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Husband has UC, starting new flare, I need help please!

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Posted 2/14/2015 2:02 PM (GMT 0)
Hi, I'm new, and here for my husband. Diagnosed with UC several years ago. He went on WW diet, eating a lot of Healthy Choice frozen meals for lunch which resulted in a 100 pound weight loss (much needed) back in 2012, it took a year. Following that, he had a severe 4 month long flare which caused an additional unwanted 40 pound weight loss. He because severely anemic, weak, anorexic, bloody stools up to approx. 20 times a day. Unable to tolerate Lialda due to severe arthritis symptoms. Had been on Endocort for several years, but after this flare, his GI stopped that and put him on Imuran while tapering him off off Prednisone.
He is currently on Imuran 50 mg. 4 q d, Benebiotics 2 q d, Ferro-Sequels 1 q d, multivitamin 1 bid, Hycosamine 1 bid, Librax 1 bid, tramadol 50 mg. 1 bid-tid depending on pain levels, fish oil 1 q d, vitamin D-3 1 q d, B-Complex 1 q d.
He's now starting another flare.
He "normally" had 6-8 bm per day, which I dont think is normal and his GI doesn't get excited about. Hasn't had a colonoscopy since 2011? I think.
What am I doing wrong? He's always exhausted. He's always in the bathroom. What can I do to improve his quality of life? Any advice would be so much appreciated. He just got labs drawn yesterday, but we don't hsbe results back yet. I believe the order was for a cbc, crp, and cmp. The Prometheus test done 2 weeks ago showed that the Imuran levels were fine, but I truly don't think this med is working for him. Thank you.
Posted 2/14/2015 2:28 PM (GMT 0)
I believe a flex sig or colonoscopy at least to see what's going on and I had, at those times, often needed home health nursing with IV steroids to bring me into remission. That did happen for many years off and on, having tried different diet alterations and supplements while in and out of remission, For me I only healed with meds prescribed from my GI and am now in remission with Remicade 1/10 weeks plus 100 down now to 50 mg Imuran and Apriso.
VSL #3 ever been used?
Good luck and others here will help you with any non-traditional treatment: diet advice and supplements. GI's do say stay away from foods that bother you but others here are more specific. You'll get advice from smoking helps to don't eat anything but salmon daily so good luck weeding through it. Those pointing to more conclusive scientific links/data I have more confidence in.
Posted 2/14/2015 2:42 PM (GMT 0)
6-8 bms a day isn't normal, it means there is a lot of lingering inflammation. Add biologics (remicade, humira, simphoni)?
Posted 2/14/2015 4:14 PM (GMT 0)
Something doesn't sound right but I'm not really sure what it is. Entocort is a very unusual choice for UC as it doesn't usually release in the correct area to treat UC. If I were the doc I would start all over from scratch. 6-8 BM's per day may be acceptable to some but it is NOT normal.
Posted 2/14/2015 6:57 PM (GMT 0)
Currently the big med is the Imuran 200 mg. daily.
I'll go with him to the next GI apt. And ask about a colonoscopy.
I'll also ask about the biologics.
I agree, being in the bathroom that often isn't right, but it's like he feels it's normal for him. I know it's not normal.
Within 10 minutes or less of eating anything, he's in there.
How can any food trigger a BM that quickly?
And it's not unusual for it to happen at a restaurant, then a stop on the way home, then in the bathroom as soon as we're home. And, the restaurants we visit are only 20-30 minutes away from our home.
What's getting him and me is the total exhaustion. But, if he's losing blood again, he's probably wiping out his iron stores. Despite being on iron 3 times a day.
Any other suggestions for OTC that can add to help him until his next apt?
No, nicotine is out. Nothing crazy, he won't go for that. But, if it's a capsule or tablet, I can put it in his pill box, as long as it doesn't interact with what he's currently on.
Thanks again for your suggestions. They are much appreciated.
Posted 2/14/2015 7:45 PM (GMT 0)
I've been there, done that when I was bad. You eat and your brain signals your digestive system to ramp up without knowing that we are already ramped up.
Posted 2/14/2015 9:28 PM (GMT 0)
BobbyzGirl, all of the things you describe are very common with uc, when symptoms are present, that is flaring. I often would go to the bathroom before leaving the house, on the way have to stop, go at the location, go on the way home, and once home again. It becomes normal to him, as we are all creatures of adaptation, we get used to living like that. Many of us here have experienced it.

You and he should educate yourself as much as you can, and go to your gastroenterologist office with lots of questions. Be your/his own best advocate on what he needs to heal and be healthy again.

Right now, I have 1 bm a day, I'm in remission (an absence of uc symptoms). And I hope your bf achieves it soon as well.

Good luck,
Posted 2/14/2015 11:47 PM (GMT 0)
Thank you, I will go with him to the GI.
Husband, we've been married almost 38 years. Actually, we got engaged on this day, 38 years ago. 😊
And I will be ready with lots of questions, and more questions, many thanks to this forum and the info contained in it.
I just want him to feel better. We've been together for 42 years, and hope to be together for many more years to come.
Posted 2/15/2015 7:19 PM (GMT 0)
You ask what you are doing wrong. You are not doing anything wrong, this is a nasty disease which is very individual and doctors often don't even treat it that well so you should not think that you can cure him.

I would ask about biologics as others have said.

What sort of iron is he on 3x a day? Iron can be quite toxic for UC, which does make treating anemia complicated. Iron infusions are more recommended than pills for severe anemia.

The immuran may be adding to his exhaustion, it unfortunately causes tiredness for many above the awful fatigue that UC causes. UC does come with awful fatigue, he will need to rest and accept this www.fatigueinibd.co.uk/

He can have a stool test called fecal calprotectin to try to judge current levels of inflammation without putting himself through a scope.

The reason you go to the bathroom so quick with eating is not down to the type of food, it is that your colon is inflammed so any chewing wakes up the digestive system and then the inflammed parts try to move on anything touching it asap, they cannot do the normal work of the colon which is to absorb excess water, hence stools are loose, although some parts of the colon are sluggish too, which is why you can get mixed constipation and diarrhea.

Tramadol is a strong, addictive medication and can upset the bowel in itself too. Does he really need to be on it daily? He may well be addicted now. I know that some with IBD may have terrible pain if they have strictures or fistulas but with "normal" UC the pain can usually be managed without daily opioids. Could he try learning the practice of mindfulness to deal with his pain?

He came off Lialda you said but could he tolerate rectal mesalazine?
Posted 2/17/2015 5:31 PM (GMT 0)
1) You might want to become familiar with Pubmed - the national database of medical research papers (covering UC and everything else - keyword searching is pretty basic and online help is available if necessary).

http://www.ncbi.nlm.nih.gov/pubmed/

2) There is some evidence that iron supplementation to treat anemia can promote inflammation - making UC *worse* - closely question your gastro about this -

http://www.ncbi.nlm.nih.gov/pubmed/24486177
http://www.ncbi.nlm.nih.gov/pubmed/23320878

A major problem with starting/taking multiple meds concurrently is figuring out which med may be causing which side effect (or having no effect at all).

3) Inexpensive, easily accessible OTC options that have helped me personally (but UC is a *very* idiosyncratic disease - try each sequentially in order to clarify cause and effect) include -

a) Melatonin (rarely known by gastros - I find the Walmart 1mg dose (x4) with B6 to be most effective) -
http://www.ncbi.nlm.nih.gov/pubmed/24247651
http://www.ncbi.nlm.nih.gov/pubmed/23975342
http://www.ncbi.nlm.nih.gov/pubmed/23727938
http://www.ncbi.nlm.nih.gov/pubmed/21893693
http://www.ncbi.nlm.nih.gov/pubmed/20676767
http://www.ncbi.nlm.nih.gov/pubmed/18626968
http://www.ncbi.nlm.nih.gov/pubmed/17439553
http://www.ncbi.nlm.nih.gov/pubmed/16192667

b) Psyllium (active ingredient in Metamucil, etc.) -
http://www.ncbi.nlm.nih.gov/pubmed/17329047
http://www.ncbi.nlm.nih.gov/pubmed/14512034
http://www.ncbi.nlm.nih.gov/pubmed/10022641

c) EGCG (Component/extract of green tea - rarely known by gastros) -
http://www.ncbi.nlm.nih.gov/pubmed/25261409
http://www.ncbi.nlm.nih.gov/pubmed/23761791
http://www.ncbi.nlm.nih.gov/pubmed/22409325
http://www.ncbi.nlm.nih.gov/pubmed/22325177
http://www.ncbi.nlm.nih.gov/pubmed/18325726
http://www.ncbi.nlm.nih.gov/pubmed/18022615

d) Gingko Biloba (again, almost unknown to typical front line gastro) -
http://www.ncbi.nlm.nih.gov/pubmed/18567620
http://www.ncbi.nlm.nih.gov/pubmed/17392580
http://www.ncbi.nlm.nih.gov/pubmed/16458529

Each of these (very surprisingly) has worked for me to a degree comparable to Asacol/mesalamine.

UC is very idiosyncratic but these options may be worth consideration if you are getting dissatisfied with the "standard" meds prescribed by your average gastro.

*Many* UC sufferers find the standard meds inadequate/counter-productive.
Posted 3/23/2015 10:31 PM (GMT 0)
His GI apt. Is this Thursday. sorry, we vey had some stuff dealing with here at home.
He's had an increase in severe hip pain, to the point where he's limping now, in excruciating pain. Agsin, he refuses to see a family MD, "not that bad". Takes tylenol and goes about his day.
He does take the tramadol but doesn't touch the RA pain. I'll ask about further labs while at the apt. And a biologic. He increased his Imuran to 5 a day. His H/H are bottomed out again, despite being on iron. No answers on that?
This is ridiculous. We can't get his levels up. The iron might be messing up his colon but without it he becomes more anemic...its a vicious circle.
He bleeds then doesn't.
I'm having a serious talk with his GI this week. Because I'd like to keep him around.
Sca721. Melatonin...what benefit is that for UC? Thanks in advance?
London, Imuran adding to exhaustion, I agree 100%. Addicted to tramadol? No, because I do his pill box and he asks for one when he can't walk. it's hard for me to get him to take tylenol.
Thanks for any advice or help.
Posted 3/27/2015 6:51 PM (GMT 0)
Sorry I missed this. Hope the appointment went OK?
Posted 3/27/2015 9:50 PM (GMT 0)
I am about a 6-8 most days. There is no way that it's normal
Posted 3/27/2015 10:02 PM (GMT 0)
He increased his imuran without getting any direction from the GI? You really need to see blood work to determine whether it is safe to increase the dose of imuran. I hope he is getting some advice from the GI now that he went in. Please give us an update when you get time.
Posted 3/28/2015 12:05 PM (GMT 0)
Sorry, let me clarify. His GI called. Instructed him to increase his Imuran to 5 daily which he did.
Continues with same symptoms. BM frequency 6+ daily, at the very least. And I know there's blood. He denies it, but there's that smell...? Sorry to be so graphic...and I do the laundry so, yeah, there's that...
Stress is definitely a major factor in his symptoms. He has a stressful job. And we've had stressful issues at home, health wise for both of us. And other factors.
Sees his GI on this Thursday, April 3rd, for his apt. Sorry, I didn't make that clear either. Will discuss a biologic, which we did talk about on the phone with the GI when he called with his last lab results.
When the nurse called about his Prometheus results she told me they were wnl.
However...The MD said to bump the dose up, they were sub-optimal. Also, H/H were actually lower than prior results. Despite the multivitamin with iron and ferro sequel. Which he takes per his GI instructions.
I realize he's not improving, but he has now seen 2 GI specialists and they both concur with his treatment.
I don't understand why he's not had a colonoscopy for several years. His GI explained that his colon is so inflamed it would be harmful to him to try and do one. But wouldn't that give us some answers?
His last CT showed the UC pan-colitis? I might have that wrong, I'm not sure at this point, that was back in 2013.
One thing we found, he cannot eat yogurt.
He can tolerate milk and milk products but yogurt gets him every time. So, should I stop the probiotics he's on and just do a trial for a week and see how he does without them?
He's on Nexebiotics. He definitely got better after starting them...
What is the forum's thoughts on that.
I'm asking for more labs, TIBC, ferritin, another CBC, RA, sed Rate, CMP, CRP.
Any other suggestions? Thank you in advance.
I know I'm all over the map but im just trying to pull my thoughts out and put them down as they come to me.
I always send in his med list with my husband when he goes. I asked him if I could go with him to his apt. And he doesn't want me to, he feels I "complain" and worry about nothing too much. So, I'll call the office ahead and and have them give the doctor a message for his chart. He's pretty open to that. And won't ignore it, will actually read it and take it to heart.
So, any suggestions are truly appreciated.
Posted 3/28/2015 12:12 PM (GMT 0)
Perhaps a biologic, such as remicade, humira, or simponi, may finally bring him some relief. Remicade put me into remission after 2.5 years of struggling.

How long has he been on the increased Imuran dosage? It should take 3+ weeks to see results.
Posted 3/28/2015 12:37 PM (GMT 0)
He's been on the increased dose for 5 weeks now. I know that because I just picked up his second refill from the pharmacy. And redid his pill box after the phone call, and have to fill the box today (2 weeks at a time), so it's been 5 weeks. No change, improvement, lessening of symptoms. His hip pain is worse...? Correlation between the 2? Other than RA and UC?
Posted 3/28/2015 3:33 PM (GMT 0)
5 weeks is long enough for the increased dose of Imuran to work, if it was going to. Biologics are used to treat both ra and uc, perhaps they'll help with both.
Posted 3/28/2015 5:17 PM (GMT 0)
Sounds like a lot going on. I would ask about iron infusions as taking oral iron could be aggravating things.

I am someone who gets more problems from yoghurt rather than milk, yet raw sauerkraut is good for me. I am not sure but it may be the s thermophilus strain that my body is rejecting as that is in yoghurt but not sauerkraut. Someone on here once posted a link to a good paper about intolerance to that strain. With probiotics I find the best way is to add them in individually as I've often had problems with the ones that contain many different strains.

If the smell is really bad, has he been tested for c difficile with a reliable test? I say reliable as the standard toxin test is not very reliable. Protocol here is that needs to be tested 4 days in a row and stool got to lab asap and kept cold. There are different types of stool test for it.

Recent article on lack of c diff testing in IBD patients www.annalsoflongtermcare.com/content/ibd-patients-often-not-tested-c-difficile-infection
Posted 4/4/2015 4:49 AM (GMT 0)
Well, he saw his GI MD on Thursday. Update as promised.
No med changes except that since he's concern that the Imuran isn't giving Bob the relief or results he was hoping for by now, he's added a packet of EnteragGam powder twice a day.
Back in 6 weeks. Get the Prometheus labs, a CBC and CMP and a 6TPMT done prior to next visit.
He did mention (as several of you have told me) that the iron may be contributing to the diarrhea and frequent bm's but instructed us not to change his meds until the next ov.
He also discussed several biologics but told Bob he wants to do Humera, pending on insurance approval. And wants to see how this packet stuff does.
He also cautioned Bob that if he gets ill at all.. For more that 2 days, call him immediately. He would probably need to be hospitalized. I'm not sure if this is from the enteraGam or Imuran.
He also told Bob about the cancer risks with Imuran which I was aware of but he wasn't.
That's why I didn't want to start it to start with.
He discussed the possibility of colon cancers with Imuran but doesn't want to do a colonoscopy yet.
Idk..I feel like we're just going no where at this point.
He's alread had an aggressive basal cell CA on his neck and needs to go back to the derm again.
First thing he's noticed, increased frequency, and diarrhea from the new med. and we're traveling from outside of Louisviille Ky to Pensacola Florida tomorrow. I'll double dose the immodium. Not sure what my other choices are.
I'm also wondering now, after reading London's post if stool culture would be a good idea. Thank you. Last time they were done was back in 2013, ++ for c. Diff and treated with metronidazole at the time. I asked about stopping the probiotic as a test, and the iron, but again, he said no changes in his meds, just add in the new one.
Anyway, many thanks for your advice.
I do read the posts and take it all to heart. For that I say many thanks for your concern, wisdom and input. It truly means a lot.
I'm hoping we can do the Humera. I can give the injections here at home.
Just need to get it passed by the insurance but since he's failed several other meds for UC and now has the arthritis on top of that (enteropathic arthritis?) I'm hoping it will go through without a hitch.
Per so many suggestions I was hoping for Remicade but we've got to start some where with a biological agent.
And this makes me happy, sad but happy.
I just want him feeling better.
He was in the bathroom today 5-6 times since coming home at 3:45. Tell me, how's that right?
How can he not be exhausted just from that?
Actually, I got busy getting ready for our trip and I finally lost count.
Thanks again.
Posted 4/4/2015 11:41 AM (GMT 0)
Humira might do the trick then. You have much worse cancer odds from continuous, untreated uc inflammation than on humira. Humira + imuran odds for it are 0.06 percent, or 6 in 10,000. Not sure on the see doctor if he's sick for more than two days bit, sounds overly cautious to me. Infections like bronchitis, uti, sinus all should trigger you going to see your doctor, no cold.
Posted 4/4/2015 11:55 AM (GMT 0)
Sorry to hear that meds are not working. I do think testing for c diff sounds necessary if he has had it before. It does recur in many cases. Personally, I would not be touching Imuran if I had already had a basal cell carcinoma, I would rather have the colon out than be dosing myself daily with something that ups the risk of a cancer I had already had.

I am worried that you say he is going to double dose of immodium. With someone with as much inflammation as he seems to have, you are risking toxic megacolon. He may need to stay at home and rest rather than subject himself to the stress of travel.
Posted 4/4/2015 11:08 PM (GMT 0)
I didn't increase Imodium. We just stopped on the road as we needed to. The trip was to see our sons, grandson and daughter in laws. Both boys are in the military. One in Florida and one in Georgia. Thus the road trip. To get away from the stress of the job. He's in management.
The basal cell was last fall. He ended up with a 6" incision on his neck to remove a spot the size of an eraser tip. Scary stuff. But it's gone and he goes back to the derm in a few months.
He planned the trip. My back can barely take the car travel but that's another story.
Definitely will ask about c diff testing. I'll call when we get back.
Thank you
Posted 4/6/2015 4:39 PM (GMT 0)
While I can't offer you much advise, I just wanted to say what a great wife you must be trying so hard to save your husband's quality of life. Not everyone has such a great support system! Best of luck to the both of you.
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