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Posted 1/14/2011 6:16 AM (GMT 0)
Hello All,

I am a new member on here but have been reading posts as an "outsider" for a couple of months now. I want to thank everyone for being so candid and open about their various conditions. You are all very strong and I don't know how you do it.

I do not have ulcerative colitis myself, but my fiance was diagnosed with severe colitis this past August. He was misdiagnosed by a doctor who did a scope instead of a colonoscopy...they said he had ulcerative proctitis and that suppositories would help (which they obviously did not due to the misdiagnosis and the severity of his colitis).

Since his colonoscopy and real diagnosis, my fiance (Rob) has been on prednisone, Imuran (started December 23rd), and Remicade (first infusion last Saturday). He has heard mixed reviews about Remicade, although he's heard that most people for whom the drug works usually feel better shortly after their first infusion. He hasn't gotten better at all and is starting to worry that it is not working for him (he'll have another infusion next weekend and one four weeks after that, and then every 8 weeks afterwards). I just wanted to ask if it is normal for Remicade to take longer than a few days/week to kick in? What is a typical response time?

I only ask because he is starting to give up. He is such a happy, positive person most of the time, but this disease has changed him. He is so depressed. He goes to the bathroom 15-20 times a day and has to wear Depends because he has so many accidents. I know many of you have been through this, and I just want to know if there is anything that I can do as his fiancee to help him think positively and feel better. Any good/positive/hopeful news I could give him would greatly help. We are a 25-year-old couple in the midst of planning our wedding, and I want him so much to enjoy his life.

It seems as though his condition has gotten progressively worse. He started off with increasing BMs, and then the rare accident would happen in the late spring/summer. Since then he's probably gone from 6-10 BMs a day to up to 20 a day, with at least one or two accidents a week. He just started a new job that he wanted very badly, and he's worried that his constant trips to the bathroom will start to be noticed by his boss. Everything is adding up to a very unhappy Rob.

I realize that I've brought up many issues in this post. My mind is scattered all over the place. It is nice to know that someone out there knows what this is like and can maybe lend a comforting word.

Thanks for reading,

Erica
Posted 1/14/2011 7:22 AM (GMT 0)
welcome to the forum and so sorry you've had to join us!
Sounds like he is really suffering, it is a terribly emotional thing to have sudden onset of a chronic illness. Add to that his physical suffering, more than likely some humiliation (as far as the accidents go) and not showing improvement yet... it's really tough.

I'm not on Remicade myself but I think it can take a little while, someone who knows will likely answer that question for you.

I'm sure your compassion and understanding of his situation helps him more than you know, even though the disease is getting him down right now.

when did he start on the prednisone?
Posted 1/14/2011 7:38 AM (GMT 0)
I'm sorry to hear that your fiance is feeling so poorly. While the physical symptoms of this disease are bad, I can attest to the fact that the emotional burden can be just as severe.

I don't remember exactly when remicade started kicking in for me, but it was roughly around a week. As I understand it though, for some people it may take multiple infusions before they see a noticeable result. I was unable to take 6mp since I couldn't properly metabolize it, but I think it can take a few months to start working. I realize patience is a lot to ask when you're rushing to the bathroom 20 times a day, but I think a little more time is what this current course of treatment needs.

Others on this forum have found mesalamine enemas to be highly effective. While I never personally had any luck with them, it may be worth trying in addition to what he's on now.

I wish I could offer you better advice, but I wish the best of luck for your fiance and his health.
Posted 1/14/2011 10:20 AM (GMT 0)
that's great you are seeking help for him. I've noticed stress adds to the possibility/severity of a flare. Maybe the new job/wedding planning is taking a toll? Simple things like meditation/yoga/working out/enough hours of sleep make all the difference for me. It's also helped me to share my "disease" with close friends/colleagues, it took me years to finally open up, but once I did people are a lot more understanding.

Have you thought about a second GI opinion? Has he called his current Dr/Nurse to let them know he is still going xx times to the bathroom? I'm learning a lot of this disease is mental. Two particular flares I had(one was a switch from Asacol to Colazol) and one was when I was put on Prednisone. It was I think a week or so and I was still feeling crapty(pun intended!), I called the Dr to let them know that it wasn't working. viola. that day I started to feel better. amazing.

Has he changed his diet? I know when I am in flare I HAVE to change my diet, low residue/low fiber diet helped the best for me. The only thing I could keep down was bland white rice and good sashimi. Check what you can/can not eat on this diet and try it out. A good GI should also have a suggestion. I've encountered GI's that say food does not have an affect on UC. How can someone say that when most(every?) patient says otherwise.

btw, how much prednisone is he on? Although I didn not like the side affects, once I hit 60mg/day, things did finally take a huge turn for the better.

Hope things start to improv soon, I know they will. This may sounds silly, but watching comedy movies also help me when I am feeling down.

Best
Posted 1/14/2011 11:49 AM (GMT 0)
You are very supportive but your fiancee needs to come here and read-read-read. He will feel better after seeing how people gain control of their lives again. There is no single answer to "when will Remicade start to work" for him.

Getting UC is a very big upheaval and when the stress of a new (even wonderful) job is added the stress affects UC in a bad way.

3 suggestions:
-get RX and use Mesalamine enema nightly
-use Immodium to slow down the transit time in his colon
-get RX for Bentyl which is gut specific to stop colon spasms
Posted 1/14/2011 12:50 PM (GMT 0)
Has he ever tried oral medications such as Asacol, Lialda, Apriso, Colazal? These can be used with the Remi if he can tolerate them along with rectal meds. A low fiber diet can help slow down his bm's as well as possibly adding in a fiber supplement and a probiotic.

Welcome to HW btw and I am glad to see you here, looking for help for your fiance. I can hear your fear and concern thru your post. Please have him join us.
Posted 1/14/2011 12:59 PM (GMT 0)
I'm sorry your fiance has been going through this. Also, I know it's hard on the partner so you just writing this means you care and I bet that means the world to him. I have pancolitis and was going 20-30 times a day and having to wear depends due to accidents everyday. I finally started Remicade and it took 5 infusions for it to kick in for me. But, I finally have my life back. It really was worth the wait. During my wait for it to kick in, I would read on here about people having relief after the first treatment and here I was ending up in the hospital in between infusions. I also noticed more people having relief after their 3rd infusion, so please just tell that it is normal to not have symptom relief so early on. I hope he gets to feeling better soon and that you two can have a wonderful life together.
Posted 1/14/2011 2:03 PM (GMT 0)

  I am sorry that he is going through this. I want to tell you to keep reading everything you can on this forum. There are many people that are here to help.

  My 15month old little girl was diagnosed with pancolitis and she also was going to the restroom 15-20 times a day with blood in her stool.

  She did not respond to any of the medications that are given for this disease. In my heart I always thought she had a parasite/bacteria overgrowth that was controlling her bowels. Yet not one GI doctor would prescribe an antibiotic for UC. To make a long story short. She suffered for six years, pumping medicine into her little body, and one day she got pneumonia and was given an anitbiotic ( rocephin) and within 24 hours her colitis was GONE. Her stools were formed . That was October 26 2006.  Here it is  4 1/2 years later and she is doing great. She has been off of all UC medications since that day.

 What I want to stress to you is that after she became well, I have many doctors tell me that they feel that she had a bacteria/ parasite living in her colon that was not found with the "normal" testing that they do. It could of been a combination of many things. Yeast overgrowth, bacteria overgrowth, parasite. The point is that now the doctors admit that "they do what works, they control the inflammation or they stop the immune system from attacking the invader"

 I have been watching this forum since Hailey was 2 and I have learned sooooo much. From my experience with my daughter, if I read anyone that is not responding to the typical meds for UC, then I encourage them to talk to their doctor about trying an antibiotic made for the colon. Try one and see if it makes a difference.

 https://www.healingwell.com/community/default.aspx?f=38&m=1689855&p=1

 Here is the journey that we went through with our daughter.

 Rob, please be strong and know that you can overcome this. There are many on this forum that have and we are all here to help.

Post Edited (haileys letter) : 1/14/2011 7:07:09 AM (GMT-7)

Posted 1/14/2011 4:08 PM (GMT 0)
I'm so sorry to hear that Rob is so ill. I don't have much advice on his treatment, other than that I do know that it can take a few infusions to kick in for some people. I would also encourage the two of you to go ahead and consulty with a surgeon. There is a good chance the remicade will work and keep him in remission, but it sounds like his UC is very hard to treat, and it might be a good idea to go ahead and learn what the different surgical options are.

I think the best way to help him is to make sure he knows that you're there for him, and that you'll stick by him despite the UC.
Posted 1/14/2011 5:17 PM (GMT 0)
Well done for writing a post on the forum - I think some UC sufferers are so desperate and alone it's almost a last step. The great thing is, it's one of the best steps to take as you'll find is loads of great advice on here which can really turn a bad day into a good day. Read about diet, ask questions about the meds, start a food diary, start experimenting with foods etc. etc. Suddenly you'll find you have a plan of action and you're doing something constructive about UC which makes you feel better about life.

UC means a massive lifestyle change for some (every UC sufferer has to change their lifestyle to some degree), so it's really good to read about the different ways people are helping themselves and improving their lives. Never give up - there is always hope.

Not sure if he already has, but why not ask Rob to use at the forum?

Post Edited (wavey) : 1/14/2011 10:22:56 AM (GMT-7)

Posted 1/14/2011 6:58 PM (GMT 0)
Hi All,

Wow, thank you for your replies. I am overwhelmed with gratitude for the time you have taken to write to me (and to Rob!) about his worsening condition. I appreciate it so much.

I am not too good with mg, but he started off taking around 8-9 prednisone pills a day, and has been tapering for weeks. He is now only taking two pills a day, and I thought that that might have something to do with his flare. He has an appointment on Jan. 20th to see his GI and will mention it to him then. The problems we've faced have to do with getting appointments. His GI is super busy, and it's difficult/impossible to move up appointments (not sure if this is because we're in Canada or what). It is also a relief to hear that people have had various results with Remicade. We will remain hopeful that Remicade will be the answer.

Thank you for the suggestion about enemas. He is going to try them right away. The probiotics as well. It is so nice to hear that there are other methods that he can try. He will do anything and everything to help his colon at this point. Red_34: as per your question about him trying Asacol, Lialda, Apriso, Colazal...he hasn't tried those yet...his doctor hasn't even mentioned those as options. Are they anti-inflammatories as well?

He has made some massive lifestyle changes. He's currently trying a gluten-free diet, and staying away from fried/greasy/spicy foods (he definitely misses his pizza!). Rice and plain chicken/turkey for him most days. We have heard mixed opinions about fruits and vegetables, so that is where we are a bit stuck. He's not sure if eating lots of fruits and veggies will just send him to the bathroom more frequently. Thoughts?

As for exercise, he is terrified to do any. He is actually a pro golfer by profession, but now he works with Titleist in an office setting (it is more consistent and also better for his stomach). He had to quit golfing in the summer because of frequent trips to the bathroom. He used to play hockey in the winter, but the thought of wearing that much equipment and being more than 10 feet away from the bathroom is understandably scary. I am going to see if he will go on walks around the block with me. That way, we are close enough to home if he needs to get back, but also doing a bit of mild exercise.

I have asked Rob to join the forum and he said that he will. He has also been reading as an "outsider" for a while now, and every so often he shouts out some hopeful news about a person on here who has had luck with something. It is very uplifting...even if that certain something doesn't work for him, it is nice to know that there are options and other people who have gone through it all before.

Thank you again for your support. It means the world to me!

Erica
Posted 1/14/2011 7:42 PM (GMT 0)
Hi Erica! Welcome! :o)

I'm on Remicade. When I went on it my doctor told me that on average his patients feel better after the 3 loading doses (The first 3 doses that are given closer together than a typical infusion schedule). Some people do feel better right away, for others it takes a little longer, but I don't think Rob should feel discouraged less than a week after his first infusion. For me, I felt better after infusion 4. I still have to do a bit of a balancing act to keep things in check. Probiotics, Mesalamine enemas, & plenty of fiber. But my colitis is doing really well. :o)
Posted 1/14/2011 8:06 PM (GMT 0)
Welcome!

You should give the Remicade up to the 3 loading infusions. The first 3 are the make it or break it stage. I was able to have the first 2 but then had a horrible reaction to the third. Everyone is different, so hopefully he can bounce back soon.
Posted 1/14/2011 8:12 PM (GMT 0)
Regarding fruits and vegetables....we sometimes have issues with them raw when we are flaring. So he may want to avoid raw fruits and veggies until he feels better. Cooked fruits and veggies are normally fine. Something that can also help him bulk up a little are very ripe bananas along with rice. How is he with dairy? This is another thing that can irritate us while flaring.
Posted 1/14/2011 8:15 PM (GMT 0)
Hi Erica and Rob! Just wanted to welcome you to the forum. I was on Remi for over five years and did very well with it. I'm in remission and taking Asacol for maintenance. I had quick results with the Remi, but being on this forum for so long, I've noticed that it takes about 3-6 infusions before most start feeling better. As mentioned above, you might want to throw in some enema's to get him over the hump. Also, when I was flaring badly, I ate quite a few different fruit sauces; apple, peach, etc. Natural peanut butter is great for protein. Chopped spinach was another thing that helped -- but food is so indivualistic that you should make a food diary. It's so tough to be dianosed with this, and it's wonderful he has such a supportive fiance. You rock! Again, welcome to both of you.
Posted 1/14/2011 9:05 PM (GMT 0)

sErica and Rob:

I agree completely with the overall sentiment of the responses.  One week on Remicade and Imuran is like wondering why a one month baby isn't running by now.  Take your time with this.  Imuran can take 3-6 months to kick in.  Remicade can also take a few months.  I had horrible colitis.  My whole colon was involved and had a lot of bleeding, urgency, etc...  The Imuran alone was enough for me to get my colon healed.  I have been on it for about two years and I noticed an improvement after about a month.  I had my most recent colonscopy this last November and my colon is about 95% healed.  Just a little patch of inflmmation in my rectum.  My doc added Canasa suppositories.  I was able to drop my Imuran from 200 mg to 150 mg with no issues.  If my rectum is healed in May I will drop to 100 mg. 

The point is to try to be very patient.  Most of us have suffered for months if not years before we got the right treatment and really saw results.  A lot of that has to do with docs who don't listen or treat properly.  It sounds like Rob is getting the big gun treatment to calm the UC down quickly.  I am confident things will get better as the weeks pass.  Again, be patient.

All the best.

MyUC


Posted 1/14/2011 10:59 PM (GMT 0)
Fruit and veg has different effects on UC sufferers so there is a lot of trial and error - start that food diary ASAP!!

There seems to be general agreement that the fruit skins are bad so always peel (apples, pears etc.). Citric fruits are advised against because they can be quite acidic.

Personally. I'm wary of veg with leaves - again, I remove skins from veg I do eat (carrots, potato, swede etc.). I find peas, runner beans, tomato all give me problems so currently avoid.

Also, already mentioned by Red_34 is dairy - I've stopped it completely in the last 2 months which has cut mucus drastically. Cheese and eggs caused a lot of problems.

Carbonated drinks seem to cause problems for me because they produce wind. So it might be good to watch for foods that cause wind - baked beans, eggs, carbonated drinks, sprouts etc.

As I say, it really is a process of elimination - some UC sufferers appear to have a problem with sugar but i seem to be ok with it (although everything in moderation whilst flaring).

I've also cut out wheat and eat gluten free products, but the jury is out on whether this is achieving anything.

In ref to exercise - I posted a question on here a while back about whether it can aggravate colitis. As ever, there was no conclusive answer, but I now only take light exercise instead of more 'extreme' work-outs and sport. My theory is that if we are ill we should be resting to make it easier for the body to repair itself. Mind you, others have no problems so I guess Rob needs to watch out for changes/feelings during or after exercise.
Posted 1/14/2011 11:17 PM (GMT 0)
Thank you everyone for these responses! Rob and I just went over every single one and composed a list of what we are going to do and try (food diary, diet changes, enemas, etc.). It seems that patience is key, so we will try to be patient as well! Thank you so much for everything...I'm sure you will hear from us lots in the weeks and months to come.

All the best!

Erica
Posted 1/15/2011 1:38 PM (GMT 0)
I've been on Remicade for 2.5 years, and it took me 4-5 infusions plus the right combo of rectal meds to get into remission, so don't be discouraged yet! Definitely give enemas or rectal suppositories a try, and maybe also add a 5-ASA (Asacol, Lialda, Colazal, etc.).
Posted 1/15/2011 3:15 PM (GMT 0)
You definitely need patience with this condition. It can take a long time to heal in there because if you think about it, it's not a very "friendly" place in there that promotes fast healing! lol

Please do not hesitate to ask more questions or concerns that you may have. That is why we are here :)
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