Share Facebook
Crohn's Disease Forum » Support Forum » Undiagnosed Club » Scheduled again for colonoscopy / biopsy


05-01-2012, 02:54 AM   #1
akduck
Senior Member
 
Join Date: May 2012
Location: Alaska
Scheduled again for colonoscopy / biopsy

I have been "lurking" and reading for a few weeks, and thought I'd join in.
I am 58, and in pretty good health (or thought so!)
In the summer of 2007 I started having bad D - was in a very stressful time. I had a colonoscopy that showed I had diverticula, but not to bad. D continued off and on from then to now. I had a bad bought with diverticulitis in Nov 2009. In Feb of 2010 I was tested for Celiac - negative. Went off all dairy for a couple of weeks and the D went away! Diagnosis - lactose intolerant. That seemed like an easy fix, and I was happy with it.... but then off an on I would have abdominal pain and D. I kept thinking I must have got some dairy and not realized.
Week after Christmas 2011 I felt really bad - a lot of spasm type pain in my stomach - out of the blue it would feel like someone hit me as hard as they could. Saw the dr. on Jan. 3rd and was scheduled for and endoscope. Had that in Feb, and showed a hiatal hernia, Barratt's Esophagus and no H pylori. Was then scheduled for a colonoscopy in March. Three days before I was to have that I ended up in the ER with diverticulitis. They did 2 CT scans, and said there is an area of suspected Crohn's. The colonoscopy was rescheduled for May 7th.
On April 10th my abdomen started hurting at 3pm. The pain increased fast and bad, and fever of 100, vomiting, and by 8 pm I was in the ER. They did a CT scan, showed total intestinal blockage. I was admitted to the hospital and put on IV prednisone & antibiotics, and given pain meds as needed. On the 13th I was feeling much better - no pain, but still D. They did another CT scan - showed an abscess and still the area suspicious for Crohn's.
The surgeon said that all he could do is operate to remove the abscess, but he does not like to operate on people who have or may have Crohn's - he said any time you can avoid a surgery you should. He said I needed to go to UW Medical Center in WA, where there was a very good chance they could drain the abscess and avoid surgery.
That night I was medivaced to Seattle and taken to UW Medical Center. I spent 5 days there. They were not able to get a drain in the abscess, and they also did not want to do surgery. they are hoping with meds the abscess will self resolve. After a total of 8 days on IV antibiotics and prednisone, I was able to go home on oral meds and a low fiber / low resolution diet. 16 days total on antibiotics, and I don't know when I will come off the prednisone.
I have appointments with a GI in Anchorage on May 8 for an initial visit, and on the 9th for the colonoscopy and biopsy. I am keeping my fingers crossed that nothing else goes wrong and this will get done!

I appreciate reading all of the comments on these boards. I know that at my age I am late coming into IBD. I am finding so much good information, and really enjoy the humor, too.
05-01-2012, 03:13 PM   #2
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
Hi Akduck, welcome to the forum and the club. So if I read your post right, you're currently on prednisone with no plan in place to taper off of it, and you're having a colonoscopy soon? Honestly, it'd probably be best to get off the pred ASAP and maybe push back the c-scope. Prednisone does a great job of healing inflammation quickly and masking anything that might be seen on the scope. In other words, it really won't pay to do the scope while on pred because it's highly likely that everything will look normal due to the pred. At the very least, call your doctor and ask about this. I'd hate for someone to go through colonoscopy prep (easily the worst part of the whole procedure) all for nothing. As silly as it sounds, the sicker you are when you have the scope, the more likely it is that something will be found.

I'm in a similar situation, I'm undiagnosed but my GI put me on meds (pred, then Entocort, and now Asacol) to get my illness under control. As a result, I am now in remission. But, I can't have further tests right now because nothing would be found because I'm on meds and in remission! So it's kind of a catch-22, if you're on meds you'll feel lots better but will likely remain in diagnostic limbo indefinitely (at least until you flare up/feel worse again).

Whatever you end up doing, staying on meds or having the scope, I wish you the best of luck and please keep us posted on how you're doing. I hope you get both answers and relief soon! And again, welcome.
05-01-2012, 09:34 PM   #3
akduck
Senior Member
 
Join Date: May 2012
Location: Alaska
Cat - thank you for telling me about the prednisone / scope issue. I will call the GI in the morning and ask about that.
I am on the prednisone for the abscess, but I see it also could suppress any Crohn's that was there. I am 175 miles away from the GI, and have to go the day before an spend the night, so that makes your advice even more important for me!

I am glad that you are being treated and doing better, even without a diagnosis. I will update what the GI says about the scope.
05-03-2012, 07:41 AM   #4
akduck
Senior Member
 
Join Date: May 2012
Location: Alaska
Ok, I will have the appointment on the 8th, have some lab work done and get going on checking vitamin levels, etc., and most likely go ahead with the colonoscopy on the 9th - even on the Prednisone I am having bloody stools and the dr. feels that with what has been going on and what the scans have shown over the last few months it will be a good idea to have the scope and biopsies. I something comes up at the appointment on the 8th, we can cancel the scope.
05-03-2012, 08:05 AM   #5
marjaw
 
marjaw's Avatar
 
Join Date: Apr 2012
Location: muskego, Wisconsin
Akduck
I know how you feel starting the whole Crohn's trip later in life. I got my diagnoses at 51 a few months age and just started the prednisone taper after a hospital stay for a partial obstruction. My GI is the same "avoid surgery at all cost" type of guy. From what I can tell they know so little about this disease and it's so individualized that it sometimes takes awhile to find the right meds/diet/lifestyle that works for you. Very frustrating and scary but I'm just trying to go with the moment and try not to let the "what if" demons get to me.
I hope you continue to heal and your colonoscopy goes well (as well as they can, the prep is definately the worst!)
Keep us posted and just think that if we're starting this at our age we must have been through something worse.....but we just don't remember
__________________
Crohn's Ileitis diagnosed Dec 2011
SBO 12/2011, 3/2012, 8/2012
Psoriasis since 1961
Psoriatic arthritis since 1988
Currently on Predinsone 40mg starting step down 9/5/12
Started Humira 4/25/12
05-03-2012, 08:26 PM   #6
akduck
Senior Member
 
Join Date: May 2012
Location: Alaska
Marjaw
Thanks for the reply. I have dealt with a couple of bad bouts of divericulitis over the past 5 years, but that was nothing compared the the total obstruction and abscess that landed me in the hospital last month!

I feel so fortunate to have found this website and this forum! So many people who have a lot of experience and are happy to share - makes me feel a bit better about going through this. I was happy with the surgeon's attitude, and a little surprised when he said he didn't want to operate! But so grateful, too.

I am reading up on diet, vitamins / supplements/ treatments etc, on here, and making a list of stuff to ask when I see the GI next week. I am looking forward to having (hopefully) a diagnosis and getting on with some treatment! I agree - it's scary and frustrating. I am sure we will have more than enough of that as we figure out what does and doesn't work for us! Not the journey I was planning at this stage of my life, but here I am! I agree, the "what if's" are a waste of time.... so kick them down when they peek out at you!
Update how your meds are doing, and how coming off the prednisone goes for you.

Akduck
05-12-2012, 01:23 AM   #7
akduck
Senior Member
 
Join Date: May 2012
Location: Alaska
Just wanted to update - My Dr. visit went well on Tuesday, and had the colonoscopy on Wednesday. They did 11 biopsies - 8 were polyps and 3 were ulcers at the terminal ilium. Should have the results back late next week and will come back and update again.

The GI (Dr. Valantas) said he would be surprised if the biopsies do not show Crohn's. I just hope it shows something so we can get on with dealing with it!
05-12-2012, 07:41 PM   #8
dannysmom
Forum Monitor
 
Join Date: Oct 2010
Location: NY

My Support Groups:
It sure does sound like you will have a diagnosis soon. Hopefully then you will have treatment to feel better! Thanks for sharing your story.
__________________
Jeanne
Mom to Danny (16), sick since Dec 2008 but current diagnosis uncertain.

(Danny's story)
05-13-2012, 07:16 AM   #9
marjaw
 
marjaw's Avatar
 
Join Date: Apr 2012
Location: muskego, Wisconsin
akduck
Glad to hear the testing went well. My taper on the prednisone is going ok so far, although I'm only down to 30mg. Second dose of Humira was fine. No reaction other than the shot hurt more this time :-). We arrived in Florida for vacation yesterday! Travel wasn't too bad (I always get bad stomach upset when I fly - fear). Had some pain but today feel pretty good, fingers crossed it stays that way :-)
05-13-2012, 04:32 PM   #10
Astrid
Member
 
Join Date: May 2012
Location: Nijmegen, Netherlands
Hi AKduck, I'm glad the testing went well and you're being taken seriously. I'm sorry you're having polyps along with the ulcers. Finges crossed they are benign. Hoping for you that you get the proper care soon.
05-14-2012, 01:14 AM   #11
akduck
Senior Member
 
Join Date: May 2012
Location: Alaska
Thank you all for your encouragement! This forum really helps
Marjaw, have a wonderful vacation! I work for an air taxi service here in Alaska, and I love to fly! (As the passenger, of course) - the smaller the plane, the happier I am.
The dr plans on starting me on some new meds once the results of the biopsies are in, and I am starting to wean off the prednisone next week. I am at 40 mg right now. He is hoping as I come off it the abscess won't act up - really hoping it has reabsorbed - if it does act up, then the likelyhood of surgery will be waiting.... sure hope to avoid that!
05-16-2012, 09:19 PM   #12
akduck
Senior Member
 
Join Date: May 2012
Location: Alaska
Well, got the results of the biopsies today... it is Crohn's. So I guess I don't belong in the "undiaganosed club" anymore.
I will now take 50,000 IU of vitamin D once a week for 8 weeks, then will change to 2000 IU of D3 daily, need to get some vitamin B12 shots - don't know how often - my primary will do those, so have an appointment with her. I will get the lab reports with numbers from my primary - didn't think to ask for them. Will take some calcium and other vitamin supplements, too.
Also setting up an appointment with a nutritionist - I will admit my eating habits have be pretty atrocious. Always joked I had an "iron stomach".
The polyps - some were hyperplastic and some were adenomatous, so when I see the GI in a couple of weeks will find out more about those.
I am continuing the prednisone taper, and will start whatever the GI recommends at the next appointment.
I will be researching like crazy till my next appointment, and any advice would be greatly appreciated. I am trying to compose a list of questions to ask the dr., but I am sure I will miss something. I feel like my diet will be most important - trying to balance a low fiber diet for the Crohn's and then the diverticulosis wants high fiber.... should be interesting!
thanks to all of you for your support. Having a bit of a surreal moment here this evening!
05-16-2012, 09:47 PM   #13
StarGirrrrl
Moderator
 
StarGirrrrl's Avatar
 
Join Date: Sep 2010
Location: UNITED KINGDOM

My Support Groups:
I'm sorry it's Crohns, but glad at least you got an answer.

As for questions to ask you GI, i'm afraid we're not in the best position to answer here- why not try the General IBD section of the forum?

I will keep an eye out for your posts on the other boards to see how you are getting on
__________________
2006. Tummy issues (more IBD than IBS).
2009 joint pain/worsening tummy issues.
CRP 20-36 2006-now. C3/C4 inflammation markers huge,
2014 IDA & low B12.

June 2014 admitted to Hospital 3 nights as emergency transfused 2 units of blood. Dangerous case of anaemia.
Caught by pure chance!
Cause currently unknown but suspected CD.

Waiting on blood & stool results from January.

Hoping to stop anaemia treatment soon & lower B12 daily dose!
05-16-2012, 10:46 PM   #14
akduck
Senior Member
 
Join Date: May 2012
Location: Alaska
Thank you StarGirrrrl! I will put a post over there.
05-17-2012, 06:51 AM   #15
marjaw
 
marjaw's Avatar
 
Join Date: Apr 2012
Location: muskego, Wisconsin
I'm glad you got some answers even if they are not what you wanted to hear. My GI keeps twlling me it doesn't matter what I eat, if the inflammation is there it will be a problem, no inflammation not a problem. I am going to ask about my D and B12 levels next time I see him though. I don't know what they are or if he tested.
Vacation was going well except for yesterday. Had to stay in the condo most of the day to be near the bathroom :-(, Didn't feel too bad since it was cloudy and rainy all day! Hoping the last couple of days go well.
Feel better!
05-17-2012, 08:42 AM   #16
StarGirrrrl
Moderator
 
StarGirrrrl's Avatar
 
Join Date: Sep 2010
Location: UNITED KINGDOM

My Support Groups:
Your more than welcome akduck

As you have now posted for advice on the General IBD forum, I will lock this topic. That way, anyone from here who has been looking out for your news can still see it.
Closed Thread

Crohn's Disease Forum » Support Forum » Undiagnosed Club » Scheduled again for colonoscopy / biopsy
Thread Tools


All times are GMT -5. The time now is 02:42 PM.
Copyright 2006-2017 Crohnsforum.com