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NEED HELP... Recently diagnosed with UC

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Posted 6/10/2009 5:32 PM (GMT 0)
Hi all,

I've been doin a little searching over the past week or so and finally found this forum site.... what I've been looking for to ask sooo many questions. Please bear with me on this as I explain the situation.... I'm sure may of you have been through the same thing. I may miss a few things with meds etc as I'm writing this while I'm at work and don't have all the info at hand.

My partner(26yr old female) was recently diagnosed with UC in March this year. After a few months of bleeding, mucus, cramps and many many urgent trips to the toilet etc etc  her health really started to deteriorate to the extent she would just lay on the lounge totally exhausted after work and going to bed not long after... we finally convinced her not to wait the next 2mths for her colonoscopy in this condition and took her to the ER dept at hospital.... she was admitted straight away and colonoscopy done, confirming UC. She then spent approx 1 week in there recovering whilst being pumped with (from memory??) IV Pred, collazide and some other things to bring it under control. After being discharged she appeared to get alot better after taking 40mg Pred capsules daily (weening down after a few feeks)along with collazide & Omega3 Fish oil. All was going well with semi-solid/solid motions and no bleeding/mucus for approx a month.

The Pred was weened down and completely stopped, only contiuning with Collazide and Omega3 Fish oil daily. A week after completely stopping the Pred, the symptoms started coming back.... and over the next 1-2wks I might add with an almighty avengance!!! To add to this(she works in childcare) she was the lucky one to cop a vomit shower courtesy of one of the kids at her work... hence sparking the worst bout to datedue to some bug she picked up thats also attacked the bowel..... landing her in hospital for another week of being pumped with Pred, balizide (can't remember the others). Symptoms weren't completely gone, but under control somewhat. Currently got discharged from hospital a week ago today (albiet 14kgs heavier to to the fluid retention) and the bleeding is coming back stronger by the day. Toilet trips are frequent and explosive... even throughout the night many times. She's currently on 50mg Pred + ?? x Collazide + Buscopan for the cramps, + I think still on the fish oil too.

Our next appt with the GI isn't for 2 weeks, I'm not sure I can sit here and watch her go through this all again, waiting to see him all the while she just deteriorates like she did before. I'm over the hospital and over seeing her soooo bloody sick!!!

WHERE DO WE GO FROM HERE???

She has found out that a partner of one of her old school friends as UC as well and has been in remission for a year or so now.... apparently he swears by the "Aloe Elite" stuff. Is this really worth the price to try it???

Please help with some sort of advise.... I'll keep searching the forum in the mean time to see what I can find.

Thanks,

Brighty.

 

Posted 6/10/2009 5:55 PM (GMT 0)
I've had good luck bouncing back from stomach bugs by taking high doses of Natren's Bifido Factor probiotic - powdered and non-dairy. This could help her get over the hump, so to speak.

By all means, if she's suffering and her condition deteriorates daily, call her doctor to see if you can get in sooner.

Another piece of advice: I'd suggest she look for other employment that doesn't expose her to every bug that comes along. Working in or having a child in childcare is notorious for making even "normal" people ill. The last thing she needs as someone with an autoimmune disease is stress and constant exposure to bacterial and viral infections.
Posted 6/10/2009 6:15 PM (GMT 0)
Uuugh, it sounds like she's really been through a lot. I think she definitely needs to get back in to see her GI sooner than her apointment. Call and explain just how ill she is and see if they can do anything? Is she using any rectal meds? If not, she should definitely try them.

Unfortunately, it does sound like she may be steroid dependent. If so, you may have to look to other treatment options...perhaps Remicade? I'd start doing some reading about the more agressive treatment options, in case she has to resort to them.
Posted 6/10/2009 6:39 PM (GMT 0)

fruitgirl said...
Is she using any rectal meds? If not, she should definitely try them.

Thanks for the quick replies... you actually just jogged my memory... she was starting to use Colifoam just prior to the last episode started but due to the amount of times she needed to "go" it really didn't have time to take any effect. She's start using it again as of last night, so hopefully it should see some sort of improvement.

The probiotics seems to be something we should definitely look at getting started on.... it can't hurt!!

And as for the career move... well, I'd like to see her try and get this under some sort of controlled normality. I'm not to sure she'd know what to do if she doesn't work with kids.... it'd tear her heart out if she had to give that up as well as having this disease too!!

Posted 6/10/2009 6:42 PM (GMT 0)
I am sorry you are both having so many troubles. It's nice that you care so much that you come here to try to find solutions for her. Unfortunately I am sort of new to all of this and I don't know too much. I would think maybe some of the biologic meds might be able to help her, I have seen so many people with wonderful results. There is also always the surgical option. She definitely needs to find out her options and make some decisions. She can't keep continue to live the way she is forever. I guess I have been somewhat lucky because my flare is less persistent than many of the situations I see here. I have been able to control it with 5ASAs. I do suffer from fatigue often.

I hope you guy get some relief soon.

Posted 6/10/2009 11:25 PM (GMT 0)

well, I got home from work early tis morning to find out her bleeding is getting worse. Will be trying to get in to se the GI today... don't like my luck though.

See how we go and what action he decides to take.

Any info on this Serovera or Aloe elite stuff??? Would be interested to try and see if this works in conjunction with the probiotics.

Also, what is Remicade???

Thanks!!

Posted 6/11/2009 12:37 AM (GMT 0)
Hi, welcome to Healingwell :) I'm sorry you had to find us though but I'm glad you are here trying to find help for your partner. That's very caring and thoughtful of you!

I can't comment on any of the Aloe products since I've never tried it but it has been discussed here at length. To look up older posts about the Aloe, use the Google search bar above and type in the keywords.

Do you know the extent of her Uc? Meaning, does it involve her entire large intestine, a portion, left sided, rectal? Where are you from? Has she ever tried Mesalamine or Salofalk enemas? If not, this may be an option. There is a class of "safer" drugs that are called 5-ASA's. Mesalamines and Basalazide are among them and is considered to be safe for long term usage while the steroid enemas/foam or capsules are not safe for long term.

Also, Remicade is a biologic medication that is given via infusions. I don't know the whole schematics behind this since I've never researched it but if all other conventional medications have been tried, Remicade is usually the last med of choice before surgery. But if she exhausts all other other med options, look into Mercaptopurine (6mp) or Imuran before going to Remicade. These two meds are immune suppressing medications. It lowers the immune response and it basically makes the body stop attacking the colon which in turn allows it to heal.

Please check out our resource section as well as www.ccfa.org for more information.
Posted 6/11/2009 12:49 AM (GMT 0)
ask the GI about putting her on Lialda or asacol....those daily pills that UC people take....dosage is different for everyone..

The Rowasa ememas may be hard for her right now to tolerate since is going to bathroom so frequently, but maybe she could them a try......There are also canasa suppostories.

NO fiber!!!
Posted 6/11/2009 2:41 AM (GMT 0)
Have you guys made a "plan" for example if one drug doesn't work what's the next step? She sounds like she may end up back in the hospital, you need to make an urgent call to your GI doc to try to fit her in ASAP. Flares tend to be an urgent thing with this department, so don't hesitate to call. Make a plan so you guys know what to expect. I did that when I failed Remicade and I was glad to have that. It kinda helped me prepare myself. I'll be praying for you guys.
Posted 6/11/2009 11:49 AM (GMT 0)

Red_34 said...

Do you know the extent of her Uc? Meaning, does it involve her entire large intestine, a portion, left sided, rectal? Where are you from? Has she ever tried Mesalamine or Salofalk enemas? If not, this may be an option. There is a class of "safer" drugs that are called 5-ASA's. Mesalamines and Basalazide are among them and is considered to be safe for long term usage while the steroid enemas/foam or capsules are not safe for long term.

OK, to answer a few more details and facts about her UC...

- From memory it's affected part (maybe 2/3)of the colon, can't remember exactly though. Will need to reconfirm this with the GI when we have our next appt. and get back to you.

- We live about 1hr north of Sydney in Australia.

- Currently back trying Colifoam enemas as of 24hrs ago.

- Drugs currently being taken are

  *Colazide 750mg, taking 3 caps, 3 times daily.(this is the equivilant to Basalazine & Mesalazine)

  * Prednisone currently reduced dosage to 25mg daily as of 48hrs ago, as advised by GI.(Possibly going back to 50mg daily if flare continues)

  * 1 x Swiss mulit vitamin daily

  * 2 caps x 1500mg Fish Oil daily.

  * Probiotics 1-2 daily starting 12hrs ago.

  * Buscopan - Possibly 6-8 daily depending on cramping

After a call to the GI this morning, he's now advised we need to take more dramatic drugs to bring this under control. The drug he's prescribed is called "Azathioprine 50mg" Has anyone used this drug??? Or can advise where we can get more info on side effects etc etc???

We're a little hesitant to use this straight up without trying a few different things first as the GI did advise this was a long term drug to take once she started on it. As we "were" looking to start a family early next year, this seems to be putting the plans back a little and being on immuno surpresant drugs surely can't be beneficial to either falling pregnant or during pregnancy.

As for the 5 ASA drugs.... We've not been introduced to these as yet. The only one that seems to be Asacol which we have no idea where in the range of meds this sits with regards to severity. Can you tell me which are the 5 ASA's and I'll query the GI about them next visit.

Thanks for all the advise... much appreciated.

Posted 6/11/2009 1:47 PM (GMT 0)
Azathioprine, otherwise known as Imuran, is an immunosuppressant drug. You can find information here:

http://www.webmd.com/drugs/drug-13771-Azathioprine+Oral.aspx?drugid=13771&drugname=Azathioprine+Oral&source=1

You can also search either name on this forum and find many discussions about it.

Colazide is an ASA drug.

Posted 6/11/2009 3:02 PM (GMT 0)
5-ASA medications include the oral mesalamines (Asacol, Lialda, Pentasa) and basalazide (Colazal - Colazide) and the rectal mesalamines (Rowasa, Salofalk, Canasa). It seems that it might be wise to exhaust these first before resorting to Aza (Imuran). It seems her GI is being a bit aggressive and sometimes that is best and sometimes not. It depends on her comfort level. Suggest the rectal 5-ASA meds first before starting on an immune suppressor. As our resident queen of rectal meds (Quincy) would say - treat both ends! :)
Posted 6/11/2009 9:35 PM (GMT 0)
The problem with some of the supplements is that they don't work fast, like prednisone does. (And Remicade did for me). It seems 50 mg of pred should be having some effect, and it makes no sense to me to reduce it while she is still doing as bad or getting worse. The side effects are awful, but she is very sick!

If the prednisone doesn't work, she might be one of those that can't wait years trying things before turning to a more intensive treatment like an immune suppressor (Remicade) or even surgery. But I'm also surprised she hasn't been put on a 5-ASA by now.

I hope she can get past her suffering soon!
Posted 6/11/2009 10:49 PM (GMT 0)
As others have suggested above, i would say try all the rectal & oral 5-ASA drugs first before u go ahead with immuno-suppressant. I was trying to heal myself only with rectal medicine (i wanted to go real slow) but finally had to start with oral as well... i wud suggest try rectal & oral together.
Posted 6/12/2009 12:31 AM (GMT 0)

ok, so we've done a little research on the drug Azathioprine... to us it isn't an option just yet. We're both not convinced we need to take that step just yet.... soooo more researching for us.

Another probably stupid question... what does ASA stand for???

Posted 6/12/2009 2:01 AM (GMT 0)
5-aminosalicylic acid (5-ASA) is the formulation for these medications.
Posted 6/12/2009 4:23 PM (GMT 0)
Just remembered - when i was dx for the first time this January & my GI told me its autoimmune disease & at the same time i was also dx with Hypothyroid(again autoimmune). So i asked my GI to give me something to suppress my immune system as that is what is causing me problem. But she straight away said "NO!! " She wanted to go slow & prescribed me rectal medicine first and after that did not help much she has put me on Oral + Rectal together.

Also, keep checking if there is certain food which she eats increases the flare. My case, i cannot eat pizza or anything with low fibre.

take care
Posted 6/12/2009 8:31 PM (GMT 0)
Reviewing her story again, it seem she got much worse the second time around due to the exposure to some stomach bug through her work. Have you talked to her doctor about putting her on an antibiotic to address infection? Many folks are put on flagyl or cipro when an infection is suspected. Here's an overview of different drug treatments:

http://www.badgut.com/index.php?contentFile=ulcerative_colitis&title=Ulcerative%20Colitis

You might also ask about putting her on a predigested diet to allow the bowel to rest and heal, while still getting her the nutrition she needs.
Posted 6/14/2009 4:16 AM (GMT 0)

princesa said...
Reviewing her story again, it seem she got much worse the second time around due to the exposure to some stomach bug through her work. Have you talked to her doctor about putting her on an antibiotic to address infection? Many folks are put on flagyl or cipro when an infection is suspected. Here's an overview of different drug treatments:

http://www.badgut.com/index.php?contentFile=ulcerative_colitis&title=Ulcerative%20Colitis

You might also ask about putting her on a predigested diet to allow the bowel to rest and heal, while still getting her the nutrition she needs.

Hello everyone,

Thankyou for all your help and input- it is great to know that I am not alone with this disease. As you can all see my partner Brighty is very supportive and I am very gratefull to have his help researching this disease.

In reply to princesa:

The doctor put me on a two week course of flagyl, that I completed a few days ago.

 Can you please tell me more about the predigested diet? I am very interested? So I ask my specialist about this?

I am going back to see my GI tommorow and to ask for other alternatives before going on the immuno-suppresant Azathioprine (imuran), we are not totaly convinced that this is necessary at this stage so I am looking for alternatives. Any suggestions on other things I should ask my GI that I can try first?

Post Edited (Petaunwell) : 6/13/2009 10:25:58 PM (GMT-6)

Posted 6/14/2009 12:09 PM (GMT 0)
Petaunwell, I'm glad you decided to join us! :) The most important question I think you need to ask first is to see if you can try rectal meds such as what I stated above. Alot of doctors for some reason don't prescribe these - maybe due to the lack of med compliance with rectal medications? But these really truly can help. I know your partner stated you were on Cortifoam but if you have 2/3 or less of your colon involved, a liquid (not foam) enema might be the better choice for you. The foam can only reach to the beginning of the sigmoid while the liquid versions can reach into the sigmoid and bit beyond.
Posted 6/14/2009 12:09 PM (GMT 0)
Petaunwell, I'm glad you decided to join us! :) The most important question I think you need to ask first is to see if you can try rectal meds such as what I stated above. Alot of doctors for some reason don't prescribe these - maybe due to the lack of med compliance with rectal medications. But these really truly can help. I know your partner stated you were on Cortifoam but if you have 2/3 or less of your colon involved, a liquid (not foam) enema might be the better choice for you. The foam can only reach to the beginning of the sigmoid while the liquid versions can reach into the sigmoid and bit beyond.
Posted 6/14/2009 3:53 PM (GMT 0)

Red_34 said...
Petaunwell, I'm glad you decided to join us! :) The most important question I think you need to ask first is to see if you can try rectal meds such as what I stated above. Alot of doctors for some reason don't prescribe these - maybe due to the lack of med compliance with rectal medications? But these really truly can help. I know your partner stated you were on Cortifoam but if you have 2/3 or less of your colon involved, a liquid (not foam) enema might be the better choice for you. The foam can only reach to the beginning of the sigmoid while the liquid versions can reach into the sigmoid and bit beyond.

Thanks for the feedback.... hope it doesn't get too confusing having me answer some of these questions for Peta... I'm often on here from work at night time(US day time)and her from home during the daytime(US night time)... sooooo

when you talk about a liquid enema.... would this be something like Entocort??? Will definitely be asking the GI about that!!!

One thing I need to clarify is this, so correct me if I'm wrong here... from all the reading that we've done in the past few days, what I think I've come to establish is that;

- the 5ASA's are drugs to keep UC at bay once under control??(or can these be used to control a flare as well???) Along with rectal meds too.

- Prednisone is the next step in controlling/managing a flare up. Again, using rectal meds also.

-Immunosurpressants such as Imuran(azathioprine) are used where Pred will no longer have any effect and stronger drugs are required.

-Then Surgery... as a very last step once all other avenues are exhausted.

At the moment, she's been on 50mg Pred(up from 25mg) + 9 x Colozide daily + Rectal Colifoam(Morning & nightly) + Probiotics + Buscopan for the past 72hrs now... still not seeing any improvement as yet and the bleeding is still there almost every motion. She's not eating much as the pain she goes through is not good... and anything she does eat stays approx 15mins then it's a sprint to the toilet. Mind you she's dropping a bit over 1kg/day over the past week too. This is where the GI wants to go to Immunosurpressants, even though he doesn't know all these symptoms yet due to us not been able to get in to see him last week and were hoping the Pred would work a bit better in the mean time. Is this the only option for us now as the pred just doesn't seem to be cutting it and making any difference??? We were hoping after 72hrs we'd see somewhat of a difference after upping the pred, but it's not to be. confused

Posted 6/14/2009 4:07 PM (GMT 0)
Entocort is an oral steroid. It is considered a safer steroid because it doesn't release until it reaches the small intestine treating the ileum and/or ascending colon. This is mainly used in Crohn's patients. Some Uc'ers can use this but it is not that effective for Uc.

If you are seeking a steroid enema, instead of Colifoam, as for a cortesteroid enema. The 5-ASA meds are basically at two levels. A higher dose is used to treat an ongoing flare and reduce the inflammation. A maintenance dose is a lower dose and used to maintain remission.

After the immune suppressing medication such as Imura (Aza) or 6mp (mercaptopurine), Remicade or even Humira is an option before surgery.
Posted 6/14/2009 4:15 PM (GMT 0)
 

Thanks Red_34,

So would we be best to ask the GI to try a stronger dose of one of these ASA meds instead of the Pred before going to the Immunosupressants??? I thought the pred was used when there was a severe flare and these ASA meds more than likely wouldn't do the job, but again... we're learning.

Posted 6/14/2009 4:17 PM (GMT 0)
Hey you can't learn if you don't ask questions right? :) Some Uc'ers need both the 5-ASA and prednisone to get their flare under control and that is perfectly normal. So yes, she can try both the higher dose of a 5-ASA and/or she can use the pred.
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