#161135 - 11/08/09 01:20 PM
Possible IBD ? I need some help
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Cosmololo
Registered Visitor
Registered: 06/19/08
Posts: 1014
Loc: Georgia
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I am having a very hard time right now for various reasons and I am going to try and keep this short.
I have been dealing with some form of IBS or IBD for months, really ever since my surgery last winter. It has gotten increasingly worse and I am losing weight still. I cannot go anywhere unless there is a bathroom nearby and I get anxious when I leave the house about using the bathroom which makes it worse. Sometimes I will get physically sick and almost pass out trying to make it to a bathroom and I am constantly thirsty. I am waking in the night due to abdominal pain at times and waking up almost every night because I am very thirsty. I have been checked for diabetes many times and I know it is not that. Anyway the anxiety seems to make it worse when I leave the house. I no longer want to even leave for fear of an accident.
I am already taking Imuran 100mg and injecting Enbrel weekly. I don't know what else to do. Does this sound like an IBD issue to you all esp. those who have IBD? It has been going on for a very long time, this is not something recent like being sick but seems to be getting worse. What do I do about this in your opinions?
Thanks for your help.
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#161139 - 11/08/09 04:19 PM
Re: Possible IBD ? I need some help
[Re: Cosmololo]
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Ides
Registered Visitor
Registered: 09/15/04
Posts: 506
Loc: WA
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What type of surgery did you have last winter? If you had your gall bladder removed, there is likely a connection with your current bowel symptoms.
When you awaken in the night are you having diarrhea or is it just the pain awaking you? Do you have any blood in your movements? Do you find the urgency is worse right after eating or a is there a timeinterval?
Have you had a colonoscopy? Have you seen a GI doctor?
Sorry about all the questions but it would help me understand the nature of your problem a little better. I have Crohn's and AS. My Crohn's symtpms are well controlled. My AS related symptoms are much improved since starting another TNF in June. I currently take 100 mg of Imuran daily and Simponi once a month.
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#161141 - 11/08/09 04:51 PM
Re: Possible IBD ? I need some help
[Re: Ides]
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Cosmololo
Registered Visitor
Registered: 06/19/08
Posts: 1014
Loc: Georgia
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It was gallbladder removal but I did notice an improvement for a little while after the surgery was completed. When I awaken at night with the pain it is associated with having to go to the bathroom (diarrhea). Usually the diarrhea is worse after drinking liquids mostly and any sort of anxiety. Sometimes Imodium will help and sometimes it won't help at all. It also does not matter what liquid I am drinking as even water will cause it. Most of the time it is short duration after the liquids or anxiety, very short duration.
I have never had a colonoscopy and I do have a GI doc who treats my reflux disease for which I have had several endoscopies. My next regular appt with him is not until December sometime because I keep having to reschedule.
Not sure if any of this helps to answer anything, I am glad to hear your Chron's is well controlled with the Simponi and Imuran. I just keep wondering if maybe I tried another TNF then I would do better but I have no clue what is going on. I did not tolerate Humira and had to go off of it but other than Enbrel that is all I have tried other than my DMARD's I have been on.
Thanks for the help.
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#161151 - 11/08/09 07:17 PM
Re: Possible IBD ? I need some help
[Re: Cosmololo]
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Ides
Registered Visitor
Registered: 09/15/04
Posts: 506
Loc: WA
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Some people who have their gall bladder removed develop a condition known as bile salt diarrhea. I would venture to guess that this is what has happened to you. Please read the information here: http://www.gihealth.com/html/education/bilesaltDiarrhea.html
There are medications that control this problem. You should be able to relieve the urgency after eating and drinking and the associated diarrhea. If the information/symptoms discussed in the link seem to describe you, please talk to your primary care doctor right away. I understand that discussing bowel issues is uncomfortable for some, but becoming housebound due to diarrhea and urgency is not the way to live ones life.
Good luck and let me know if this might be the answer.
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#161169 - 11/09/09 07:00 AM
Re: Possible IBD ? I need some help
[Re: Ides]
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JenInCincy
Registered Visitor
Registered: 05/19/08
Posts: 3630
Loc: Cincinnati, OH
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Ides sounds like she knows her stuff!
Cosmo, all I would add is that if stress or certain foods seem to trigger it.... that could be IBS. If you have diarrhea with abdominal pain/cramping, and if it has blood/mucous in it, that could be IBD.
Sounds like a very good idea to talk to your doc, regardless. There is a stool test (less invasive than a colonoscopy!!!) that is both sensitive and specific to Crohn's - many doctors don't know about it because it's fairly new on the market. It's called fecal calprotectin. If your doc suspects Crohn's and wants to scope you, it would be worth asking if you could do this first. Might save you the misery of a scope... It has been VERY helpful in managing my daughter's Crohn's medications in combination with her report of symptoms.
_________________________
Jen, 38, tentative spondy diagnosis, tried Enbrel 8/10, moved on to Humira 9/10; happy partner of James & mom to Evan, 10.5 & Lucy, 9 (Crohn's disease dx age 3, started Remicade 4/10)
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#162147 - 11/22/09 09:09 PM
Re: Possible IBD ? I need some help
[Re: JenInCincy]
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KellyChristal
Registered Visitor
Registered: 10/06/08
Posts: 1930
Loc: San Antonio, TX
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Another thing that could cause stomach irritation could be a bleeding ulcer that is lower in the GI tract. A friend of mine had a bleeding ulcer in her duodenum and never had red blood in her stools, but has loose stools, and painful cramping and gas. Have you ever tried carafate? It is used to treat ulcers...just an idea. But it does sound like crohns/IBD or IBS. Good luck..you need some good news and HELP! Thinking of you!
_________________________
if you change your thinking,
you can change your life ♥
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#162760 - 12/04/09 10:39 PM
Re: Possible IBD ? I need some help
[Re: KellyChristal]
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Cosmololo
Registered Visitor
Registered: 06/19/08
Posts: 1014
Loc: Georgia
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I was actually on Carafate last year for some esophageal ulcers and it did clear them right up. I saw the GI doc today and he doesn't think I need another EGD again for now but he did say I need a colonoscopy because he highly suspects IBD and he does not think I have IBS. He also does not think this is related to my surgery last March. He said we may have to also do an x-ray after the colonoscopy to check the small bowel I think. Anyway I have never had this done and I am very apprehensive about it. I have this to contend with and then I am still deciding on that surgical procedure/decision my gynecologist and I spoke about.
If anyone has any words of comfort that has been through the colonoscopy please pass them my way. I am not too comfortable with this coming up.
Thanks for your help ladies.
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#162773 - 12/05/09 07:48 AM
Re: Possible IBD ? I need some help
[Re: Cosmololo]
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mrye4709
Registered Visitor
Registered: 03/30/09
Posts: 1518
Loc: Oklahoma
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Only words of comfort I can think of is get completely knocked out....borrowing someone elses quote.....been there, got the shirt......
_________________________
I would be unstoppable, if I could just get started.
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#162809 - 12/06/09 03:27 AM
Re: Possible IBD ? I need some help
[Re: mrye4709]
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NWbrooktrout
Registered Visitor
Registered: 11/23/08
Posts: 1221
Loc: east of Seattle, WA
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I was awake for mine. But I got through it just fine!!!! it is a bit embarrasing ya but a MUST!
Ive had problems every since my gallbladder surgery too. They dont tell you very specifically about the bowel changes that will occur from that surgery.
_________________________
I cannot teach anybody anything, I can only make them think.
- Socrates
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#162886 - 12/07/09 09:12 AM
Re: Possible IBD ? I need some help
[Re: NWbrooktrout]
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JenInCincy
Registered Visitor
Registered: 05/19/08
Posts: 3630
Loc: Cincinnati, OH
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Cosmo, sorry you feel so worried about the scope .... be sure to ask for sedation, that will help a lot! I haven't had one, and my daughter of course was knocked out when she had hers at 3 ...
Sorry too that you have a pending IBD diagnosis; but with the diagnosis you can hopefully get treatment and feel better!!
Is your colonoscopy scheduled?
The x-ray thing for the small intestine is called an "upper GI series" if you want to google it. They have you drink a very yummy (not!!) "barium milkshake" which provides contrast and then they use fluoroscopy (live x-ray) to watch things moving through your small intestine. Painless if you don't count the nasty milkshake 
_________________________
Jen, 38, tentative spondy diagnosis, tried Enbrel 8/10, moved on to Humira 9/10; happy partner of James & mom to Evan, 10.5 & Lucy, 9 (Crohn's disease dx age 3, started Remicade 4/10)
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