First time writing, just some questions

I've followed off and on over the years since I was first diagnosed back in 2004, but have never written on this site.

A bit of background info:
I'm 23 yr old female. Currently a full-time student, part-time hostess. I was diagnosed back in October 2004 (17 yr old). I had become so sick I lost almost 30 lbs over a month. After about half a year of trying to figure out what was wrong, I was put on a few different medications, pentasa and entocort, for sure. These helped a little bit, though it took me a while to get to a point where I wasn't so sick. Over the next 2 years, I didn't gain hardly any weight back. I was still very ill. Once I reached 20, I had gained back all the weight, and my GI doc took me off all medications. I started going into a flare-up again, the pain came back, and I started to lose some weight, but because the numbers (c-reactive and albumin) weren't bad, he didn't want to put me back on anything. It started to interfere with school, so I went to get a second opinion. The second GI was a quack. He told me it was absurd to suggest a person my age could have and IBD, and that I only had an IBS. I followed his regimen of antispasmodics for just about 6 months before I couldn't take it anymore, and I went and got a third opinion. This doctor is much nicer and listens so much better than the other two. And I found him just in time too, because I've been going through a fairly bad flare-up.

When I first met him, he did the usual round of scans and stuff, since I hadn't had some in about 2 years. I have inflammation both in my ileum area, and mildly throughout the lower small intestines. He prescribed me a 800mg asacol 3 times a day, and prescribed tramadol for pain when I really needed it. This worked for a while, until I flared up during the past holiday season. I got a flare-up so bad that it spread to my lower spinal region. I was achy all over my hips and spine. I could hardly attend my classes, especially since the weather was so cold (it made it 100times worse!). I spoke to my GI, who told me to go to my GP to make sure he didn't see something else going on (like rheumatoid arthritis or ankylosing spondylitis , both of which run in my family). The GP saw the inflammation, but said my symptoms didn't seem bad enough to be either one, so I was prescribed a 12day regimen of prednisone to knock the inflammation down. After that, I saw my GI and he started me on entocort, 9mg a day because my c-reactive was still high, albumin was low, and I was still having some symptoms. It helped, and I was feeling better for a few months. Then about early March, I started becoming really sick again. I started going to the restroom 6+ times a day, having accidents, not waking up from sleep to use the restroom. And then I lost 10 lbs in 2 weeks. I got in to see my GI about 2 weeks ago. I am now on prednisone, starting at 20 mg a day, twice a day, decreasing by 5 mg a week. If this doesn't work, I'll be going on Humira. This is my first time to use the stronger steroids and even speak about using the TNF, so I'm kinda nervous.

Anyways, the main reason I'm writing is this. I am prescribed tramadol for when I really need it. Ever since starting the prednisone, I have had LOTS of constipation (which I guess is better than the alternative). My bms are definitely not regular, going about once every 4 days. The stool is very solid and oh-so painful to pass. I don't even feel like I fully evacuate at all. The pain I feel with this solid stool is much worse than the pain with diarrhea. At least the pain with D is only in the most sensitive areas, but the pain with C is all over my abdominal area. I feel it anywhere from right by my stomach to my colon. And its so sharp. Its like being stabbed in the gut. I don't like taking tramadol though, despite all this pain. I hate both the idea of being reliant on a pain reliever and the way the pain reliever makes me feel. I become lethargic and have trouble with my motor skills. But, with the way the pain is now, I can hardly function. In the past two weeks since starting the prednisone, I've had to miss work twice because I've felt so bad. And my apartment has become a mess! The pain lasts all day, whereas D pain was only for a consecutive hour tops.

I need help getting my bowels to move more efficiently and with less pain! Any suggestions? I'm willing to eat/try anything! I eat only whole wheat items to get fiber, but maybe I'm getting too much? I've been doing stool softeners, but that isn't helping fast enough. And I've tried caffeine, but that doesn't appear to be working as lately it just brings more pain. I've heard peppermint teas work... Any suggestions would be so appreciated. The prednisone, along with the pain, has ruined my sleeping schedule (I can't fall asleep til like midnight, and then I wake up at 4 from pain...never have I been so exhausted!).

How about trying total enteral nutrition (full liquid diet using meal-replacement drinks designed for this purpose)? It is proven in clinical studies to be effective in inducing remission (like steroids but without the side effects), and also, which would be of particular importance for you, significantly increases intestinal motility. If it works for you, it could have a major effect on relieving the chronic constipation.

The doc plans to put me back on a maintenance dose of asacol or entocort if the inflammation goes down; otherwise, we will be trying a TNF. I'm guessing it is, though, cause of the constipation, I've just never had this amount of pain before (nor have I been so constipated in about the past 6 years).

I know prune juice is bad, as I tried it once and it made me extremely gassy. The pain from the gas is just too much. Yogurt has helped me in the past (I think, its hard to tell sometimes). Probiotics are what is in yogurt, right? So, should I take them through yogurt, or are there pills that are recommended? Are certain probiotics better than others? I have a fairly large health food store in town, but its always really intimidating because I never know what I'm looking for.

I was also thinking about doing a liquid diet for a while, until I've passed the food currently in my system, and then introduce food slowly. I want to go about this in a really safe way though. Any readings I can read about a safe liquid diet? Or any recommended brands to get full nutritional value in drink form? I have the ability to make drinks myself if anyone has a list/book of recipes too. I'll also try colace.

Thank you all for your help. Its really good to read what other people go through and to have someone to talk to about this. I've just never been in this much pain, and I need to nip it in the bud. I'm one of only two hostesses at a small local joint, and I can't be missing work. They really need me there.

 

Hello Japey,

My son. like you suffers with constipation and like you prior to his diagnosis was eating lots of whole wheat/fibre foods but we were told(after diagnosis) no wholemeal/brown bread, spaghetti etc and minimal fruit and veg. In areas where you may be ulcerated/inflammed these type of foods can do more damage than good.

He went on to enteral nutrition for seven weeks and suddenly had to cope with the big 'D' several times a day-it gave his system a chance to recover though(as well as getting some nutrients) and what with that and various drugs(pentasa/entecort/azathioprine) he is now eating normally and has gained approx 22lb.

Unfortunately, the Tramadol is going to slow your innards down and may even plug them up. If you can handle it, it might help you to cut back on the pain meds a little (or entirely) and see if that helps you at all. I don't want you to be in huge amounts of pain, though, so only do this if you think you'll be able to cope.

If you are concerned, it might help to talk to your doctor. There are "gentle" laxatives that can be prescribed to help clear you out... but they aren't always entirely pleasant to use, as you can imagine.

Welcome,

Ivy.

TMI is good information! I've been diagnosed for a while now, so I'm used to describing all my different stools. :) I rarely take the tramadol because I hate taking it. The thought of needing a pain reliever to get by is so depressing, that I only take it when absolutely necessary. So, lately I take it maybe 1 pill a week for when its so bad but I need to get out. I don't think its the pain relievers causing constipation.

I'm definitely going to get in more fluids, and I'll try drinking warm herbal teas (I can't drink warm water, especially here as it tastes like the lake it comes from). Do I need to be concerned going on a liquid diet for a day or two? Should I not exceed more than two days? Also, when I do go to the restroom, I have to strain to get it going and sometimes I strain through the whole ordeal. Otherwise, I just feel pressure and it never comes out even if I relax. I've sat on the toilet for 30+ minutes just waiting and waiting until finally I got tired and pushed really hard to get it out. I know that's bad to do though. Anyways, once it is out, I still feel pressure in my rectal area. I often had tenesmus when I had diarrhea, but the feeling to go was higher up in my intestines near my ileum and not right around my rectum. The pressure isn't painful, but more of an annoyance. This might be something I need to talk to my GI about, in case it is a sign of something more.

Kazbern - When I was first diagnosed, I was on pentasa, but that was back in 2004 when I went to a different GI. After my first "remission" and then a new flare-up and new GI, I was put on asacol which worked for a while. Then got into the major flare-up which started this past holiday season and tried entocort which didn't work. Now am on the prednisone. I am only on prednisone right now. As we taper off, I'm going to go back onto either asacol or entocort, dependent on how I'm doing. If I get worse, then I am going to go to Humira.

Normally I do exercise a bit, but mostly yoga/stretching/muscle toning type exercises. When I get hot, especially since I started the prednisone, it causes my stomach to really hurt.

Its really weird for me to have C as I have had D since when I was first diagnosed. I don't think I've ever really had a bad C since then. I only have had slow bms, but not actual hard, dense stools. Before I couldn't go for a few days, but the stool would still be very soft. Right now the stools are extremely dense, like rodent stool, when I am finally able to go.

Meh. If there's one thing Crohn's has taught me, it's the astonishingly wide variety of stools there are. Even diarrhoea is amazingly varied. It's not just a uniform brown liquid, but many different types of brown liquids :p

I didn't think it was the Tramadol, really. Partly because you only take it occasionally but also because you were taking it before the constipation started.

Herbal teas are good, but I feel like you should drink some plain water if you can (doesn't have to be warm; it just shouldn't be ice-cold). Can you buy bottled water?

I'm not an expert on liquid diets, but going on one for a couple of days should be safe. Any longer than that, though, and you should probably clear it with a doctor.

Are you getting any urges to go? If so you should only try going during an urge. And even then it may not work - the urge may have disappeared by the time you're on the toilet. It's maddening when that happens, especially if you're bloated, uncomfortable and in pain and just want to go. You just have to keep patient; eventually the urges will get strong enough that you will be able to pass the stool. I've had times where I've practically had to coax it out centimetre by centimetre at a time, but more often than not once it starts to come out the rest follows quite easily.

I did find with bad constipation that it would begin with me not having any urges and then, after 2 or 3 days of not going, the urges would kick in and gradually get stronger and stronger. But at the same time my rectum would appear to be inert and incapable of pushing the stool out =/ Difficult one. And luckily something I only rarely get but over several years I have had enough time to learn how to deal with it. It's better to relax completely; don't strain, don't clench anything. Keep your knees raised. Something should start to move. Strain gently to help it along but stop if it's not going any further and relax again. By such tortorous means you should get the stool out.

*reads last two paragraphs* I don't know whether to be embarrassed or proud by the deep-found knowledge of bowels that Crohn's has given me.

Mind, I fall down on the tenesmus part anyway. It's not something I've ever really suffered from. It could be related to inflammation in the rectum, so I would ask your GI about it.

Nice cup what laxative do you recommend for a suppository? ducolax? I usually don't ever get constipated but Dr. suggested I try a probiotic called Nu-Zen and the only result I've found from it is constipation. Also why would warm vs cold water affect absorbtion? Most water's absorbed in the colon and it's all warm by then.

Japey,

In answer to your question if there's anything "I can read about a safe liquid diet," there is a book about enteral nutrition for people with Crohn's disease available through the the HealingWell online bookstore (look in the Crohn's disease category) and through the CCFA online bookstore.

Grandpato2 - Ducolax should be grand. I wouldn't take suppositories, though, except in emergency situations. They're not pleasant to take...

Water passes through the system miles quicker than food. If it's ice-cold it probably won't have cooled to body temperature by the time it reaches your colon. The body can't use water while it's cold, so it has to expend a certain amount of energy heating it up:

health.howstuffworks.com/question447.htm

That said, ice-cold water is still water and will still supply your body's water needs. But warmer water just feels more readily 'absorbable', even though that's not a very scientific thing to say. Personally, unless the weather is really hot, I find ice-cold water quite hard to stomach.

Japey - Good luck. Do feel for what you're going through, as constipation is more of a misery to me than diarrhoea. Wouldn't eat too much white rice, though, as that's a binding food :-/ (Look up the BRAT diet on google to see what I mean...)