Still being diagnosed, but strongly suspect Chrons.

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DougUte

DougUte

Joined
Jul 4, 2010
Messages
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I am in the process of being diagnosed, but my family Dr. has told me that I could have Crohns disease. I was also told 2 weeks ago by a ER doctor that I have Crohns. I was having a flare up, so bad I had to go in to the ER. (first time that has happended in 4 years.) ER doc ran several blood tests, X rays, and a CT scan of the abdomen. He then told me that CT scan indicated it was Chrons Disease. I had a upper GI last Monday, and my Gastroenterologist showed me where ulcers had been found in the lower esophogas. I am scheduled for a Colonoscopy on July 15th, and then for the test where you swallow the camera in a capsule (I can't remember the name) will probably happen after that.

About April 2009 I was diagnosed with another potentially disabling disease, a neurological disorder called Essential Tremor. I have tremors in both hands and both legs. ET is often confused with Parkinsons Disease, but is not the same as Parkinsons. I am 46 years old, and should not be falling apart like this. I know almost nothing about Chrons, so I will be reading the forums and asking a lot of questions.
 
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Hi, Doug, and welcome to the forum. All that at 46 is not fair at all. I have heard of essential tremor and my understanding is that it's fairly uncommon at your age and can really have an impact on your life (and, same for Crohn's). I have a mild form of a different movement disorder, although not one that progresses over time, and it can be very challenging. It must have been a surprise to be new to dealing with ET and then to find out all of a sudden that you likely have Crohn's as well. Lots of info in the forums here and tons of people offering support (and laughter). There are things that can be done to help many of your symptoms, and this is the place to find out ideas for what might work for you. We're glad to have you aboard.
 
:welcome: Doug... so sorry you are going through rough time but at least you won the battle of being potential for a definite diagnoses. Your doctor is being agressive which is good for finding it sooner. I have ulcers in the Illeum, very hard to control for me because I have exhausted all meds available in Canada.

Hopefully once you get all the results in, they can put you on medication to get it under control. Try to stay calm and stay on a low residue diet, it helps. Let us know how your tests turn out, we are here for you and great people to support you and lots of info.

:hang:
 
Kelly, your right, getting the Crohns diagnosis is a real kick in the gut. Sorry to hear about your movement disorder as well. The ER prescribed Cipro and that seems to have kicked the Crohns into remission. I really want to get the Colonoscopy over with. It will be my second so I know what is coming the day before. I have been going kind of nuts reading about surgeries where feet of intestine had to be removed. I would rather avoid that. I just want to get this under control and go on with life.

Jetta Lady, thanks for the encouraging words. I really appreciate it.
 
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Hi, Doug -- Agreed re. wanting to get all the testing done with and to have a handle on what's going on. I am a step ahead of you in that regard...but I'm not ready to think about surgery yet. One step at a time, and for me this summer that means getting symptoms controlled. So much to read about and learn about, so I'm doing it in stages. ;)
 
Hey Doug, welcome to the forum. We are about the same age. Do you also have a family depending on you? I know that can add tremendously to your stress level.

I don't have crohn's, it's my son so I don't know how you suffer physically but I'm sure there's a great deal of emotional weight on your shoulders as well. You've come to a great place to just "let go" of it. Good luck!!
 
Welcome, Doug!

I'm also fairly new in here, and I find so much information and support in here - it is really nice to have a place like this where we can talk freely with other people who understand what we are going through. You must have a lot on your mind, having to deal with both the ET and Crohn's. I can't imagine what it would be like... :( Glad to hear that Cipro made you go into remission, though. I guess us Crohnies have to hold on to the good news. :)

Good luck on the colonoscopy next week! The camera test sounds really fancy, I've never done that. You should let us all know how it goes with the tests!
 
Sophia,

The camera test sounds really cool. There is one area where the Endoscopy and the Colonoscopy cannot get to --- the small colon. That is the area where my CT scan showed I have a problem. To get my insurance company to pay for the camera test I have to go through the other tests first.

The camera is inside a transparent capsule. You swallow the capsule. The camera transmits the pictures to a receiver you wear on your belt. The camera works its way through the small colon and the rest of the digestive track. When finished it is expelled the normal way. You don't have to worry about saving the capsule. You bring the receiver back to the dr's office and they look at the pictures.

The one potential problem for us Crohnies is it gets stuck in a obstruction in the bowel. I guess if that happens they would have to go in and get it.
 
I've heard that they can use a dummy capsule to check for obstructions prior to taking the capsule endoscopy. It dissolves, so it's not a problem if it gets stuck, it just lets them know if there is risk of the actual camera capsule getting stuck.
 
Hi Doug
and welcome

you're going thro it at the mo aren't you? hang on in there, we're the same age and I don't think I'd be able to cope with another disorder on top of this one!
hope you get answers soon and good luck with the pill cam
see you around, any questions, just shoot!
lotsa luv
Joan xxx
 
Wow, I had no idea that the colonoscopy didn't cover the whole colon. :) I hope all the tests go well!

x
 
I think he meant "small bowel." Colonoscopy does the whole large bowel (colon) and then can sometimes get into the terminal ileum, the last part of the small intestine.
 
Hey Doug,

So glad you found us. My daughter has CD and isn't it so overwhelming when you are suddenly presented with something, so much to learn, so much to read, so much to take in but all the better for a diagnosis and being able to bring it under control. You have certainly come to the right place to help you understand this disease 'cause there's heaps of experienced people on here!

BTW - when I read Ute in your name I thought you must be an aussie. :lol:

All the best,
Dusty
 
:sorry: I mean't small intestine or small bowel, not small colon.

The camera will pass through the small bowel and transmit to a receiver you wear on your belt. When it passes it just goes down the toilet.
 
DustyKat

The UTE on the name is because I am a alumnus of the University of Utah (Nickname: UTES). I am also a very happy UTE Fan since my school is joining the PAC 10 Conference in 2011.

Thanks for the welcome.
 
I have got through the colonoscopy prep. The procedure is tomorrow morning. This has not been a very fun day.

My upper endoscopy found ulcers in the lower esophogas.

We'll see what happens tomorrow. I just want this over and to get on some meds to control it.
 
The procedure went this morning with no problems. He took a biopsy to rule out microscopic colitis. I can't remember much about the discussion with the Dr. (still under the influence of the anesthesia). Reading the discharge instructions I see that he took a biopsy to rule out microscopic colitis. It says "otherwise normal appearing colon." He did tell me that the laxatives I took yesterday did not entirely clean out the colon.

There are six labs that I am going to be waiting on. They are Stool WBC, Stool Culture, Stoll Ova and Parasites, Clostridium Difficile Toxin, Stoll Giardia antigen and Cryptosporidium antigen.
 
BTW Doug, this is a ute -

Holden_ute_SS-V_m_m.jpg
 
It looks like a holden club sport ute, that would go like a rocket and be as powerful as. I like Holdens (sorry Ford fans). Welcome Dougute, you know with the ET's I have something similar. I will be 40 next year and I still have small tremors, my dad has big tremors and my grannie, bless her, couldn't pour a cuppa tea from the pot into the tea cup. I have always joked with my dad that one day I will grow up to have the big shakes. I also have restless legs too. Good luck with the waiting, I hope you get all the results soon.
 
It's been too long since I've posted. Here is the update. The colonoscopy did not find anything, including in the terminal illeum of the small colon. My GI was about to declare it as IBS when I asked him if he had seen the CT scan taken in June. He had not. After reading that report he said, It could be Crohn's but not in the terminal illeum. He ordered a lactose intolerance test, a small bowel series (with the icky white stuff to drink), and more blood tests, including a IBD draw.

When I had the small bowel series I was told the test would take 6-8 hours. Well, not for me! The white stuff was in my Colon within 30 minutes of finishing drinking the stuff. I was told I set an all time speed record for this test at Davis Hospital.

Today I met with my GI again. The results of the IBD draw are not back yet, but all the other tests have come back normal, With the exception of the small bowel series - which shows the barium bypassed the majority of the small colon. There is a "large" area of the small bowel that appears diseased. It is the upper port of the small bowel, just below where the small bowel meets the stomach. Part of the diseased section is behind the colon and could not be seen in the flouroscope. My doc thinks there is a fistula between the small and large colons. The only way to make sure is to do a exploratory surgery. I am being referred to a surgeon at the University of Utah Medical Center for a consult. Since the IBD panel is not back, I don't have a final diagnosis yet, but he is about 99% sure it is Crohns.

This scares the hell out of me. Based on what the surgeon recommends I will either have a resection or we will try to see if we can close the fistula through medical means. The GI doc is recommending Humira. Has anybody been on this med? I know it is a biologic so I would go in for IV infusions. How has it worked?

It is nice to finally have an answer and know something can be done. But abdominal surgeries scare me.
 
Hi Doug, it is good that you finally have an answer. At least now you can get some meds to help you out some. I can not answer your question but I am sure someone else will.
Take care and good luck with your meds
 
Wow im sorry for the ordeal but i will say you have an amazing doctor who is so agressive on this and actually getting things done. I hope you get some definate answers soon and good luck! Oh and yes take a look in the treatment thread lots of stuff about all kinds of treatments there.
 
I get to meet with the surgeon today. I am really nervous about this. I guess we will see what happens today.
 
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Hey Doug,

Good luck with the appointment today! Keep us posted on the outcome.....................


:goodluck::goodluck::goodluck:


All the best, :)
Dusty
 
:depressed: Well.... I had my appointment with the surgeon. Yes, I need surgery. He says there is a "Crohns Mass" about the size of a small grapefruit. The surgery will involve removal of the mass - a resection. He may have to remove a portion of the Colon as well as part of the small intestine. He won't be sure until he gets in there to see it.

I'm trying to see this as good news. I know that I will have a chance to feel like a real human again, and maybe I'll be able to stop worrying about where the nearest bathroom is at all times. But I am really scared of life without a complete set of innards.

When the Dr. called it a mass I just about had a heart attack. First thing I thought wasn't Crohns, it was Cancer. He did tell me the chance of it being canerous was almost none, but it really scared me.

The surgery is scheduled for October 12th. I will be out of commission for at least six weeks.

I am not sure how to take this.
 
Hey Doug,

Thanks for the update and I know there will be others along who have experienced exactly what you are going through now.

I felt the same way about Roo with her having so much bowel removed but it was so diseased it wasn't an option for it to stay there and I imagine that is the point you have reached. Unfortunately nothing can ever be ruled out 100% so there is generally a mention of cancer. They certainly mentioned it with Roo with both her bowel issues and when they thought she had Pancreatitis but thankfully everything was clear. In our case surgery was the turning point for Roo and even with the side effect of short bowel syndrome she was left with I can honestly say she has never looked back and I would never wish her to go back to her pre op crohns life, it was just awful.

I wish you all the luck in the world with your surgery and recovery and I will be thinking of you.

Take care, :)
Dusty
 
Dusty, thanks for the encouraging words.

I have been trying to assimilate my recent developments. It's been difficult. I know the results of the surgery will be OK. I'm not sure about the process to get there. I am just thankful they can knock us out when they do the surgery. Could you imagine this back in the days when alcohol was the only anesthetic they had?

I have picked up a book on Crohns Disease, written by a patient, which has a lot of good information on how to handle things when they come up. They are not starting me on Humira until after the surgery is done. Probably not until I have had time to heal - they don't want to increase the risk of infection.

I have to admit to being really blown away by this diagnosis. My ET diagnosis led me down a much less stressful initial path. It was here, take this pill, see if it helps stop the shaking. If not, try this other pill... then if all else fails, and your tremors are bad enough, you might have a brain surgery.

This diagnosis its, You have Crohn's... You 1st need major abdominal surgery... and you will be on medications for the rest of your life. Including giving yourself shots ... with my ET shaky hands! (Don't worry, If I'm shaking to much my wife will give me the shot.)
 
Hey Doug, thanks for the update. I can only approach this as someone looking on as I have never been where you are, a person diagnosed with Crohns. We did not have the lead up and waiting that many of you face as Roo was diagnosed on the operating table. I faced what you are going through after the fact. In many ways it was a relief at first, at last we knew what was wrong. Then the questions and pondering began just as you have said. Surgery, medication, a life sentence, what will happen next, when will it happen and on it goes. In many ways I think I was lucky not to have the waiting and thinking prior to surgery but in just as many ways I wish I had. I had a different sort of waiting and wondering pre op and it was the fear of the unknown. You are so far from alone with this Doug and there are so many kindred spirits here to help you along. It's great to hear that your wife will give you the shots if need be! :lol:

Look after yourself Doug and please continue to keep us posted with how you are going.

Take care, :)
Dusty
 
Hi DougUte,

I was hospitalized with stomach pain and they wanted to do exploratory surgery. Ended up doing a large cut right down my stomach as they found a 'mass' and wanted a better look. Was told they removed it only to get back to my home town and further testing to be told, no, it's still there. Regular scans showed it to be shrinking and has now disappeared altogther.
Have you been told what your 'mass' is, assuming it is not diseased sections of bowel?
 
Lulu

I have been told it is a "Crohn's Mass". I did not know what to ask the doctor at the time. After doing research I believe it is diseased portions of bowel. I have been told that the odds of it being cancerous are next to none. I know I have at least 1 fistula that definitely needs to be closed.

You were told your mass was removed, just to find out later that it wasn't? I don't get it. Good thing its gone away. I read somewhere that with fistulas they sometimes tie off the connections but leave the fistula in the abdomen. Is that what they did do you?
 
Doug,

I have sections of diseased bowel interspersed with sections of healthy bowel, classic crohn's, but not bad enough for a resection. My 'mass' was a huge mass of necrotic lymph nodes which is why the initial exploratory surgery turned into full open surgery, so they could get a better look at this mass. Was told it was removed during this surgery but apparently not. Took about 6 months of gradually shrinking to disappear altogether.
I was quite relived to find out this mass wasnt cancerous also.
Good luck with your surgery, hope it all goes well and you feel a lot better soon.
 
i'm sorry if this is a dumb question, but how do these "diseased bowel sections" come about? i am still trying to figure out exactly what causes these portions of the intestines to turn into fistulas, and grow into a mass, etc.

from what i understand, with Crohns, there is a continued inflammatory response in the intestines, and the inflamed tissues eventually turn into scar tissue, or something similar to an infected wound...?

Doug - you mentioned that you'd have to be out for six weeks after your surgery... is that six weeks of lying in bed? or will you be mobile enough to still get around? in any case, best of luck to you!
 
I will be in the hospital for 5-7 days, and that is if everything goes well. It will be longer if there are complications, and my surgeon says there is a 50% chance of complications.

My surgeon is expecting a complicated surgery because the (*&%& gastroenterologist I use to have put me through 4 years of :oops: you have IBS. He never did a adominal CT scan or barium xrays. In 2006 my so called IBS sent me to the ER 6 times in a 2 month period - the intense pain. The Crohn's was not found because my Crohns is not in the terminal illeum, and when he did not find it there he stopped looking and called it IBS.

In the meantime I had untreated Crohns in the upper small intestine. This mass grew - its about the size of a small grapefruit now, and it needs to be removed. My barium xrays - took 15 minutes for the barium to pass from my stomach to the colon. I set the hospital's all time speed record.

So I will have a longer hospital stay, and a longer recouperation period. My surgery is scheduled for October 12th. I expect to be able to get around a bit at home, and I am hopeful of being able to attend the Utah vs TCU football game on November 6th. I'll be back to work on November 22nd.

Crohns does not attack the entire intestinal track at once. It targets different areas of the intestines, thus you have inflamed areas and areas that are normal. As my current G.I. told me , it looks like a bunch of sausage links in their casings.
 
OMG! I just read your post...I am sorry to hear of your struggles! Good Luck! Glad to see you found us...Sue :)
 

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