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Ulcerative Colitis
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Posted 8/27/2010 10:51 AM (GMT 0)
Hi all,

I am new to this forum and forums in general. But heard that it is good to get feedback from people! A brief background on my story. My husbad 31 year old fit and healthy took difene the anti inflammatory drug on 2nd July for a muscle injury he got from training for a triathlon. To cut a long story short he had a severe reaction to it - really bad stomach cramping, diarrhea, fatigue, loss of appetite and weight loss. Between going back to the doctor and being extremely laid back he did not see a specialist for 6 weeks - Yes 6 weeks!!! After a colonoscopy was done we went back for the pathology report on Tuesday to find that he has ulcers in his large intestine - accute and chronic. They can't rubber stamp the chronic at the moment becuase his bowel was so inflammed from the difene BUT the specialist (really nice lady) is leaning towards UC as his reaction was so severe to difene.

This has all come as a big shock to us - as you guys can imagine. He has been on medication for 2 weeks now and is slowly but surely getting better.

Are there any other partners of colitis sufferers on this forum? I would love to get your feedback as I am struggling with coming to terms with it. My husband is extremely laid back and a very positive person which is helping the situation A LOT.

His current medication is Calci Chews for 3 months, Pentasa for 6 months and steroids for 2 months (sorry name has escaped me)

The specialist is confident that my husband can return to full health with management therapy or no therapy - All TBC.

I also have a few questions if anyone can help that would be great 

Drug - Therapy - I have heard it is trial and error. How do you quantify if something is working eg the one area that is not really improving for my husband are his stools - eg it is still diarrhea with a frequency of 4-6 times in 24hrs. Should we be concerned after 2 weeks on meds or does it take longer to see formed stools again?

IBD seem to be on the increase - since speaking about my husbands condition a huge amount of people have said "x has that" or I know 2 people with it. It seems to hit relatively healthy people which is VERY frustrating.

Diet - any tips or again is it trial and error? He was told to stay on low residue for the moment but he is finding this difficult.

Steriods - I have also heard that people can puff out with steroid use - does this usually happen with steriods used over 2 months? He is on 8 tables a day for the first week and then reduces them by one tablet per week over 2 months

I am rambling on but it would be great to get your feedback. I also hope over time to be able to give my story to anyone that I can possibly help

Thanks a mill in advance

 

Posted 8/27/2010 1:11 PM (GMT 0)
Hi, and welcome to the forum!
There are a few other partners of UCers on here.
Yes, the diagnosis is a shock.

He may puff out some with the steroids, but that will reverse once he's off them. Prednisone does increase appetite (as one nurse friend said, she wanted to not only eat dinner but eat the legs off the table as well) - so if he can steer toward low-salt, low-fat things, that will help.

Diet. We're all different. For me, in general I eat what I want, but in a flare I stay away from "scratchy foods" - corn, popcorn... I eat my vegetables cooked, few or no salads; I steer clear of gassy foods, fried foods (digest challenges to a lot of folks even without UC.) But we're all different - a food journal might be helpful.

Has he tried probiotics? Especially since his onset was after medication, they might help. In addition to the familiar OTC ones, there are higher-powered ones out there... VSL (and a prescription strength VSL Double Strength, Ultimate Flora Critical Care, on and on... peek at folks' signatures for some ideas.

If he does have UC, most of us are on the Pentasa-type medication (a 5-ASA medication, there are several formulations) for life. They help us stay in remission, and if we go off them they don't always work as well when we start back on them. So... some of us increase and decrease the dose according to remission/flare, but we stay on it.

Though some of us cannot tolerate fiber, others (myself included) find that a fiber supplement, though sold as a laxative, helps in the opposite way - it clumps my stools together, bulks them so they're more comfortable passing. Metamucil, Citrucel, Benefiber, and so on....best to start with a tiny dose and gradually increase to the designated level in case it doesn't agree.

Patience is one of the difficult but necessary things about UC. If he's improving, great! But it is a slow thing.

Again, welcome!
Posted 8/27/2010 1:23 PM (GMT 0)
Just to answer the steroid question, I do get very puffy with Prednisone very quickly, but it does come off me quickly when I stop using it (if I ever can stop using it for very long, but that's a whole 'nother issue).
Posted 8/27/2010 1:33 PM (GMT 0)
Many thanks for your feedback. No to the probiotics but I have heard they are helpful. I will head to the pharmacy after work and see what one they can recommend.

In relation to stools - when should he be seeing an improvement in them. He is on the medication 2 weeks today but still having lose stools 4-6 times a day. The urgency seems to be gone but they don't seem to be getting firmer. Is this unusual or am I being impatient?

Your last point about being patient - I think this is the struggle at the moment but we will get there!

I will let you know if he gets puffiness from the steriods to keep you updated.
Posted 8/27/2010 1:42 PM (GMT 0)
Give the stools time. 4-6 times a day isn't all dramatic around here, sorry to say! But they shouldn't be loose.
Check out the Bristol Stool Chart.... I think there's a post listed as Stool Chart in the past few days' posts.
if it were me, I'd cut down fruits and veggies and add fiber - but I don't know your life or what he's eating.
Hang in there!
Posted 8/27/2010 2:00 PM (GMT 0)
This is all so new to us that we don't know what is normal or not in relation to stools! One thing is for sure we have never spoken about stools so much in our lives!! He has cut out fruits but not veggies. We still have vegetables with our dinner mainly carrotts and parsnips but practically mushy to make sure they are completely cooked. He seems to tolerate that well.

When he eats he doesn't have to go straight away. Its very bizarre most of his bowel movements are during the night - 3 on average and he may go through the full day with only one movement. The specialist told him to stick to low residue at the moment which we have done and completely eliminated fibre!

Because he seems to be improving in all of the other areas - more energy, less urgency, generally feeling better in himself the stools seem to be the one thing missing at the moment. He is still quite pale but the doc said its because of weight loss and loss of nutrition when he was really sick for 6 weeks.

I am reluctant to start the fibre supplements just in case it reacts with the medication. We might review it over the next week and then see.

To give you a general idea of what he is eating
Brekkie
2 slices of toast with honey followed by actimel
Mid morning - scone with butter or plain muffin
Lunch - white bread sandwich with ham and cheese or white roll with ham and cheese
Snack - yoghurt or plain biscuit
Dinner - fish, veg and mash or ham pie and home cooked chips, lamb, potatoe and veg
Ice Cream

It sounds like a lot but he is 6foot 3 and lost 1 stone 1/2 over a 6 weeks period before action was taken.

I am actually feeling much better being able to interact with people who are going through it - its very comforting to know that you are not alone

Thanks again
Posted 8/27/2010 2:09 PM (GMT 0)
We're all different, but nothing in his diet particularly jumps out at me.

It's great he doesn't have that eat/bathroom urgency.... but the getting up in the night thing; it's obviously he still has some inflammation.

The meds he's on could just work over time.... one thought is, a lot of us her use rectal meds - either 5-ASA (like the Pentasa) or steroid, to attack from both ends. These come in small plastic bottles that one administers at bedtime and the liquid stays in, and directly hits the inflamed areas. You might ask the doctor about them, if his improvement doesn't come along as quickly as you'd like.

My son got out of a flare this spring, in which he was getting up 4-5 times a night, largely with upping his Asacol (like Pentasa) one pill, and adding a probiotic and a couple of Metamucil capsules. (In my experience, that fiber is more gentle than fiber from food - but again, we're all different.)

Hang in there!
Posted 8/27/2010 2:18 PM (GMT 0)
That is a great idea about the rectal meds. I will say it to him this evening and get him to ask the specialist about them. It makes sense that fibre will bulk out the stools, again, I think it is definitely worth mentioning to him and see what he would like to do.

The only dramatic reaction he has had to food was greasy chips and burgers a few nights ago - they didn't settle at all and the urgency to go came back. We won't be doing that anytime soon..... Other than that food seems to be ok at the moment. I don't think he will be having curries though for some time.

I am going to go and research the stool chart you mentioned.

Thanks again for all your feedback - it is very useful. I will keep you updated on things over the coming days/weeks.

Do you also know if fitness and training is feasible? Obviously not at the moment but is it unrealistic to think he can go back training next year? He was in training for triathlons. I have heard that physical activity can help but not to push it in this area?
Posted 8/27/2010 10:11 PM (GMT 0)

This is just me, but the thing that really stands out for me in his diet is the amount of wheat/yeast...(bread/scones) in his diet. By trial and error, I discovered I developed a yeast intolerance and even a wheat intolerance/sensitivity since I was first diagnosed with UC. I had the gamut of tests done, but they all came back negative. On my own, however, I feel soooo much better if I avoid yeast and limit wheat intake. Yeast and too much wheat give me loose stools. I actually got rid of all UC symptoms by going grain/yeast/sugar-free (antifungal) for a period of time. Maybe something...or nothing, but maybe eliminate grains/yeast and see if that doesn't help him feel better. Sounds like he needs to change something in his diet...it's not working for him. Those on the specific carbohydrate diet, which is "similar" to what I followed, have found good results, as well.

That drug has some nasty side effects. Hope your husband feels much better soon.

Posted 8/27/2010 10:52 PM (GMT 0)
Hi and welcome.  I am not a parter, I actually have the UC but I just wanted to second the opinion to look into the rectal meds.  Not super fun, no, but super helpful for me anyway.  I opted for the 5-ASA enemas first (Rowasa in the USA) and they helped me ALOT! There are also steroid enemas as well.

Also, if he does indeed have UC, he may want to consider staying on a maintenance med regemine.  You can see mine in my siggy.

Everthing is different for different people but I've heard enough stories of 'I wish I'd stayed on the maintenance meds' to keep me on them.

But to each their own.

Do look into the probiotics, you may have to try a vitamin/health food shop.  Get one that has 10 billion units, anything less really isn't worth his time.  Check people siggies to see what they use.

Also, are the docs completely sure he has UC?  Have they checked for anything else?  C-diff?  Have they done stool samples and/or bloodwork?

I know it's overwhelming, but you want to be sure you are treating the right thing.

Hang in there and keep us posted.  Ask any questions you like, someone will know the answer...or have an opinion...lol

Posted 8/28/2010 8:26 AM (GMT 0)
Hi there many thanks for the info. They are nearly positive that he has uc. They didn't take stool samples but did blood tests. Yes I will definitely look into probiotics for him. I just feel like if his stools were getting firmer that we would both be feeling better. We probably just need to give it time for the meds to kick in. We are back to the specialist in 6 weeks. Hopefully at that stage we will know more. Thanks again for all advice.
Posted 8/28/2010 8:36 AM (GMT 0)
Hi kim123. Thanks for your feedback. We will consider his diet. It's early days with meds etc so I don't want to cut out anything just yet as the food he is eating seems to sit well for him at the moment. What kind of side effects should we be looking out for?
Posted 8/28/2010 12:43 PM (GMT 0)
I was talking about the drug he took- difene. Not the drugs he is on now.
Posted 8/29/2010 7:30 PM (GMT 0)
Hi songlady - you mentioned in a previous post to give the stools time but that they shouldn't be loose. If you wouldn't mind elaborating on time - a few weeks, months? My one concern at the moment is the fact that his stools are loose even though he has been taking the medication for 2 weeks now. Is this something we should bring up with the specialist or leave it until we meet her again in 6 weeks time?

Basically the following happens

Wakes up and goes to the toilet
Goes the full day without any movement and between late evening and the following morning will do 3-4. Over the last number of days it has averaged 5 in 24 hours. When he was really ill with no diagnosis or medication he was going up to 10 times a day with urgency

Also it would be great to get feedback on pale complexion. My husband is usually has a nice glow to his skin but over the 6 weeks of diarrhea and loss of appetite he lost over 1 stone and got paler by the day. I presume this will come back over time as he builds himself up again?

I also bought a probiotic over the weekend - he is going to talk to the specialist about possible interactions with the meds but hopes to start taking it soon.

Many thanks again
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