Possible GI Bleed

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Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 12/4/2008 8:44 AM (GMT -7)   
Good Morning All
 
This might be too much information for some, but I really need to talk to someone. I have been through many GI bleeds, had blood transfusions and bowel resections and really don't want to go there again. My Dad had Chrohn's and they say I don't that it's all from the inflammation from the lupus and the meds I take to try and control the beast.
 
For over a week now I have had a suspecion that I might have another GI bleed going on. The day before yesterday it was pretty evident, so I called my GP and she ran some blood work and sent me home with a hemicult kit. Anyone who has IBS can relate I'm sure, there are days when I might go to the bathroom 8 to 10 times and others when I might not go at all. I've been trying to cut back on the amount of Norco I take because that tends hault things.
 
I am just a nervous wreck which I am trying not to show to my family because they have been through some much with me already. My daughter who will be 21 this month breaks down everytime there is a new development, she has been dealing with my illness since age 8. It has caused her some serious mental issues because of fear I was going to die and things of that nature when she was young. I was in and out of the hospital quite a bit in the beginning and alot of it in ICU.
 
I have been combing the web trying to find information, went to the Chrohn's site because I figured some of it would relate. The one thing I found is that blood normally acts as a laxative, so hopefully this is a sign that I'm not bleeding too massively, or at least yet.
 
Anyone have any experience with this? I appreciate any input you can give.
 
Thanks so much.
 
Melissa cry
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 12/4/2008 9:34 AM (GMT -7)   
(((((((( Melissa )))))))))

Scary . . . isn't it? I've not had issues that required surgery so I may be no more than moral support . . . but I was diagnosed with "most likely crohn's" in April.

I was prescribed Entocort 9mg/day . . . but was told to wait for next flare to start it. I was also asked to stop all NSAIDS . . . . I had been taking ibuprofin 2-4 x/day for years. So I stopped the ibuprofin and to my absolute shock . . . the GI issues have been pretty quiet. I am also surprised that I haven't had as much body aches/pains. I am now only taking daily plaquenil and am using a pain med very sparingly when I have super long days (like Thanksgiving and hosting holidays here).

I actually think that part of the healing happened with the colonoscopy prep. It was brutal this time and I was SO nauseous and ill from it. But . . . within a few days after the c-scope and biopsies, I was told to stop ibuprofen too . . .. so I'm not positive which was more help or if it was the combination. I do know that I had relief from bleeding issues after two other c-scope preps . . . so there must be some benefit (to me) from doing the prep itself. (sorry kind of gross).

Anyway . . . I hope they figure out what is causing your issues. It just wears you out when that pain and chronic D hits.

I'm sorry things are so hard for your daughter. It may be better for her if you don't "protect" her from information. Sometimes its just more reassuring to have more info. I am one who hides my pain and when I'm in a flare, I really try to manage w/o signaling to hubby and others that I'm in trouble. This has only served to make them wonder ALL the time if I'm ok. Hubby has tuned in to subtle signs of trouble. He can read my rosie cheeks and know something is brewing. Anyway . . . you might sit down with her and offer to be very open about what is happening. What they manage to concoct in their mind is way worse than what usually happens.

I hope you'll keep us posted on the GI issues. I think there are lots of us here in the Lupus forum that deal with GI issues. Its just not so easy to share this info.

Will be watching for updates.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 12/4/2008 10:14 AM (GMT -7)   
Melissa, I had a bleeding ulcer this past summer, did not require surgery, treated with meds. My brother has Crohn's he has had many massive bleeds and transfusions. He had his colon and 6 feet of his small intestines removed. It is true that blood acts as a laxative in the bowel. Maybe they will catch this one early enough to tx with meds. This isahorrible issue to deal with. I have watched my brother suffer tremendously. I'm so sorry for you & your family. I will pray for you. God bless you, Judy

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 12/4/2008 5:51 PM (GMT -7)   
Thank you all for you king words and support, as always it is much appreciated. My doctor called and said that my blood counts actually are not looking to bad, I'm little anemic, but not too bad. My hemgoblin was 11.4 and hemocrit 33, for me that is really, really good. So, if there's a bleed it's really small at this point. Still haven't been able to do the stool test yet, so don't know the results there yet.

My liver enzymes were way up from 2 wks ago though, which is most likely from the Imuran. It has jumped from 42 to 69 in 2 weeks, so they are concerned about that. They are trying to get me into my GI doctor asap to get everything checked out.

It probably is time to stop sheltering my daughter, old habits are hard to break sometimes. Also, I am not one who likes to burden others with my issues, if anything I tend to take their issues on too. Wrong thing to do I know, especially in my situation. That is why these websites are such a outlet for me, here I can speak about my issues and not feel guilty. I guess because I am talking to others who can relate to me and no one here is going to look at me and say "oh well, she looks fine!" I know you all can relate to what I am saying.

As far as GI issues go, I've always had them, stomach pain and such, literally I remember back to a very young child, before starting school complaining to my mother and her taking me to the doctor for it. It's something I've always lived with. Sigh. I can handle the pain, it's the bleeding I am not to keen on, don't want anymore surgeries.

Thanks again for listening ladies.

Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 12/8/2008 2:34 PM (GMT -7)   
Just a quick update. My GI docs office called today, they can see me on Thursday, thank goodness. Upto this point there has been no activity (if you know what I mean) so I am really getting worried. It has been a week since my last bowel movement and that was when I noticed the massive amounts of blood. So, that leaves me to wonder now what is going on. Perhaps there is a blockage or something. I am really stressing out over this, which is not helping any at all.

Sigh.....

Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/8/2008 3:38 PM (GMT -7)   
Hi Melissa,
 
I would be very anxious about this too.  I can empathise with you on this.  I don't like it when I go just one day without a BM.  Let alone a week. Please keep us posted on what your doctor says.  I'm glad you can see him this week.  Are you drinking enough water?
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 12/8/2008 8:59 PM (GMT -7)   
Hi Ginny,

Thanks for your support. I am drinking tons of water and doing everything I can think of. I have cut back on the Norco big time because this tends to cause constipation. My joints are really killing me, but I am willing to grin and bare it for the time being. I'll see what the doc says on Thursday.

Thanks for your support Ginny.

Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 12/9/2008 1:24 AM (GMT -7)   
Hi Melissa, I hope soething happens soon. I have gone for that long before but I don't have your history so I would be pretty concerned. Yes sometimes these meds can cause more problems than they are worth. I know vicodin constipates me. I aaam glad they can get you in thursday but if you are having problems you should probably go to the er. You know how dangerous this could be if you have a hole in your colon. Maybe you should call your doctor tom. and tell them you still havn't had any action and you are getting worried. Heck now I am worried! Please let us know how you're doing.
hugs
carol
Prayers,hopes and dreams!
Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
 
 


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1548
   Posted 12/9/2008 8:40 AM (GMT -7)   
Hi Melissa. I'm worried too, but at least your hemoglobin is normal. Still, going a week with no BM sounds serious to me. Have you talked to your GI doc's nurse? Usually what you tell the appt desk doesn't get relayed to the doc. I think the doc should at least know what's happening.  I've had chronic diarrhea for a few months and my GI doc agrees with me that it's probably the Cellcept I take. I can't stop the Cellcept right now because I was having bad neuro/speech problems and rheumy also increased it to try to help me decrease prednisone. I go for a colonoscopy next month. Please keep us posted okay? Love, Butterflake 
SLE ('05), depression, diabetes, fibro, gerd, sleep apnea, hypertension, IBS Tx: CellCept, plaquenil, prednisone, lisinopril, actos, lipitor, nexeum,
prozac, seroquel, celebrex, actonel ,arthritis tylenol, neurontin, promethazine, ambien, flexeril, multi vit, C, flaxseed oil, acupuncture    Welcome to lupus where the strange is ordinary and nothing is normal :D
 
 


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 12/9/2008 11:04 AM (GMT -7)   
I haven't talked to the nurse, perhaps I should call, I don't know. I'm not real happy with this GI doctor, but I live in a rather small town and don't have many options when it comes to specialist. That's why I travel 3 hrs to my rhuemy. He's a good doc, but he's got a bit of an ego, he's very young and has a lot of growing up to do I guess is a good way to put it. When I was in the hospital in August, I had an endoscopy, I was still in recovery, he came and talked to my husband, told him there were signs of bleeding in my stomach, i.e. caused by my meds and such, but he never came back to talk to me the entire time I was in the hospital and never requested me to follow up with him when I got out of the hospital! I am a little upset about that and plan to let him know, because I feel that we could have prevented this back then prehaps.

My husband is a prominant figure in our town, the doctor comes from a very wealthy ranch family. So, he is usually more concerned about talking to my husband or about my husband when I have an appt. Up to this point I have put with it because it has not hurt my health, I am furious at this point and plan to lay into him on Thursday about it. I just do not have the energy to drive 3 hrs to see another specialist, the perks of living in the middle of nowhere, ehh?

Butterflake, I know how draining constant diarrhea can be, that is normally what I live with. It makes it hard to live a normal life and makes one leary to get to far from a restroom. I will be praying that all goes well with your colonoscopy next month. Perhaps you will have good luck like AlwaysRosie and the c-scope will help to settle things down.

Thanks again everyone for allowing me a venue to vent and for the much needed support you all offer!

Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 12/11/2008 3:49 PM (GMT -7)   
Well, I went to my GI doctor today, it actually went pretty well I guess. He looked over my blood work and all that. He reviewed my chart and we talked for awhile and came to an agreement that since my blood levels are not too bad we will leave things as they are for now. Since I am very familar with GI bleeds we will sit back and wait to see if this was just a fluke or if the blood in the stools becomes perdominant. I hate to wait to the point that something definately goes wrong, but the thing is I'm not sure my body can handle much more at point. He talked about adding more meds, but thought twice because my rhuemy is really trying hard to get the lupus under control.

He went on to say he is thinking twice about chrohns, he thinks what I am experiencing is a result of inflammation either from the lupus or perhaps chrohns, maybe a combination. He said if I too have chrohns (like my Dad) then the meds I am on are the same as he would treat that at this point.

So, it's sit back and wait to literally see what happens.

Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/11/2008 8:10 PM (GMT -7)   
Hi Melissa,
 
Well it's good that you don't have anything urgent happening.  But the wait and see game can be just as exhausting can't it.  I had blood in my stools very early on about 3 years before my diagnosis came.  I had horrible D at the same time.  A colonoscopy was done and it showed inflammation.  Too bad my doc at the time didn't have the sense to look into WHY I had the inflammation.  Idiot.  So, maybe it will be from your lupus or chrons?  I'm glad you told us how it went.
 
Blessings,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

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