Terrible 24 Hours...

[whyclef]

I am still "undiagnosed" but in the past 24 hours, my symptoms have pointed more towards IBD- Crohns. Started having persistent D at 5:30pm (Central Time) last night and it has not yet let up, approaching the 24 hour mark. Shortly after 8pm called GI because blood starting showing up in stool and mucus. He said I needed colonoscopy which was already on the books for Monday 01/09. Told me to go to ER if blood turned toilet red or if I felt lightheaded.

Started feeling lightheaded around 1:00am and had golf ball size clots of blood with mucus, so I went to the ER. ER gave me Morphine and Reglan which stopped the awful cramps and frequent trips to the bathroom. All labs were normal (no anemia) and stool sample was taken showing visible blood. Sent me home feeling better because morphine had taken effect. After morphine wore off, cramps and diarrhea with more blood (lighter this time). Afterwards took Vicodin and Phenegran which knocked me out for a few hours. Once meds wore off I was back to more D with blood. No fever or signs of infection/sepsis. GI doc decided it was best to direct admit me to hospital where I am now, in light of my symptoms and 30lbs weight loss since August. Starting partial bowel prep shortly for expedited colonoscopy in the morning. Overall I feel ill and am praying that a diagnosis (other than IBS) comes from this unexpected hurdle.

At the same time my wife is dealing with Sphincter of Oddi Dysfunction and a sphincterotomy which has left her with pain and nausea. All of this has put a lot of stress on our family, especially with a 3.5 yr old daughter and 1.5 yr old son. Thankful for a strong network of friends and family, but also thankful for everyone on this forum. We would appreciate your prayers for diagnosis and healing.

Whyclef

 

[cb323]

Hi Whyclef,
Sorry to hear that your symptoms have become so severe. I hope that you get the treatment that you need to start feeling better soon. I had follow appt today and was schedule for another pill cam. He also wants to do a double balloon endoscopy. Do you know anything about this test? Please keep us updated on your hospital stay and colonoscopy.

 

[David]

Hi Whyclef,

Bummer, I'm so sorry to hear you've been having such a rough time. And your wife is having troubles too? WOW! *hugs* to all of you.

Keep us updated about your test results. Good luck and let's hope they get things figured out fast.

 

[whyclef]

CB323 -

I've never had the double balloon endoscopy but am aware of it, surprised they offer it in Tyler. I had previously considered going to Baylor Dallas because they perform the test there. It could be a very helpful test if most of the inflammation is limited to your small bowel. Please let me know how it goes...

I'm currently waiting on the prep to do its thing, won't be much longer.

-Whyclef

 

[Angrybird]

Lots of hugs going your way :hug: Good luck for tomorrow and they should at least be able to give you a good indication of what is going on straight away, keep us updated when you can.

 

[tiloah]

CB323 -

I've never had the double balloon endoscopy but am aware of it, surprised they offer it in Tyler. I had previously considered going to Baylor Dallas because they perform the test there. It could be a very helpful test if most of the inflammation is limited to your small bowel. Please let me know how it goes...

I'm currently waiting on the prep to do its thing, won't be much longer.

-Whyclef

Sorry you're dealing with all of this. I hope they find some answers with you and put you on a good course of treatment. I'll be thinking good thoughts for you today.

 

[whyclef]

I had the colonoscopy earlier today with Propofol, so I am now coherent and awake. Colonoscopy was performed by a GI partner of my primary GI doctor, since it was expedited. The colonoscopy showed mild inflammation in the sigmoid region as previously discovered during a 12/13/11 sigmoidoscopy, everything else was non-remarkable. Performing GI said sigmoid inflammation was likely caused by the GoLytely bowel prep. However, during flex sig my primary GI said sigmoid inflammation had been in existence for much longer than bowel preparation. All bloody D was attributed to hemorrhoids per the performing GI.

 

[whyclef]

I was sent home from hospital at 2pm. Only med prescribed is corticosteroid suppository for hemorrhoids. From conversations, primary GI doc and performing GI partner keep pointing to IBS. Yet none of this explains episodes of non-stop diarrhea (20+ times in 24hrs), daily nausea/pain after eating, now 30+lbs weight loss in 4 months, waking from sleep diarrhea episodes, and cramping so severe that it was a 9 of 10 needing ER pain meds to control.

I'm asking for any advice on next steps... Do I go to Mayo Clinic, Cleveland Clinic, or another place like that? I will push for pill cam next, but am fearful the GI doc has already made up his mind since there were no granulomas in my colon, normal TI, and all normal bloodwork. All of these are things he has referenced to support IBS.

 

[Angrybird]

I would defintely get a second opinion, they can't blame a prep for inflammation especially as this was evident on a previous exam! If all docs did that what would be the point to all the colonoscopies etc that get done?

 

[Sbailey]

I went to the Cleveland Clinic after not getting good answers at home. Best decision I could have made. They had me diagnosed after 2 visits! I went to the Cleveland Ohio location.

 

[whyclef]

I went to the Cleveland Clinic after not getting good answers at home. Best decision I could have made. They had me diagnosed after 2 visits! I went to the Cleveland Ohio location.

Is there a physician referral program at Cleveland Clinic to be admitted and put through the riggers of tests OR do you go see each doctor at his/her office? Curious how your time at Cleveland Clinic (Ohio) played out...

 

[Sbailey]

I saw one doctor there, her name was Dr. Su. My family doctor made the initial appointment for me. The first appointment was a consult, I went back for a CT enterography and a colonoscopy, and my last appointment Dr Su gave me the definitive diagnosis of Crohns. Everyone at that campus was wonderful! You can get discounts at the hotels in the area when you book it and tell them you are a patient at the CC.

 

[whyclef]

Unfortunately, the liquid D with frequent urges and ridiculous cramping is already back, blood included (I'm sure some blood is from biopsies). So frustrated the GI discharged me so quickly without even ordering any labs. He had to be thinking, "colonoscopy wasn't remarkable so nothing else could be wrong." I'm noticeably paler than normal with weak legs and tingling fingers. Thinking I need be at the Cleveland Clinic now more than ever!

 

[Sailorluna]

Hi whyclef - I am sorry about all that you are dealing with.
I can tell you that I had a "clean" colonoscopy a few months before I had emergency resection surgery for a blockage in my small bowel. My GI never mentioned that you can not see the small bowel with a scope so nothing further was tested. I was told that I had "IBS" too (even with pain, weight loss and vomiting). I am glad that you are not going to accept what he says without pushing back.

If the GI wont give you the pill cam test I hope you find someone that will. Good luck.

 

[suschex]

Have you considered the UT Southwestern Medical Center in Dallas? I am going to see them in a few weeks for a second opinion on my current treatment. Below is the link...browse around their site. My husband called and made an appointment for me without a referral. They have me scheduled to be seen the first week of February.

http://www.utsouthwestern.edu/patientcare/medicalservices/digestive/bowel.html

I am so sorry you and your family are going through all of this right now. You will be in our thoughts!

Hugs

 

[whyclef]

Have you considered the UT Southwestern Medical Center in Dallas? I am going to see them in a few weeks for a second opinion on my current treatment. Below is the link...browse around their site. My husband called and made an appointment for me without a referral. They have me scheduled to be seen the first week of February.

http://www.utsouthwestern.edu/patientcare/medicalservices/digestive/bowel.html

I am so sorry you and your family are going through all of this right now. You will be in our thoughts!

Hugs

Thank you for the hugs and kind words... I have thought of Southwestern and even called them a month ago but the delay for an appointment was too long. In retrospect I should've made an appointment when I called.

Will look into it again tommorrow morning.

 

[suschex]

Thank you for the hugs and kind words... I have thought of Southwestern and even called them a month ago but the delay for an appointment was too long. In retrospect I should've made an appointment when I called.

Will look into it again tommorrow morning.

When my husband called them a fews days ago, they put me in for March 26th as a place holder and to get me in the computer. I guess this is how they do it for new patients. Once they had my file from my GI they moved me up to Feb 8th when they called today but assured me it was not due to anything other than needing the file and the current dx before knowing which day of the week the doctor sees each type of patient.

Hope that all makes sense...I was a little confused by it at first but then she cleared things up.

 

[whyclef]

GI on call has me taking Hydrocodone and Phenegran to stop the D/cramping and help me sleep.

 

[whyclef]

Nurse from the gastro clinic called today stating that the pathology report from Thursday's colonoscopy revealed Microscopic Colitis. It was definitely not the answer I expected as pathology reports from two other colonoscopies and one flex sig have never revealed much when the colon appeared unremarkable for inflammation.

Still questioning how much bloody D hemorrhoids can produce? As well, can you have some visible erythema inflammation with microscopic colitis or does the colon look perfectly normal?

I see my GI doctor on Monday afternoon to discuss these results, the nurse mentioned that the doctor might put me on the Entocort steroid.

 

[Sbailey]

I think mine said that too but the doctor said it was because of the prep. I am also on Entecort.

 

[suschex]

So glad you are getting some answers. I know it probably doesn't resolve much for you yet but maybe it is the first step to relief and help!

I hope your wife is doing better as well! I think of you both often since we have two young children as well! I can't imagine if my husband was chronically also.

Hugs the all four of you!

 

[Angrybird]

Glad things seem to finally be moving in the right direction and that you do not have too long a wait for the appt. Nice to hear about the Entocort, this is much more preferable than Prednisone. My thoughts are with you and your family and I hope you both start to feel better soon :hug:

 

[whyclef]

Frustrated

Visited with my GI Doctor yesterday and he said the nurse gave me the wrong information, it is NOT Microscopic Colitis. I am frustrated to have been given completely wrong information, my doctor was too!

Instead of Microscopic Colitis my colonoscopy showed non-specific inflammation near the sigmoid region that was also present at my Flex Sig in mid-December. Everything else including the TI was unremarkable. Today, we are back to square one without any answers as I continue to have cramping and diarrhea even on a strong dose of antispasmodics. As well, my weight continues to slide downward.

The next step is another capsule endoscopy (last one was 2 yrs ago) early Wednesday morning, on liquid diet right now and drink 10oz. Magnesium Citrate tonight to prep my bowel.

Praying that I get some answers and treatment. Thanks for all of your support!

 

[Angrybird]

For goodness sake! These people need to be more careful with the info they give out. Really sorry things have taken a backward step, at least they are doing another test though and not just sending you on your way. Keeping fingers crossed.

 

[stardreamer22]

Ugh! So frustrating I'm sure!!!

So this is breaking news...the press release just came out within the past few weeks - so I'm assuming this isn't widely available yet, but it may be worth a conversation with your doctor: http://www.laboratorytalk.com/news/thb/thb397.html There is a brand new test that is supposed to be able to help determine what you actually have.

Sending good thoughts your way!!

 

[whyclef]

Mayo Clinic - Minnesota

My GI has decided to send me to the Mayo Clinic as a next step, he also happens to be Mayo Clinic Minnesota trained. He still has doctor friends at Mayo from his GI fellowship in the mid 1980s that are respected physicians at Mayo. He is making some calls today to get me in sooner rather than later.

Anyone else have experiences at Mayo Clinic Minnesota? Positive or negative... Any advice you would offer?

Lastly, my GI is making this move because the Capsule Endoscopy showed NOTHING. It did not make it past the upper small bowel during the 8hr battery life. As well the test showed food particles and bile blocking visibility. The positive is that the capsule did pass from my colon the next morning. My GI is unsure why the capsule did not pass through the small bowel in 8 hours. He has had me on heavy doses of antispasmodic medication so it could be a motility issue or it could be narrowing of the small bowel.

 

[Angrybird]

Hi there, I am sorry that this test has not given you any answers However I am pleased that your doc is referring you to someone who can perhaps help rather than just sending you home with 'sorry nothing more we can do' speech. Hopefully somone has some info they can give you about this clinic. I will continue to hope that they can get an answer for you soon, as always keep us updated.

NB How is your wife doing? I hope she is on the mend.