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my wife has been diagnosed with ulcerative colitis....need some hope after internet searching!

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Ulcerative Colitis
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Posted 9/19/2011 6:23 PM (GMT 0)
Hello, My wife who is 36 was just diagnosed with ulcerative colitis about 3 weeks ago. She gave birth to our first child June 29th and thats shortly after her symptoms started. At first she just went to the washroom alot. Doctors did blood tests and stool samples and prescribed a general anitboitic and then flagyl antibiotic to try and remedy the situation. After completing the flagyl her bowel movements turned runny, with fequent blood, and she was going around 30 times a day with no warning......and her hemorrhoids got alot worst from when she gave birth. She was given codine which slowed the diarehha and was booked for a colonoscopy along with more blood tests and stool samples. She was prescribed prednisone (40mg daily) after the colonoscopy for two weeks till our follow up appointment with the surgeon. We also got some diet information from a dietician and she has been eating a low fibre diet.

Here bleeding slowed to only a few drops everyday and she went about 8-10 times a day with improvement on the warning time she had. After the follow up this past Friday the doctor said he had ruled out other causes of her colitis (including bacteria causes from to many antibiotics), added salofalk Rx and has her tapering off predisone slowly over the next month and a half. He said the left side of her colon was inflammed but the colon on the right side of her body was normal. Does this mean she has left sided ulcerative colitis? When we asked about a specialist he said since she was improving to just keep up with the treatment he is using and if she gets worst he would refer us to a gastroentrologist.

She seems to be improving slowly with the biggest improvement happening at the beginning of the prednisone. Now she goes usually 3-4 times in the morning after she gets up and doesn't generally have to go all day till late evening (once or twice) and is still getting up once or twice during the night and only sees a bit of red in her stool once or twice a day but no red in the toilet water like before.

Here only symptoms throughout this flare were the bloddy diarehha and urgency for bowel movements. She has had no cramping, nausea, vomitting or fever.

I am wondering if this is the best we can hope for as far as remission goes or if remission can be back to regular bowel movements with some warning as she continues with the medication? I have also had a hard time finding statistics on how many people with ulcerative colitis respond to medications, is it pretty much the norm to have to go through so many different medications to find one that works or is that the exception?

Also wondering if this could have all been trigered by the birth of our son (our doctor thinks so but the surgeon didn't)? I know that its not known for sure what causes the disease but it seems like to big a coincidence that this all started after he was born. I guess our hope now is that since she can't breast feed with the medications she is on that she will get back to her pre pregnancy state with regards to her hormones and everything else that pregnancy and birth puts your body through and that coupled with the medications she is on will get this thing into remission in time.

Do you guys feel this makes sense or is it just wishful thinking? I guess I am just looking for a little hope that she won't be sick for years and have to take reems of different medications and maybe eventually have surgery. There must be people out there with this disease that live a fairly normal life?

I am thankful after reading the suffering so many others are going through that she is improving and that her symptoms aren't as bad as some others dealing with disease. But it has been really hard getting this diagnosis, trying to raise a new baby and trying to keep life as normal as possible. The hope that one day she will get back to normal makes this all a little easier.

thanks and I look forward to your responses and wish you all luck in dealing with this horrible disease.

Posted 9/19/2011 6:35 PM (GMT 0)
You sound like a wonderfully supportive husband. Welcome, to Healing Well. I'm not going to say much, except that with the right meds, she shouldn't have any symptoms, whatsoever. That would be remission. What really works for a lot of us is rectal suspension enemas (mesalamine) and suppositories (Canasa) in addition to our pills.

She does have to take the meds for life, at lower doses if not flaring, but it's a small price to pay for the wellness she can achieve.

If she can maintain on these orals and topicals, great. If not, there are stronger meds, but a bit more toxic. She shouldn't have to put up with symptoms, especially urgency, and you sound like you will help her get on track to remission.

Also recommend psyllium husk and a probiotic.
Posted 9/19/2011 6:57 PM (GMT 0)
Wow, that is a lot to go through you are a great husband to be helping her through this! It is a physical and emotional roller coaster.

Most people do well on medications the worst that can happen is surgery so it is really not life threatening.

It can be difficult to achieve remission at first but the good news is that she is responding to prednisone, they should put her on a 5ASA such as sulfasalazine, ascaol or lialda while weaning her off the prednisone.

You do need to find a GI asap to make sure this happens.

Best of luck, take care.
Posted 9/19/2011 7:30 PM (GMT 0)
Left side may not fully respond to oral 5-ASA. IT may also be necessary to use 5-ASA enemas to get the best remisssion.
Posted 9/19/2011 7:38 PM (GMT 0)
big hugs for both of you. I also developed the disease after the birth of my child - it is common.

Please read these articles and also research "microchimerism"

http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0019658

http://www.ncbi.nlm.nih.gov/pubmed/18329105

http://www.ncbi.nlm.nih.gov/pubmed/21664033

http://www.ncbi.nlm.nih.gov/pubmed/21106482
Posted 9/19/2011 7:43 PM (GMT 0)
Timber, I also got my diagnosis after the birth of my 1st child. Really surprised me that you could be almost 40 and just getting this diagnosis - but after being on these forums for a while I see that it is really common.

I agree with the previous posters: get a good GI (sometimes that's harder than it should be - you want to look for someone with experience in inflammatory bowel disease), ask for rectal medications, make sure your wife is getting good nutrition (vitamin D, iron, b-12).
Posted 9/19/2011 8:12 PM (GMT 0)
yes rowasa enema's really helped me out when I was first diagnosed the relief was very quick!
Posted 9/19/2011 8:36 PM (GMT 0)
We understand that it's scary to be diagnosed with an incurable condition. The good news is that it is rarely fatal and that many people live long and prosper even having UC. The tough part is finding the right medication for her UC because she should not rely on prednisone, only for emergencies to get major inflammation lowered so that Rx meds have a chance to work.

Having a supportive spouse and family helps a lot, reduces stress a little, but coming to full realization that UC doesn't go away takes time, it did for me.

Your description does sound like left-sided colitis. That's good news of a sort because it could have been pancolitis or even Crohn's. Mesalamine enemas (Rowasa brand name but available generic) help left-sided a LOT. Please tell her ask for a prescription for them (and use them).

Best wishes. Searching through this forum will answer questions you didn't even know you have.
Posted 9/19/2011 9:48 PM (GMT 0)
thanks everyone, I will definitely ask the surgeon to refer us to a GI in the city and research the things you have suggested.
Just another question.
I have seen in researching that people go through so many different drugs and have developed other problems while on these drugs. If its looking like she will have to take stronger more potentially toxic drugs to get this into remission would she not be better off to get the jpouch surgery rather than potentially suffer for years and risk getting other disease from the medications? I know surgery is a scary prospect and left as a last resort but it seems like the only thing that is a cure for this............why don't more people go this route? Does the surgery have alot of risks with it?
Posted 9/20/2011 1:51 AM (GMT 0)
Hi Timber and welcome!

My story is very much like your wife's. I developed UC after the birth of my first child; I was 30 when he was born. And I even had horrible troubles with the hemmies that I got during childbirth because of all of the diarrhea!

Anyway, it is VERY possible that she will do quite well on the mesalamine-based drugs (salofalk is mesalamine). I was diagnosed with pancolitis (entire colon affected), and I have been in remission for close to 2.5 years now, and have so far only had that one flare.

I do, however, HIGHLY recommend that she get on mesalamine retention enemas. Many studies show that patients who use them in conjunction with oral meds reach remission more quickly, and that patients who use them twice weekly, in conjunction with oral meds, stay in remission longer than those who only use oral meds. This is because the oral meds don't reach the most distal portions of the colon and rectum, which is where flares start.

Some people do choose to jump to surgery if the mesalamine drugs fail, due to concern over side effects of the stronger drugs. I probably wouldn't do that, but I don't judge people who do. The thing is that there are also risks to surgery, and there is no given that a j-pouch will "work" as it is supposed to. That said, I can say that I won't hesitate to get surgery if the meds (and this includes the stronger ones) aren't working and UC is controlling my life.
Posted 9/20/2011 2:05 AM (GMT 0)
Try not to concern yourself with surgery or pouches now. It sounds like your wife does indeed have left-sided UC, and she seems to be responding to the commonly-used meds that control it. Good news thus far!!!!!! Many female members posting here have developed UC during pregnancy or shortly after childbirth, and they share their experiences over time. One of them, *Jen*, found a gastroenterologist in her area who subspecializes in pregnancy/postpartum IBD issues. Her name is Uma Mahadevan; she practices in San Francisco, CA. Your wife may want to come here to read posts by *Jen* and other mothers with UC when her time/energy permit. In the meantime, it's great that you're being so supportive in trying to find reliable info for her. Best wishes for you both to do well and enjoy your new baby. / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 9/20/2011 4:06 AM (GMT 0)
I too developed UC after childbirth! DEFINATELY get a GI. Regular MDs dont know or understand enough. Rectal meds are key to helping with flares. Enemas are great for nightime and suppositories for the morning. You dont even know suppositories are there but they dont deliver as much med as an enema. Slowly tapering them is key as well. When she is symptom free do every other night for a week then 3 times a week then twice then do about a month of 1 a week. And stopping the rectal meds slowly gives the body time to adjust to using only the oral meds. Unfortunately she will always need maintenance meds. Lialda is very expensive but allows you take less pills which can make life easier. She also needs to take supplements because UC causes you to not absorb nutrients properly. She can have her levels checked to see if she is defficient in anything. But general ones are large dose of folic acic (1mg) as it reduces cancer risks that are raised by UC. Fish oil, B vitamins, and probiotics. A good multivitamin is good for everyone. She also needs to know not to take any NSAID which basically leaves her with tylenol. And antibiotics should be avoided if possible. Also, her BMs may never be like they used to be. I have symptoms of IBS while in remission when i never did before. And, UC can cause inflimation in the joints and mucosa membranes and athritis symptoms. Remission is different for everyone. But there should be no blood or pain. A GI will tell you all of this but since you havent seen one I wanted to give you the basics. It is very hard to be diagnosed with this but honestly, once she gets her symptoms under control and gets used to daily meds she will have a pretty normal life. The biggest thing is she needs good support. It can be embarrising to tell people what you re ging through but its much better to explain it BEFORE they start asking why you run to the bathroom or you accidentally pass gas.
Posted 9/20/2011 5:37 AM (GMT 0)
So sorry to hear about your wife's struggle!  Recovering from child birth is hard enough, but to add UC and Prednisone to the mix makes it REALLY difficult!

You sound like a very supportive and helpful husband :)  My only suggestion would be to see a specialist. UC is an illness that needs more than an Internist or GP - no offense to them, but it sounds like you have a lot of questions and you need them answered by someone who specializes in UC and/or Crohn's.  Best of luck to you and your family!

Posted 9/20/2011 5:51 PM (GMT 0)
     You are a wonderful caring husband and I am happy for your wife that she has you!  This means soooo much.  My husband is just like you and I always count my blessings.

     First  of all,  they don't know what causes UC and there is no cure.  I developed UP (ulcerative proctitis) at the age of 52 after being on the Atkins Diet for two weeks.  My GI doctor said he thought it was just a coincidence but  I still think that diet set me over the brink.  I had IBS since childhood...Irritable Bowel but never IBD (Inflammable Bowel Disease) until going on that diet.

     Everyone who suffers with UC responds differently to different meds.  It is sort of a hit and miss situation.  It is best that your wife finds a GOOD GI doctor to set her on the correct path.  She will have to be on a maintenance drug, probably for the rest of her life.  Stress can play a major role in contributing to flare-ups too.

     The best of luck to her in battling this disease.  Hats off to you again for being so supportive.

Posted 9/20/2011 6:58 PM (GMT 0)
Not everyone has to go on the "harder" drugs. Keep in mind, the things you're reading on the internet tend to be from those who have the worst cases. The majority of people with UC that is well controlled by meds are not posting for support on internet forums.

I've had UC since 2007 and have not had to go on anything except Asacol and mesalamine enemas. I have severe pancolitis when first diagnosed, going to bathroom 30-40xday and night with mostly blood coming out and severe pain. I did not even have to go on steroids luckily. I'm doing great now on my maintenance meds. Not everyone has to go on other drugs. You have to be patient. She's been on salofalk less than a week.
Posted 9/21/2011 12:11 AM (GMT 0)
Timber2011,

Welcome to the forum.

You guys have been through so much as a couple - a beautiful baby  and now UC! She's lucky to have such a supportive husband!

I would definitely urge you to get a GI - that will be key to addressing your wife's concerns, symptoms, etc...

There are many different things you can do to help UC, here are my suggestions:

Here's what's worked for me:

1) Adding L-Glutamine 15 grams - for colonic repair.

2) Adding slippery elm bark powder - 1 tablespoon mixed in a little water, 3-4 times a day - IMO it is the equivalent in nature to the 5asa's.

3) Probiotics are key. If you can get the doc to write her a prescription for VSL#3 DS - that would be better, stronger, and probably cheaper ( IMO 3 x per day at least) than buying VSL#3.

4) Drink lots of good water.

5) Get your vit. d and b12 blood work done, to see if you are deficient.

6) SCD diet - specific carbohydrate diet - many have had lots of success with it. If she can't do it because it's so strict, at the very least do dairy free, wheat free, gluten free.

7) start a food journal and see what correlations come forth

8) Do some research on LDN - low dose naltrexone, you can search this forum as they are several threads on this. I can tell you it works! https://www.healingwell.com/community/default.aspx?f=38&m=2204683#m2214897

9) Adding rectal meds. Is she on any rectal meds like canasa suppositories or rowesa enemas?

10) She may want to add liquid vitamins/minerals to make sure your stomach does not have to do the work of breaking them down, and hence not absorbing them.

11) Also, I've been supplementing with good quality whey protein - Dr. Mercola's Pro-Optimal Whey, which I make with almond milk ( you can see from my sig).

I think the more information you can have on UC and all its issues, the better you'll feel, albeit after you get over the feelings of being overwhelmed by it all (i know, :()

There is no question that this is a tough disease to deal with.

The good thing is that you've found this forum and can help your wife, and you'll find a wonderful group of supportive folks here who've been in the trenches (no pun intended), can give you great advice, with whom you can vent as much as you want.

Good luck, and I hope she starts to feel better soon. Let us know how we can help you.


 

Posted 9/21/2011 3:05 AM (GMT 0)
Timber - what an amazing supportive husband you are! Don't lose hope after reading scary stories online. Your wife will most likely achieve remission once you find the right treatment. Definitely find a GI. I was in much worse shape than your wife, I had "angry pancolitis" as my GI put it. I am now living a completely normal life! What worked for me was alternative treatments. 5ASA's made me MORE sick, and I was not willing to take stronger meds. I met with a Dr. that does Applied Kinesiology, I also did Reiki. These treatments might seem a little strange, but at the time I was willing to try anything - and they worked! By my next scope I had a normal colon! My GI said see you in 5 years, I'm fine with you not being on Rx meds. Of course, colitis is different for everyone. What worked for me may not work for your wife. It's something to think about tho. Best of luck!
Posted 9/21/2011 8:09 AM (GMT 0)
You say that her GI prescribed a general anitboitic and then flagyl. If it's a bacteria overgrowth issue, then fecal transplantation might help (do a search on this forum for fecal transplantation to read all about it) and might even cause her poo to go back to normal. I don't want to get your hopes up though because fecal transplantation does not work for everyone who has UC. It has the best results for those who have C-diff or bacteria issues. My issue was bacterial (even though I tested negative after being on antibiotics for most of my life), and it put my poo back to normal. In the meantime, get some probiotics for her. I would mix the probiotic powder with water and use a syringe to put it up the butt after every time I went. It helped to put good bacteria back into the colon (although it wasn't nearly as effective as fecal transplantation).

Otherwise, she has a long road ahead, with no cure, except for colon surgery. She might find something that works. She might not. She might go into remission with medication. She might not. Pred tends to work; however, it is very damaging to the body. She shouldn't be on it for more than three months. After that, her GI will suggest stronger medication if she is still flaring. Hopefully, it won't come to that. Those medications shut down the immunity system and should not be taken by those who get infections easily.

Suppositories help flares that are near the rectum or limited to the left side. She should ask for suppositories if she hasn't been giving them already.

Diet helps for many but not all. She should keep a food journal and eliminate any foods/beverages that make her symptoms worse. Some people are able to achieve remission with diet alone. Many, including me, find spinach and sunflower seed butter to help a lot. I eat spinach almost every day.

Post Edited (subdued) : 9/21/2011 2:13:40 AM (GMT-6)

Posted 9/21/2011 9:44 AM (GMT 0)
Thanks for all the information and support. It's easy to get impatient and start thinking the worst is going to happen (great point sara14). I'll be thankful she is responding to medications already and that she is already getting off prednisone. Looks like atleast a 3 month wait to see a GI unless she starts to get worse. I guess the best thing to do is relax and wait and see how the salofalk works and see about some rectal Meds aswell till we can meet with a specialist. Atleast she is getting standard treatment from the surgeon who did her colonoscopy. All the best everyone and thanks again. Be talking to you soon.
Posted 9/21/2011 9:01 PM (GMT 0)
Your wife is lucky to have your support!! It is great you are so caring and involved in researching how to get her well again. Keep us posted and let us know if you have any other questions.
Posted 9/22/2011 10:22 PM (GMT 0)
I highly recommend the book Optimal Digestion so you both can learn about digestive health in general and you can learn about dietary and lifestyle modifications and alternative therapies your GI - when you start to see one - will likely not mention to you. It's in your best interests to learn as much as you can so you can make informed decisions, which will, in turn, help you both feel more in control and less frightened.
Posted 9/26/2011 10:03 PM (GMT 0)
Hey All,
Just a quick update. My wife has been tapering off pred 5mg per week till she gets to 15 mg then she will taper 5mg every 2 weeks. She is currently on 25mg. She should be off the pred by Nov 16. She has been taking mesalamine (salofalk) 500mg 4 pills twice daily. She has been getting a little better. She still has urgency but over the last couple of days she only went 2-7 times and no blood and some forming with occasional mucus. Today she had a set back and wasn't feeling good last night, she went four times this morning with some blood but said by lunch she was feeling better............hoping it was something she ate.
She is still eating the diet the dietian gave us and I ordered eating with IBD and breaking the vicious cycle books.

We called the surgeon today to ask if she should be noticing a bigger improvement on salofalk and if she should keep up with the current dose. He told us at our last appointment that our family doctor could refill the Rx for Salofalk so we didnt have to drive two hours to see him.

I know everyone is different but we are wondering how long she should keep trying with the salofalk before thinking that it might not be working entirely and maybe consider trying something else to completely get rid of the flare? I read it can take 2 weeks or more to notice even a small improvement with salofalk but we aren't really getting any answers on how long the doctor plans to keep her on these at this dose.

Atleast overall she seems to be having fewer symptoms and is feeling better, probably best to be patient and be thankful for that and expect that she will get completely better with time.
Posted 9/26/2011 11:59 PM (GMT 0)
It can take a month or more of daily use for oral mesalamine to start reducing flare symptoms. Since you mention Salofalk I assume you're outside the U.S.; are you in Canada? In the U.S. we have several types of oral mesalamine available for prescription; some are more helpful to certain UCers than others. For example, I was never helped by Asacol (= Salofalk in U.S.), but another mesalamine med, Colazal, (generic= balsalazide disodium) proved to be a huge break-through for me-- because it is designed to treat left-sided UC. I don't think it's marketed in Canada; however, some other countries do have it under the name Colazide. The latest thinking among U.S. gastroenterologists who subspecialize in IBD treatment with regard to oral mesalamine is: If at first you don't succeed with one of these meds, try another before you give up on oral mesalamine entirely. Other members here posting earlier recommended that your wife add retention enemas or suppositories in addition to oral med because they usually have an enhanced topical effect on the sigmoid colon & rectum that can speed up healing. Combatting UC flares generally requires a lot of patience, though-- that's the nature of the beast, alas. / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 9/27/2011 12:07 AM (GMT 0)
I think I'd call the doc and see if that's the maximum dose of oral salofalk she can be on. If not, ask if you can bump it up.

I'd also call back and tell him you want the mesalamine (salofalk) enemas. I had been on oral mesalamine (Asacol) for a week after I was first diagnosed, and had only noticed a tiny, tiny bit of improvement. I added the mesalamine enemas, and things got MUCH better right away!
Posted 9/27/2011 12:24 AM (GMT 0)
Thanks. Also what specifically is involved with the enemas. Can't seem to find any info on what you have to do when taking these?
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