imuran means he either believes in hitting things a little harder straight up or he puts your level of activity at moderate to severe.

If you were on medication and they were presented with these results I believe they would be either tweaking your meds or changing them as they have clinical and objective markers that show they aren't working.

The thing is KW I just don't know that this is going to resolve without intervention and the longer the inflammation festers away the more damage that will be done.

Dusty. xxx

 

[KWalker]

Could I find anywhere the pathology report that says how bad it is? The reason he is going straight to Imuran because although I haven't tried a few drugs yet he says I've tried all the ones worth trying so Imuran is next on the list. He wanted to put me on Imuran right from my first appointment with him before he saw a scope or the results from my previous doctor. When I questioned the Imuran he said it's standard practice for him because he finds that to be most effective...basically leading me to believe that he's doing this for his personal interests rather than treating each patient individually.

I know I've said this a few times, but I just cannot get over the fact I have absolutely 0 symptoms so I cannot see my crohns being "that bad" Sure it's active but like I've said there are people on medicine that don't even have close to the success as I have without them.. Just makes me wonder how bad it really is.

 

[2thFairy]

Dude... you have cryptitis with abscesses... it's that bad. You need meds.

 

[KWalker]

I'm not looking for any rude responses. I'm not an idiot and thinking I'm too tough for medicine, I'm just trying to understand. This is a support group, for people to help others understand things.


Do you have any knowledge of the situation or do you see the word abscess and think the worst case? I didn't come here doubting the usage of medicine or for people to tell me I need it because in the end that's up to me (and only me) to decide but I was looking for people like DustyKat with a backround knowledge to give me understanding of the situation.

 

[Terriernut]

The wiki has info on cryptitis and cryptitis with abcessess. Your GP can also go over these results with you.

 

[Sailorluna]

I think part of why they have you take the meds when you don't have symptoms (whether you are in remission or not ) is to keep it from progressing to a point where it has been causing you damage long enough that you start getting symptoms.

I had no symptoms but the big D for a long time. I took nothing but immodium and did my best to ignore it. Mostly because I had no idea that I had crohns.

A couple years ago I was surprised with a 10 inch blockage in a section of my intestine that I guess had been getting worse and worse over time. I didn't get pain until much of the damage was done.

 

[KWalker]

Thanks Sailorluna. Comments like that are what I'm looking for not "you need meds". That doesn't help me.

Do you have an illeostomy now?

 

[Trysha]

The normal appearance of the intestinal mucosa is pink and smooth.
The intestinal mucosa are part of the immune system.
Crypts are part of the microscopic layers of the mucosa.
When a disease such as Crohn's invades the area inflammation of the crypts may occur,ie cryptitis and infection ie abscesses may also form in these sublayers.
The muscularis mucosa is also part of the intestinal mucosa and is part of the
protective system of the body.
When all these things happen, it adds up to an
inflammatory attack, and/or infective process which still has yet to be defined.
There are some events in nanotechnology which will in the future amount to a blood test being available to check whether Mycobacterium species might be responsible for Crohns.
There are yet many unanswered questions as to the etiology of Crohns.
To interpret your results cryptitis, and abscesses, plus the inflammation would seem to be indicative of an infective process taking place in your body.
Your immune system is reacting to all this.
A physician would be remiss in duty to ignore these results and would most likely offer help in the form of antibiotics and /or immunosuppressants.
Hope this helps.
Best wishes
Trysha

 

[DustyKat]

I think it would be up to the pathologist as to whether they hazard a guess as to the severity of your disease. Do you have a copy of the full report? If not request a copy.

I understand what you are saying about the meds KW and your own situation. The highly individual nature of this disease is what makes it so frustrating. My own children were on opposite ends of the spectrum when it came to presentation, my daughter's tests (blood and imaging, she did not have scopes) always returned normal results and yet her physical symptoms were extreme at times, whereas my son's bloods reflected every little thing that was going on with him even before he had any physical inkling of it. Over time I have read of others in your situation, very little symptoms but war raging within, not that I am saying you have a war raging in there because I don't know that.
Unfortunately level of symptoms don't necessarily equate to disease activity and as hard as it is under these circumstances we have to defer to the expertise of others.

There will always be doctors that have a favoured treatment regime and will stick with that come hell or high water. You are going to seek another opinion aren't you??, sorry I'm sure that is right but I may have the wrong person!, and I think that is the best thing you can do, seek more than just a second opinion if need be. You need to be comfortable with the decisions you are going make. If it comes to you needing meds then having 2, 3 or 4 doctors all saying the same thing, although not making your decision any less difficult to come to terms with, it at least provides you with validation that your condition does need further treatment.

Dusty. xxx

 

[KWalker]

Thanks Trysha/Dusty. I do have a copy of the full report.. Or atleast I asked for it all and the receptionist says its all there. It was me that said I was going to get a second opinion and I still am. I'm not sure if its the same everywhere in the world but here in Ontario in order to see a G.I. You need a referal from another doctor so I can't just call and make my own app. I still am, but I'm not expecting it to be that easy. I think I've said it before as well but the clinic I go to has a doctor that's extremely knowledgeable and takes a long time with each patient (sucks when you're in the waiting room but good when its your turn lol) so I'm going to take my results to him and not only ask his opinions but tell him about the doctor I've heard about and I have no doubt that he will refer me.

Should I request more tests as well?

 

[KWalker]

I just found a few more records from the previous scope:

"I note from the small bowel he has the possibility of an entercolic fistula entering the colon at the level of sigmoid region. This is because of contrast seeming to bypass the colon and going from the cecum into the distal rectum. There was mucosal irregularity of the distal illeum as well as haustral fold thickening and mucosal irregularity of the right colon. His adominal ultrasound was reported as normal".

This is my last blood test:
"Blood work demonstrated a high CRP, an albumin that was low at 31.8 and a hemoglobin of 112 with an MCV of 67.2"


I'm not sure what those terms but see some highs and lows. Should I be looking for some vitamins/probiotics as well?

Seeing the reults from the last scope and than the one prior to that, do things seem to be worse, better, or relatively the same. The prior was taken in 2007 before going on Humira, Remicade, and Methotrexate.

Sorry, I'm not very smart with these terms lol

 

[Trysha]

The high CRP is indicative of the inflammation in the body and from the other results it looks as if your blood is on the low side with the hemoglobin. Your overall picture is one of an inflammatory process at work.
Other blood work you could ask about is Vit B12 , Ferritin Iron and Vit D3.
A good GI will not need prompting as to which tests need to be done and hopefully you will soon be seeing a good specialist.
Best wishes
Trysha

 

[KWalker]

Completely forget about the blood test results. I did not realize how old they were. I will have to find the newest ones. I know they're somewhere.

 

[Sailorluna]

Thanks Sailorluna. Comments like that are what I'm looking for not "you need meds". That doesn't help me.

Do you have an illeostomy now?

I do not have an illeostomy.

I don't know much about the technical terms from your medical report but I wonder ... are they saying you are at increased risk for abdominal abscess/fistula or am I missunderstanding?

 

[KWalker]

Oh okay, I wasn't sure if that was you or not. The old results say that I apparently had a fistula starting but it has since been taken care of. That was back in 07 when I was on medicine.

What was the result of the blockage? What happens when somebody has a blockage? Did it require surgery?

 

[Sailorluna]

I had a resection. They cut out the 10 inches, joined the 2 two ends and sewed me back up. I was in the hospital for 14 days.

 

[KWalker]

Oh ok. I was never really aware as to what a resection was. Thanks for clarifying that. I hope things are better for you

 

[Sailorluna]

That part is better now it is dealing with the abscess/fistula fun. Hope you get all the info you need.

 

[Judith]

I just went and got my colonoscopy results so I could have my own understanding of what was found because as I said, my doctor never seems to have time to go through anything with me.

From what I can see, I don't think anything looks too bad but maybe you guys can help me.

GROSS DESCRIPTION:
-"The specimen consists of five pieces of yellow mucosa 0.1 to 0.3 cm in greatest dimension."

"MICROSCOPIC DESCRIPTION:
-"Sections show colonic mucosa with ulceration and granulation tissue. The architecture of the colonic mucosa is distorted. There is cryptitis and cryptic abscesses. Multiple lymphoid aggregates are seen and the muscularsis mucosae are infiltrated by mononuclear inflammatory cells. There is no granuloma or dysplasia. The morphology is compatible with active crohn's disease."

Then for the doctor's observation:
"The gentleman just recently had a perirectal abscess drainage. The incision site was still quite fresh. I therefore only advanced the colonoscope up to a distance of about 60cm, i.e. splenic flexure. I did not want to put anymore undue pressure by torquing the instrument and opening the incision near the rectum.

The lower rectum was actually quite normal, but as soon as you got up about 10cm, there were changes typical of crohn's disease. The mucosa is cobblestoned with numerous small discrete ulcerations and friability. Biopsies were taken in a random fashion."

What do you guys think of this? Any help would be greatly appreciated.

Thanks a lot guys!

KWalker,
I am so sorry to hear your doctor doesnt have the time to talk to you about your illness. It is unfortunate and annoying.... because I am sure he bills you for it. :|

I am sorry I dont have more to add regarding your Physician's Findings paperwork. DustyKat owned it.... thanks Dusty!

My only real question about the paperwork is.... Is that it?? Or did you just give us a little snippit of his findings? Did they do any bloodwork to go along with these tests?

Again, I agree with DustyKat regarding the severity of your symptoms. However, the length of the document is so short and a bit vague so it is a bit difficult to call. For example, ulcerations are typical of more severe disease- but what size is he calling "small" and over what length of GI tract were these ulcerations vs. what length would be considered healthy?

Also, "no granuloma or dysplasia" = excellent. And, "friability" (easy to bleed or disintegrate when touched) indicates a moderate-type symptom in Crohn's disease, as opposed to chronic bleeding ulcerations (bleed without being disturbed).

It seems like more and more doctors are launching an all-out assault on Crohn's earlier in the course of treatment rather than the older "step-up" approach in which they used mild drugs initially and later would treat with the "big guns". The idea is to get out in front of the vicious cycle of inflammation to minimize inflammation-induced tissue damage before it occurs instead of responding to it.

It is a difficult decision because all of these meds have side effects. In addition, as promising as the new biologic drugs are for some patients (i.e. Remicade, Cimzia, Humira, etc.), they are still very new and the long-term side effects are still not well-described. No treatment regimen should be taken lightly and all known (and unknown) effects of treatment should be weighed against the very real possiblility of extensive complications due to Crohn's disease itself.

The great thing about this forum is if you are considering a new treatment there are probably a lot of people here who have already tried it and will help you understand what to expect.

I wish you all the best with whatever you decide.

 

[Catherine]

Kwalker

It must hard decision to make when you feeling well in yourself. I would like to believe diet helps with inflammation. Still holding on to hope that sarah will get into remission and came off aza in one to two years.

How bad were symptoms previously?

Really want to wish you all the best with finding a treatment that you are comfortable with.

 

[KWalker]

Judith: Thankfully in Canada we do not pay for doctor visits because if we did I would NOT be paying that man. You're right and Dusty did cover it, I believe I asked for your advice before her post because she answered everything. As far as the results, that's all there is lol. I got two pages worth, the first one is half taken up by the hospitals letter head, doctors info, etc and then the two paragraphs I posted (3-4 lines each) and than the second page is the same at the top and the ONLY info it says on that page is "crohns disease". What a waste of paper. There is no blood work, he didn't mention doing any other tests at all. Like I said with the Imuran, he wanted me to go on that right from the very first time I saw him before he even got my records from the previous doctor and at that point he had no proof I even had crohns. He just knew what I told him. Like I said as well, he believes Imuran is the answer to life pretty much. That's the only option he gave, he didnt want to talk about alternatives, etc.

As it shows in my signature, I've been on Humira, Remicade, Methotrexate (oral/injection), Prednisone, etc and they all work and then lose their effectiveness. That's why I've stopped them (with the doctor of course). My previous doctor and I pretty much made an agreement that he would let me try these meds (because I was one of his first to try them) if I allowed for ongoing tests, blood work, scopes, etc so he can track findings. I sometimes got the typical side effects of the drugs but the only reason we stopped each and moved to the next one was because they stopped working. I believe that's why the new doctor wants Imuran is because he figures that's the only med I haven't tried that's worth trying.

Thanks for your help/advice

Catherine: Thanks for the thoughts. I've never really had "severe" crohns. Back in '07 I lost a lot of weight, lots of canker sores, lots of pain, etc but I was going through a flare and once put on Prednisone for awhile it cleared right up. It was nothing really serious. I've never had surgery for crohns, or really even been hospitalized for that matter. I was diagnosed when I was just two years old and all through out my life (medicine or not) I've always had the same symptom. Diarrhea. That's all. I think that time in 07 was the only time I can remember where I actually flared like that, but normal days I don't get abdominal pain, I've always maintained a healthy weight, I eat like a horse (LOL), etc. If you were to see me on the street I'm a healthy person. From the physical side of it I'm no different than anybody else my age...except for I have diarrhea.

I've been off medicine since late-ish 2010 and at the time I was on methotrexate injections once a week with an indefinite prescription because of the distance I was from my G.I. at the time. I stopped it on my own (sounds stupid) simply because my life got super busy, I moved out on my own, started working long days/going to school, all that stuff and I just kept forgetting to take it. It started as "I'll just take it tomorrow" and than it slowly got to "I'll just wait until next week" and after not seeing ANY differences I started going every two weeks, every month, etc until I stopped completely with no differences at all. I don't feel any different today than when I was on Remicade or Humira either. Maybe I'm a rare case because of the fact I'm considered to have active crohns and show no physical symptoms.

Like I said earlier (I believe) I'm having better luck without medicine than some people are having while on medicine.. It just doesn't add up you know?

 

[Catherine]

How old are you? is this the first time it will be completely your decision to start treatment? If you decide too.

Early on sarah had no symptoms either other low iron levels and bit tireness which was put down to much exercise. maybe some blood test are order, hemoglobin, iron, folate, b12, d. Maybe something is showing in blood.

Just to give you a picture of your overall health.

 

[KWalker]

I'm 22. The Humira and Methotrexate was my decision as well. I hope you weren't hoping I was younger so it would be up to my mom. Like I said I'm not against medicine at all, I just want to be smart about it and not rush into it. A second opinion, a doctor I can trust/feel comfortable with, more tests (if needed), etc. So I/we know exactly where the problem is and we can attack that specifically rather than going on a drug that might not do anything, and i want to find a doctor that will help me find the safest, most efficient way of doing so.

I'm a smart, mature person. I hope I'm not coming off as an immature teenage in denial.

 

[Catherine]

I have read your other threads and I already figured you would have been a least 21 allowing for 3 years of uni.

I think you are adult trying to make an informed about treatments options. If you were i in denial you would not be asking questions.

Why would any one who has currently has few symptoms as you take the decision go on this med lightly.

Would I have agreed to this med so easily for sarah is she hadn't been so sick at dx. I meant pred lone got her back to school, gaining weight and gave her life back.

I still think my point stands, this is your first decision whether to start a med as a mature, smart adult.

 

[KWalker]

I see what you're saying. Like I said, Humira and Methorexate were both my decision as well. I know I'm going to make the right decision with medicine, I just don't think its going to be Imuran at this point. Hell, I'd rather go on prednisone short term and get the inflammation down before going to Imuran. If symptoms were worse I'd be all over Imuran but with the lack of symptoms, there's some less serious drugs I'd rather try first. I'd say that's a pretty reasonable agreement.

I appreciate your comments/concerns. I called the doctors office again that I'm trying to get in to see and spoke with the receptionist. She said she'd have to call me back and let me know if the doctor would require a referal or if because I have "fresh" colonoscopy results he would be willing to see me without a referal.

 

[DustyKat]

Are you having any further tests done since the scope was unable to navigate the full length of your large bowel?

I wonder what is happening to the ?fistula between the caecum and distal rectum as seen on a ?past CT? The reason I ask is, where the problematic area started, as seen via this scope, would be in the region of the distal rectum.

Dusty. xxx

 

[Catherine]

Good luck with whatever you decide. I actually think it good you are taking the time to weigh up options and make am informed decision. I wish we had the time to do that with sarah

 

[Judith]

Judith: Thankfully in Canada we do not pay for doctor visits because if we did I would NOT be paying that man. You're right and Dusty did cover it, I believe I asked for your advice before her post because she answered everything. As far as the results, that's all there is lol. I got two pages worth, the first one is half taken up by the hospitals letter head, doctors info, etc and then the two paragraphs I posted (3-4 lines each) and than the second page is the same at the top and the ONLY info it says on that page is "crohns disease". What a waste of paper. There is no blood work, he didn't mention doing any other tests at all. Like I said with the Imuran, he wanted me to go on that right from the very first time I saw him before he even got my records from the previous doctor and at that point he had no proof I even had crohns. He just knew what I told him. Like I said as well, he believes Imuran is the answer to life pretty much. That's the only option he gave, he didnt want to talk about alternatives, etc.

As it shows in my signature, I've been on Humira, Remicade, Methotrexate (oral/injection), Prednisone, etc and they all work and then lose their effectiveness. That's why I've stopped them (with the doctor of course). My previous doctor and I pretty much made an agreement that he would let me try these meds (because I was one of his first to try them) if I allowed for ongoing tests, blood work, scopes, etc so he can track findings. I sometimes got the typical side effects of the drugs but the only reason we stopped each and moved to the next one was because they stopped working. I believe that's why the new doctor wants Imuran is because he figures that's the only med I haven't tried that's worth trying.

Thanks for your help/advice

Catherine: Thanks for the thoughts. I've never really had "severe" crohns. Back in '07 I lost a lot of weight, lots of canker sores, lots of pain, etc but I was going through a flare and once put on Prednisone for awhile it cleared right up. It was nothing really serious. I've never had surgery for crohns, or really even been hospitalized for that matter. I was diagnosed when I was just two years old and all through out my life (medicine or not) I've always had the same symptom. Diarrhea. That's all. I think that time in 07 was the only time I can remember where I actually flared like that, but normal days I don't get abdominal pain, I've always maintained a healthy weight, I eat like a horse (LOL), etc. If you were to see me on the street I'm a healthy person. From the physical side of it I'm no different than anybody else my age...except for I have diarrhea.

I've been off medicine since late-ish 2010 and at the time I was on methotrexate injections once a week with an indefinite prescription because of the distance I was from my G.I. at the time. I stopped it on my own (sounds stupid) simply because my life got super busy, I moved out on my own, started working long days/going to school, all that stuff and I just kept forgetting to take it. It started as "I'll just take it tomorrow" and than it slowly got to "I'll just wait until next week" and after not seeing ANY differences I started going every two weeks, every month, etc until I stopped completely with no differences at all. I don't feel any different today than when I was on Remicade or Humira either. Maybe I'm a rare case because of the fact I'm considered to have active crohns and show no physical symptoms.

Like I said earlier (I believe) I'm having better luck without medicine than some people are having while on medicine.. It just doesn't add up you know?

Sorry about the long response time with the original post. I can be a slow-poke....

Thank you Dusty, for answering her question.

Even though you dont pay for doctor visits in Canada, it is still hugely annoying to get a doctor you are not pleased with and even worse if they will not even give you the time of day. Your health is so importand and so valuable that your doctor should do everything he can to help you. This includes helping you to understand your test results, options, etc.

I feel like giving you this treatment suggestion before having a proper diagnosis is kind of cruddy too. Did he even bother to test for other possible causes of your symptoms (ie pathogenic microbes,etc.)? Certain treatments can make symptoms of an improper diagnosis worse.

I hope you can do as well off treatment as you do while taking them. Meds arent something to take lightly. People are constantly having serious reactions and interactions with their medications. In addition, we are constantly discovering new side effects and interactions that we didnt know previously. This is true even for drugs that seem to be mild in their activity. Thalidomide is just one example......

Dont get me wrong. I am most definately NOT ant-drug. I AM, however,
1. Anti- doctors that dont take the time to actually look at your chart to see what other medication you are on before blindly prescribing something that interacts with it.

and

2. Anti- patients that blindly pop random pills into their mouth without even knowing what it is for- just because some MD scrawled it on a piece of paper.

I have seen too many bad results from both.

I think you are smart to question things and do what is right for your body. That being said, sometimes the symptoms that are evident are actually indicative of a more pronounced disease state. Based on the four sentences your doctor actually wrote, your condition is probably not in the "mild" category. Unfortunately, when the immune system spirals out of control it can really feed on itself to get far worse very quickly. Also, I am concerned that you have a family history of cancer. I am so sorry about your father. Research has shown that a chronic inflammatory response can cause changes in normal cells when they are continuously exposed to inflammatory agents. These changes can cause normal cells to become precancerous and cancerous. I would most definately keep watch with regard to that.

Whatever you decide do about the meds as long as you make an educated decision, and not one simply out of spite for your doctor, it will be the right one for you. I would just be open to changing your mind no matter what your decision is initially.
J

 

[KWalker]

DustyKat : My doctor didn't mention any further tests. I would like to have some done but I think in order to do that, it will need to be with another doctor that's willing to do so. As far as the fistula from the scope in 07, from what I've been told that is no longer there. The reason I wanted to do the scope in the first place was to see the whole area, not a part of it. That doesn't really help me.

Judith: I have been properly diagnosed. I was diagnosed when I was two years old. I've been on the meds listed in my signature (Remicade, Humira, Methotrexate, Prednisone, etc. if you're on a phone and it doesn't show). I've just found a new doctor because I moved quite a distance from my old doctor so I needed one closer. He has NOT done any other testing and doesn't seem interested in doing so either.

I am doing just as well (if not better) without meds as I was on meds before. The reason I say "if not better" is because I feel the exact same physically and now I don't have the side effects as I did while on the meds so now I don't get the fatigue, headaches, etc. I always had the diarrhea even while on the medicine so that hasn't changed, I don't get stomach pain, etc. which is (like you said) the reason why I'm not jumping on the medicine train without doing the proper steps before hand. I would truthfully love to go on a medicine that I know will fix the inflammation and (although I can't benefit physically) it could help from making things worse. With that being said though, I don't think Imuran is the best fit for that and I think the same goal can be achieved using safer drugs.

I agree with what you said about disagreeing with doctors who don't seem to care, and feeding your body with pills without the education and that's how I look at it as well. I think to myself "Okay this medicine could fix this, but by doing so it could cause this" You have to weigh out those option. What's worse, crohns or cancer? Cancer obviously. As low as the risks may be, they're still present.

You said my disease probably isn't in the mild category. Is that suggestion it is serious? I just have a hard time understanding that because I feel I would feel much worse than I actually do. I know I've said it a million times now but I just don't understand how I can feel much better than people that are taking medicine. Would that make their crohns even more severe than mine? Do you understand what I mean? There's a lot of people on here taking medicine and still with a lot of pain and other problems. I just feel like mine would have to be even worse than there's if mine is severe and I'm not on medicine. I hope that makes sense.

I'm aware of the increased risks of cancer because of the family history and was hoping to get more answers regarding that with my scope results. Instead I received no answers and was on my way. To me it would be worth it to go through the prep again to have another scope and go all the way this time. I don't know how far they can actually go but I feel like 60cm isn't nearly enough to get accurate answers. That's only a small part.

I don't have my mind set on anything at the moment. I would love to take some sort of preventative maintenance medicine to control the inflammation, get it down and prevent it from coming back.

 

[DustyKat]

I understand what you are saying about your symptoms and disease activity and that's exactly why it does become so confusing. Some people have little disease activity and yet their body turns somersaults at what little does exist but on the other side of the coin there are people like you K. Assuming your disease is in the moderate to severe range I know of people that have had severe disease and they literally do feel fine. I think perhaps the location and type of disease may influence this as well.

Just something to think and mull over...it may not be the case with you but disease can also be insidious. I am not doubting for one second that you feel the way you say you do but has that become the new normal for you?

Dusty. xxx

 

[KWalker]

I've thought about whether or not it could be something that I've just grown used too and I'm really not sure. I would like to think that's not the case however. I've grown used to the diarrhea (now with psyllium) but I don't find myself taking time out of my day because of a stomach cramp or anything. I'll keep an eye on that over the next few days and see if I feel anything.

In regards to the people with moderate/severe crohns but feel fine, would it be that although their crohns is considered bad, it never really gets any worse because that's what those people are used too? If it's that bad and you don't feel anything could it still lead to say an ostomy or something of that sort? Could one actually go with a severe case and never have surgery?

I have no doubt in my mind that there's stuff going on inside just because that's expected with crohns but could it ever get really bad and still not cause problems?

 

[DustyKat]

As much as I hate to say it I do know of people that have felt perfectly fine and their bowel has been an absolute mess, to the point that surgery was required...

Sarah was not one these people as far as feeling fine goes but even though it was severe pain that brought her to the hospital, she was undiagnosed at the time, there was no indication that when they operated they were going to find what they did.

Depending on the type and location of the disease I do think you can severe disease and not require surgery. As to whether that would be the case for your entire lifetime I don't know. I well imagine that as treatments improve the old adage that 70% of all Crohn's patients will require at least one surgery in their lifetime will reduce.

Dusty. xxx

 

[KWalker]

How do they determine if surgery is needed if the patient doesn't show symptoms? Through a scope? I think I'm going to start having one once a year to keep up on it. Before my last scope which lead to this thread it was a long time in between the one before. Now that I'm getting older and my life is starting I want to stay on top of it.

I couldn't imagine going through what you/Sarah had to go through with being undiagnosed and therefore probably not knowing what was going on but being in that severe of pain. I'm sorry for not knowing but what type of surgery did Sarah have? I thought it said in your signature at one point but nothing is showing up on my phone.

I too hope that treatment options in the future can reduce the surgery rates. My little brother is similar to Sarah's case in the sense that he was pretty much undiagnosed at the time and having extreme pain. They ended up rushing him to the emergency room and (whatever they did to determine it) he had emergency surgery and now lives with an ostomy. The doctors said that if he would have waited just a few more days he might not be here today. They said he had ulcerative colitis. He now also has the UC in his lungs and is having a hard time with breathing and a terrible cough which he is taking prednisone for but before his ostomy surgery he had no idea what he was getting into.

Its crazy how we can all be so different or have these kinds of problems and go undiagnosed

 

[DustyKat]

Essentially yes, if it is the large bowel.

Sarah had a ileocaecal resection, often referred to as a right hemicolectomy. We were lucky, another 24 hours and she would have been lost to us. In Sarah's case she never had a scope as her symptoms did not reflect Crohn's and her imaging and bloods always returned normal results. The only time her WCC was raised was the night before surgery. Her CRP was normal as were her other bloods. She had peritonitis, a ruptured and infarcted bowel and due to the amount of pus present I can only assume at least one abscess. My two's disease mirror each other exactly and yet they both presented very differently. When I said Sarah's WCC was raised (18) and CRP normal with all that going on, well when Matt presented to the ER with a micro perforation and abscess his WCC was 35 and his CRP 352. Neither had a temperature...go figure. (((sigh)))

I'm so sorry to hear about your brother. I hope the Pred settles things down for him.

It certainly is one crazy and bloody frustrating disease! :voodoo:

Dusty. xxx