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mommyoftwo

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I have posted numerous times but this is a new one for me. I have Lupus and since July 2010 I have been on Cellcept which had stabilized my Lupus and was wonderful. However, in March 2011 I started with daily diarrhea that got worse over time. I was told it was IBS but after starting to get severe weight loss (55 pounds since last August), severe pain, nausea and bleeding with my period I switched doctors. She repeated my colonoscopy about a month ago and found multiple ulcers in my terminal ileum and inflammation throughout my colon. The diarhea was so very severe but the pain and loss of appetite was even worse. The biopsy suggested that the cause of it was due to the Cellcept so on Friday June 8th, they stopped my Cellcept completely. Within, 2-3 days of stopping it though, the diarrhea stopped completely and I was back to having normal bowel movements but the pain and nausea was still there and just as bad. Unfortunately, about 5 days ago, I noticed my lupus flaring causing severe joint pain and also pleurisy. I also noticed my bowel movements getting less and less too. Because of the pain, my lupus doctor, yesterday increased my prednisone to 40mg and also started me on a new Lupus medication, with the blessing of my GI doctor. She also had me tell my GI doctor that I was still having just as much pain and nausea. Based on this, I am scheduled for a pill camera on Monday to rule out other causes besides just the medication.. However, the pain and loss of appetite is getting worse and today I realized that I haven't had a bowel movement at all since Saturday or Sunday...I can't remember. Should I be worried? If I had started the increase in pred or the new med this past weekend then I would have assumed it was due to that but I didn't. Could it be my body reacclimating or do I need to be concerned?
 
Sorry you are dealing with all this. The only thing I can think is, have been eating small amounts?? When you eat only small amounts sometimes it will take time for it do go through the gut and you might not have bowel movements as often. That is just a thought. Maybe call your doc and ask him/her. I hope you feel better soon....











mommyoftwo said:
I have posted numerous times but this is a new one for me. I have Lupus and since July 2010 I have been on Cellcept which had stabilized my Lupus and was wonderful. However, in March 2011 I started with daily diarrhea that got worse over time. I was told it was IBS but after starting to get severe weight loss (55 pounds since last August), severe pain, nausea and bleeding with my period I switched doctors. She repeated my colonoscopy about a month ago and found multiple ulcers in my terminal ileum and inflammation throughout my colon. The diarhea was so very severe but the pain and loss of appetite was even worse. The biopsy suggested that the cause of it was due to the Cellcept so on Friday June 8th, they stopped my Cellcept completely. Within, 2-3 days of stopping it though, the diarrhea stopped completely and I was back to having normal bowel movements but the pain and nausea was still there and just as bad. Unfortunately, about 5 days ago, I noticed my lupus flaring causing severe joint pain and also pleurisy. I also noticed my bowel movements getting less and less too. Because of the pain, my lupus doctor, yesterday increased my prednisone to 40mg and also started me on a new Lupus medication, with the blessing of my GI doctor. She also had me tell my GI doctor that I was still having just as much pain and nausea. Based on this, I am scheduled for a pill camera on Monday to rule out other causes besides just the medication.. However, the pain and loss of appetite is getting worse and today I realized that I haven't had a bowel movement at all since Saturday or Sunday...I can't remember. Should I be worried? If I had started the increase in pred or the new med this past weekend then I would have assumed it was due to that but I didn't. Could it be my body reacclimating or do I need to be concerned?
Click to expand...
 
It could be that the inflammation got pretty bad and made a narrowing/stricture making it hard for things to pass. I'm not sure if you're dealing with an obstruction or partial if either. If you are then they wouldn't be able to do the pill cam. I'd phone the doc anyway and let them know what's going on and if the pain gets worse and/or you start vomiting then you should probably head to the ER.
 
It definitely could be that I am not eating enough as everytime I try to eat I am having to take Zofran for the nausea and the pain gets worse do I am barely eating. Is there anything I can try at home to relieve it if it is some sort of obstruction? The pain is worse tonight but dont want to take any narcotics as that just causes more constipation, right?
 
I am not sure about the whole obstruction thing, but if you were having normal formed poops just a week ago, then I dont think it would be an obstruction, though I am not certain and if your pain gets unbearable I would definitely advise you to call your doctor and give him/her a heads up. I would try to only take in liquids until you start to feel better as it is easier on the gut. I am not sure what to tell you to take for the pain. I am in the same boat as far as pain, I am also in pain and nothing is really helping. I wish I had some answers. Oh, maybe try using a heatin pad and see if that helps a little. The heating pad is my best friend lately. I really hope you get some relief soon..






mommyoftwo said:
It definitely could be that I am not eating enough as everytime I try to eat I am having to take Zofran for the nausea and the pain gets worse do I am barely eating. Is there anything I can try at home to relieve it if it is some sort of obstruction? The pain is worse tonight but dont want to take any narcotics as that just causes more constipation, right?
Click to expand...
 
I went from 3-7 bouts of water diarrhea for about 15-16 continuous months then 2-3 days of "normal small" bms to now nothing since Saturday or Sunday.
 
I'm sorry your immune system is just coming at you from all ends :thumbdown:

I am in the same situation as you. I just weighed myself and I've loast 90 pounds in one year & am desperately trying to not get the NG tube again. You, like I, sound like you have severe malabsorption issues. You probably aren't even digesting the Prednisone properly. I am on Prednisone & every oter week or so I end up in the hospital having to get it via IV. Maybe you could talk to your doctor about doing something simmilar or adding a new med all together? I've been on & off liquid diets & they usually take away most of my obstruction pains. As a rule of thumb, multiply how many kilos you weigh times 40 & that's how many calories you should consume in a flare. I know it's tough to get those calories in but your body needs it to fight off the inflammation while keeping you well.

Also, I can't digest pills well at all & I take phenergan shots occasionally for the nausea when it's really bad. The stuff goes directly into your blood system & surpasses the GI tract so it works quicker & you KNOW it's in your system.

Take care! We're all in this together :ghug:
 
Well, I did add the capful of Miralax to my drink and took the suppository and the suppository did allow me to have a bm but I think I would have preferred to not have it. It was by far one of the most painful things but not the actual passing of it but way up high in my stomach and the cramping. Does that make sense? For not going for so many days and the amount of stomach pains, I expected a lot more to come out but I guess some is better than none and it was all covered in mucous. Sorry for the TMI. However, I still have wicked stomach pains and bloating. Hopefully the miralax will do more than the suppository did.
 
A little coming out at a time may be a partial blockage. Mucus is usually a sign of inflammation as well. So hopefully the narrowing is just caused by inflammation and the Prednisone will start working soon.
 
It's normal to feel that way. Miralax is only active in the colon & so you won't see results till tomrrow or the next few days. I did a suppository yesterday & it hurt like heck. I take about 3-4 doses of miralax a day sometimes & even then I can go a few weeks without a bowel movement. Miralax is mainly just magnesium so it isn't harmful to take more than one capful a day. I know that just one dose of miralax does nothing for me anymore.

When I was younger, I used to go to the ER every two days with full fecal impactions. Benefiber supplements helped me a lot. You may experiance some cramping/gas at first but it works & it isn't too much roughage like fiber is in most foods.

Take care!
 
I have had Lupus for 10+ years and do belong to a Lupus group also and with the exception of the Lupus med being the cause of the diarrhea, the doctors don't feel that my Lupus has a bearing on my stomach issues right now....I, on the other hand, don't know if I believe them or not ;) I actually don't know where I belong right now ;)
 
Im still having stomach pains especially after I eat which isnt much. I've bern taking 2 caps of the Miralax a day and that is just giving me stomach cramps. The suppository seems to help a bit but I am still bloated and sore. Guess we will have to see.
 
On Saturday, I had this gross loose type of stool that kinda "oozed" out (TMI) and then nothing since but I had the pill camera yesterday and it all seemed to go OK but today I am feeling really bloated and having more stomach pains. I stopped taking the Miralax after the oozing on Saturday but havent had any bm since then so do you think it would be OK to take a suppository today or should I wait until I see my doctor tomorrow? I'm also still loosing weight.
 
I wanted to pop in here...I also have Lupus, with a ton of digestive symptoms to boot. My lupus is attacking either the very outer layers of the intestines or the connective tissue, so I get crohn's like symptoms from it. You are not alone!

I have diarrhea all the time.... it seems like the inflammation keeps my intestines too irritated to work very well. I drop weight all the time from it. On the suppository, you are probably OK to wait until tomorrow when you see your doctor.

Our illnesses sound very similar! I really hope you are able to get this all sorted out soon!
 
Hi Allie,
I am sorry to hear that you also are dealing with similar things. My diarrhea stopped completely once they took me off of my cellcept which has now caused all of my bowel movements to stop completely. The cellcept was the only thing that kept my lupus stable though so we are trying new things now but ugh, this sucks. I think I would prefer the cellcept and diarrhea without the constipation, pain from the GI and the pleurisy and joint pain from the lupus.
 
Oh goodness, that stinks! I completely understand what you mean on preferring one set of symptoms over the other.... you really can't get away from every symptom, you just have to pick and choose which ones you want to trade out for new ones. >.< What weird concept! I hope they are able to find something that will keep your lupus under control without causing different symptoms that are unbearable as well. I'm on the normal pred/plaquenil right now, but my dose is too small....it worked for awhile when I was first put on it, but then I had a kidney infection that started a very bad flare that this level of medication can't handle. I'm in Germany with the U.S. Army and my treatment isn't very solid (my access to rheumy's is very limited here). Anyway, I got wayyy off track. I hope you figure this out soon!
 

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