My Story

[motheroftwins]

Hi my name is Suzie and been dealing with severe diarrhea since 1993. A little of my story: when I was a baby I had Pyloric Stenosis, then later, peptic ulcers during my teenage and young adult years. When I started having D I just thought it was normal and didn't really think about until I was doing it 10 to 15 times a day and started bleeding with abdominal pain. This scared me and I didn't want to go to the doctors because I was really embarrassed and didn't want to talk about it. My husband got so mad at me he dragged me to the doctors because I was keeping him awake at night because I kept having to go to the BR.

My GP set up an appointment for me to see a GI dr. All my blood work and stool came back normal except I had elevated white blood cell count and rectal bleeding. She wanted me to have a colonoscopy but I couldn't because I had no more money after the stool and blood work. It has been 2 1/2 years since that appointment now I have fevers, weight loss, rectal bleeding, severe diahhrea, and now... fissures. I just had another appointment with my new GI and he tried to do the finger exam but I was so swollen with fissures. He had to stop and decided not to do the sigmoidoscopy that he was going to do in his office. He said I was too inflamed and said, I have IBD but doesn't know which one and can't diagnose it. My colonoscopy is scheduled on Sept 13, he gave me Vicodin and proctofoam for the pain and swelling.

I am scared you guys... And the more I worry the worst I feel. I am all confuzzled. Thanks for listening... Any advise, suggestions, support??

 

[mikeyarmo]

Welcome to the forum Suzie!

Many of us (including myself) were embarrassed and scared about our initial symptoms or even about our current situation so I hope you do not feel like you are alone feeling that way.

It is good that you got a colonoscopy scheduled as that seems like it will provide more conclusive results. I fully appreciate how scared you are as I went through similar fear and worry leading up to my diagnosis myself. For the next week try your best not to stress or over exert yourself. I am not sure if you have found any foods make the diarrhea symptoms better, but try to stick to those foods and stay away from things that cause you the most trouble.

Stay positive and realize that the results of the colonoscopy will likely help you get closer to finding a way to control your symptoms and get back to normal. I know it is a scary thing to go through, but I assure you that it is a fairly common procedure and is nothing to be scared about. Your doctor has likely performed hundreds if not more colonoscopies so you are in good hands and have nothing to worry about.

We are hear for you throughout though. Feel free to ask any questions you have as the community here is really knowledgeable and supportive of fellow sufferers.

Take care and keep us posted on the results of the colonoscopy/

 

[motheroftwins]

Welcome to the forum Suzie!

Many of us (including myself) were embarrassed and scared about our initial symptoms or even about our current situation so I hope you do not feel like you are alone feeling that way.

It is good that you got a colonoscopy scheduled as that seems like it will provide more conclusive results. I fully appreciate how scared you are as I went through similar fear and worry leading up to my diagnosis myself. For the next week try your best not to stress or over exert yourself. I am not sure if you have found any foods make the diarrhea symptoms better, but try to stick to those foods and stay away from things that cause you the most trouble.

Stay positive and realize that the results of the colonoscopy will likely help you get closer to finding a way to control your symptoms and get back to normal. I know it is a scary thing to go through, but I assure you that it is a fairly common procedure and is nothing to be scared about. Your doctor has likely performed hundreds if not more colonoscopies so you are in good hands and have nothing to worry about.

We are hear for you throughout though. Feel free to ask any questions you have as the community here is really knowledgeable and supportive of fellow sufferers.

Take care and keep us posted on the results of the colonoscopy/

Thank you Mark for your support and understanding... It is very much appreciated. I am having a hard time today in some pain because of my fissure. Dr. gave me some Proctofoam HC but it doesn't seem to be working to good. Ouch. Your question about trigger foods. I have been keeping a diary for a long time. I just can't pin point because no matter what I eat I always have diarrhea. Lately I have been eating rice and chicken plus green beens... it helps a little. If you have anymore suggestions that would be great? Thanks again for your wisdom.

 

[KristinaB]

I was so scared and embarrased that I didn't see a doctor for the first 2 years that I was experiencing severe D. I think many feel that way. I'm sorry to hear you are still suffering with symptoms. I hope you find relief soon.

 

[motheroftwins]

I was so scared and embarrased that I didn't see a doctor for the first 2 years that I was experiencing severe D. I think many feel that way. I'm sorry to hear you are still suffering with symptoms. I hope you find relief soon.

Hi Kristina, Going to the doctors was probably the hardest part for me and then going to my GI doctor. I had two GI doctors so far... I wish I did the colonoscopy two in a half years ago but I had no money at the time. This time Greg's boss is paying for it.

I am having more pain today and I am bleeding more from my bum... and throwing up a little blood. I am a bit scared... I have been eating nothing but chicken and rice these past two weeks...oh, and broth in the morning... Nothing seems to stop my D... I am ready to pull my hair out.

Thanks Kristina for your support.

 

[motheroftwins]

Starting my prep tomorrow and clear liquid diet tonight after dinner.

 

[motheroftwins]

Hi undiagnosed club, Ended up going to the ER Friday due to severe pain.... They ended up doing a CT and found active Colitis... Spoke to the ER nurse today for more detail on CT scan and Biopsie report. On CT they found several scattered Hemangoma on liver a cyst on Right Overy, active Colitis in colon and leasions. Biopsie Hyalinized Colitis and Collagenous colitis and my tissue wall is breaking down in the colon. All my blood work came back normal even my White Blood count and I was surprised because that is usually elevated. Anyway can someone please explain what all of this means... I have been diagnosed with Colitis with IBS and right now I am a little confussed.

* Oh, negative dysplasia
Thanks Suzie

 

[David]

Hi Suzie,

Here's information about your liver hemangiomas.

I don't know what hyalinized colitis is. Maybe Aussie does.

Collagenous Colitis is a form of microscopic colitis. I am diagnosed with something very similar (or possibly even the same depending on who you speak to) called Lymphocytic Colitis.

 

[Aussie]

Thanks David, Hi Suzie.

Interesting history. Hyalinization of the lamina propria (glass-like change in the cells in one of the layers of the colon wall) is typically found in colonic ischaemia, also can commonly be misinterpreted as microscopic colitis.

Colonic ischaemia is usually a fairly acute event in older people with vascular disease, and also younger women of the combined contraceptive pill. Presents with severe abdominal pain, followed a few hours later with bright red rectal bleeding. However, there are a small proportion who can go onto chronic colonic ischaemia with bloody diarrhoea and weight loss.

Given the inflammation seen on CT and also on the colonoscopy and the rectal bleeding, I would think it would be very unlikely to be microscopic colitis (collagenous or lymphocytic colitis).

Suzie, your history would be much more typical of a type of IBD rather than microscopic or ischaemic colitis. Would you able to get a more detailed report of your colonoscopy (in particular, the distribution of inflammation and what it looked like) and biopsy findings.

Best wishes.

 

[motheroftwins]

Thanks David, Hi Suzie.

Interesting history. Hyalinization of the lamina propria (glass-like change in the cells in one of the layers of the colon wall) is typically found in colonic ischaemia, also can commonly be misinterpreted as microscopic colitis.

Colonic ischaemia is usually a fairly acute event in older people with vascular disease, and also younger women of the combined contraceptive pill. Presents with severe abdominal pain, followed a few hours later with bright red rectal bleeding. However, there are a small proportion who can go onto chronic colonic ischaemia with bloody diarrhoea and weight loss.

Given the inflammation seen on CT and also on the colonoscopy and the rectal bleeding, I would think it would be very unlikely to be microscopic colitis (collagenous or lymphocytic colitis).

Suzie, your history would be much more typical of a type of IBD rather than microscopic or ischaemic colitis. Would you able to get a more detailed report of your colonoscopy (in particular, the distribution of inflammation and what it looked like) and biopsy findings.

Best wishes.

Thank you David and Aussie for the information very much appreciated. Hi there Aussie, I don't have the report yet but I did get the info from the ER nurse and my GI dr. over the phone. Colonoscopy showed inflammation in the rectum and they took 2 polyps and did biopsies and all biopsis showed Microscopic Collagenous colitis? However, in the ER when they did the Cat Scan it showed Inflammation in my entire colon and in my small bowel. The GI surgeon Diagnosed me with severe Collagenous Colitis and put me on Prednisone yesterday. The ER nurse mentioned the Hyalinization colitis and my GI dr. never did. I think the rectal bleeding is from the fissures I have? However, nothing was mentioned about me losing soooo much weight.
I am going to get a second opinion just because my symptoms are not adding up with MC. Thank you again for your help David and Aussie, Suzie

 

[motheroftwins]

My doctor just called and is putting me on a strict diet... Yuck! liquids for a week, ewww. Then I am supposed to introduce different foods, slowly: gluten free and lactose free.
What am I supposed to eat?

 

[David]

Thank you Aussie!

Suzie, as I mentioned in your other thread, I don't think it's collagenous colitis either. Or if it is, there's something else going on as well. I think that second opinion is a great idea and the sooner, the better. If you can get your colonoscopy and biopsy report, I'd love to hear what Aussie thinks of it.

As for diets that would coincide with what you've been prescribed, I would research the paleo diet and specific carbohydrate diet.

 

[motheroftwins]

Hi David, just out of curiosty what do you think I have? I see my GI dr. 9/25 so I'll get the report then. I hope? My GP is looking at the CT scan and Colonoscopy so I am hoping to hear from her soon. Probably sometime next week..
Thank you for the Paleo diet much appreciated.

 

[David]

I don't know but you have symptoms that aren't explained by microscopic colitis.

 

[motheroftwins]

Hi David, my GP (In another County) just called and she agrees with my GI doctor (Here in the Napa Valley) that I do have Collagenous Colitis. ( it showed up in all biopsies) So, I am going to go with my Diagnoses. Thanks for your help

Suzie

 

[David]

You may very well though all the GP did was read the report, I wouldn't consider their take a second opinion unless they have a deep understanding of IBD. What I think (and I believe Aussie does too but don't like to speak for others) is you have symptoms that are not associated with Collagenous Colitis that need explained.

What I would ask your GI is what they feel the visual inflammation and changes to the bowel and rectal bleeding is caused by. Or better yet, get all your records sent to a GI that specializes in IBD and see what they think. If they say just Collagenous Colitis too, that's great. If they want to run some more tests to make sure, that's great too. I just want to make sure you get the care you deserve. I read countless anecdotes on here and elsewhere about IBD and everything you've said has me feeling a little uneasy about your diagnosis.

When I had my colonoscopy my intestines looked completely normal. When I had my CT scans, they were completely normal as well. I was going to be diagnosed with IBS until the biopsy results came back and said microscopic colitis.

 

[motheroftwins]

Hi David, I feel like I have been on this *crazy train* for a long time and I am emotionally exhausted. My brain is spinning a million miles minute, my husband and I feel like we have just fought a war to get me diagnosed. It has been 2 1/2 years since my first GI doctor wanted to do a colonoscopy on me. This was back in 2009, but Greg, and I couldn't afford it at the time. To be diagnosed two and a half years later, was such a relief for me, and I totally agree with you. I should get a second opinion, but unfortunately, I can't afford one. To be honest, I think I have Crohns but my biopsies tell otherwise, and I am okay with that, for now. I see my GI doctor on September 25th the day after my 41st birthday, and that is when I'll actually get my colonoscopy report, and I'll have better answers to the questions, I have been rolling around in my head. You don't know how much I appreciate your support and caring nature... I will be keeping you posted, sometimes I need a good kick in the butt. I think you should be a dr. because you have such an understanding on IBD and what people go through to get a proper diagnoses. *Hugs* Suzie

 

[David]

Hi Suzie,

I completely understand how you feel and I always am weary of questioning a diagnosis as I know how hard they can be to come by and how much of a relief it can be to have one. The last thing I ever want to do is add to that exhaustion and I am so sorry if I've done that

It always breaks my heart to hear that financial issues are interfering with the medical care people deserve. It's terrible that has to be one of your considerations.

The good news is now you can start treatment! Yay! We're here to help in any way we can

 

[motheroftwins]

Hi Suzie,

I completely understand how you feel and I always am weary of questioning a diagnosis as I know how hard they can be to come by and how much of a relief it can be to have one. The last thing I ever want to do is add to that exhaustion and I am so sorry if I've done that

It always breaks my heart to hear that financial issues are interfering with the medical care people deserve. It's terrible that has to be one of your considerations.

The good news is now you can start treatment! Yay! We're here to help in any way we can

Oh no, you haven't added to my exhaustion, just the opposite, really... Your helping me to fell my tank so I can better advocate for myself!:thumright: I personally don't know what I would do without this forum. The more list of questions I have and the more questions my friends on the forum have and the more studing I do. The more inner strengh comes rolling in. It does suck with fiancial issues interfering with my health.
I am on Prednisone 40mg first week, 30mg 2nd, 20 mg 3rd, 20 mg 4th, then I stop... Then I'll go on a maintenance drug Sulfasalazine. So, it is good I have started treatment. Is this a normal treatment for MC??

 

[David]

Usually prednisone is more of a last resort for microscopic colitis. There are certainly much more benign treatments out there though in your case, I don't think the prednisone is an absolutely terrible idea. Here's a little reading for you.

A friend of mine just wrote a book on microscopic colitis found here. He's a bit more alternative/dietary minded and a pretty smart guy. I haven't found time to read the book yet but am staring at it on my desk. If you want to beat me to it, I'd bet that it would offer up some suggestions that would be beneficial. Or you can wait for my review

 

[motheroftwins]

Usually prednisone is more of a last resort for microscopic colitis. There are certainly much more benign treatments out there though in your case, I don't think the prednisone is an absolutely terrible idea. Here's a little reading for you.

A friend of mine just wrote a book on microscopic colitis found here. He's a bit more alternative/dietary minded and a pretty smart guy. I haven't found time to read the book yet but am staring at it on my desk. If you want to beat me to it, I'd bet that it would offer up some suggestions that would be beneficial. Or you can wait for my review

Wow! I really want to get this book, I am going to try to order it on Friday. Super excited they have a book on MC and he is your friend, how awesome is that. I also like the idea he is alternative/dietary minded! Thank you for the reads... It is kind of funny they put me on a more agressive apporch, right away. I am starting to wonder if the GI doctor is questioning his own diagnoses.

 

[motheroftwins]

I just read something interesting to confrim what Aussie and Dusky was suggesting a more typical IBD... Hyalinization in the colon is usually Crohns and they mistake it for MC. Hmmm, I wonder??

 

[David]

Can you link me to where you read that please?

And yes, Aussie and Dustykat are wicked smart people. I make sure to read every post they make and am forever learning from them.

 

[motheroftwins]

Hi my 15 year old girl/boy twins are home sick today. They went on the computer without my knowlege and now I can't find the pathology report I was reading anywhere. I am so sorry. *blush* I'll keep looking for it...

 

[DustyKat]

Just a word from from own personal experiences, well as personal as they can get when you don't have IBD! :lol:

I have been once bitten twice shy due to the journey I have had with my children. You are coming from the perspective of having a diagnosis and we were not at the time but my daughter had symptoms of something, not *classic* Crohn's, and her results repeatedly returned as normal and so went undiagnosed for 18 months. I no longer believe a test result unless it matches what I see in front of me, that is just me though.

As to your biopsy results and the resultant diagnosis, they may well be spot on although they don't appear to gel. My son was different to my daughter, his imaging and blood results showed every little thing, however no scope or surgical pathology supports his diagnosis of Crohn's. He was diagnosed, both by the GI and surgeon, based on the visual appearance of his bowel and the presentation of his symptoms and complications.

What I am saying is, if what you are experiencing does not match what you are being told then continue to push for answers.

Dusty. xxx

 

[DustyKat]

Is this what you were reading?...

The lesions of Crohn's disease may undergo spontaneous healing.94 In these cases a confusing histological picture is produced with hyalinised granulomas and little or no inflammation.

http://jcp.bmj.com/content/44/9/726.full.pdf

Dusty.

 

[motheroftwins]

Is this what you were reading?...



Dusty.

Hi Dusty no I was reading something else... I can't find it. I got a call from Client Oley (Here in Napa Valley), about my Colonoscopy and I am so angry. Sorry, but I am going to vent. They said, colonoscopy looked normal except for inflammation in the rectum area and a Polyps and Biopsies are still pending (Which is not true my GI doctor gave me the results). They completely ignored the CT scan that they gave me in the ER and denied ever saying I had inflammation in the small bowel/colon area. I called them a bunch of liars and told them to call my GI dr. and regular dr. in Santa Rosa. Good gwads, I was soooo pissed. I truely didn't mean to loss it, but a girl got to do, what a girl gots to do. Then they said, Oh you just have IBS and not to worry about inflammation of the rectal area The dr. will see you on Oct. 8th. Oh my goodness I exploded I am so embarressed and ashamed of myself. I guess my GI dr. put me on prednisone for IBS :mad2:

 

[DustyKat]

That sucks!

It's no wonder you lost it! And I wouldn't be remotely embarrassed about it, otherwise I would be walking around in a constant state of embarrassment! :lol:

Thinking of you, :hug:
Dusty. xxx

 

[motheroftwins]

That sucks!

It's no wonder you lost it! And I wouldn't be remotely embarrassed about it, otherwise I would be walking around in a constant state of embarrassment! :lol:

Thinking of you, :hug:
Dusty. xxx

Hi Dusty, my GI doctor took care of that conversation... So, everyone could be on the same page. I am still waiting for the Prednisone to kick in and start giving me some relief.

 

[motheroftwins]

Update: Started Sulfalazine 500mg 4x a day and Entocort 6mg while tapering off Prednisone. Going to UCSF (treatment center) in November for consultation and second opinion. I am hoping all goes well. Starting to feel anxious like I can't sit in my own skin and depressed. The whole waiting game is truly starting to get to me.