Intro and some question

Hi I'm a 29 year old male and I recently had a colonoscopy and a upper GI done (last Friday). This was after 6 weeks of very bad stomach cramping, and having to go all the time. Once blood showed up, they decided I needed these tests done right away. Right now I either have UC or chrons, the doctor is almost positive its UC, but did some blood work to rule out chrons (my brother has chrons, which is why they wanted to check me). They think I've been dealing with this for quite sometimes, and now that I know I have it, I can remember plenty of flare ups, just none as bad as my most recent.   Currently I am on asocol, prednisone and another which I can't remember the name. Its way to many pills for my liking, but its seems to have gotten my flare up under control thankfully. Ok onto the questions:   1. I read that having UC can cause you to not be able to get as much nutrients from what you eat, so what sort of supplements are good to take.   2. The possible weight gain from prednisone has me a little concerned. Over the past 3 years, I have busted my butt, and dropped 80 lbs, so the thought of adding weight back on is not something that thrills me. My question is, what has everyone’s experience been like on prednisone, and did you experience a lot of weight gain.   3. I work out pretty hard, 6 times a week, sometimes twice a day. I want to continue this routine, but I little worried that I don't want to cause any problems. Is there any known risks to working out hard will having UC. I actually tend to feel better when I am working out, but recently during some of my cardio sessions I've noticed that I've felt like I was going to crap my pants. It never got to that, but it was weird.   4. I don't really take any supplements, mostly protein powder, I will on occasions take an amino acid blend, I have taken creatine in the past, so I was just curious of any of this was off limits now.   5. I am having to modify my diet a lot. I eat a lot of cals, usually in the 2500-2700 cal range. It’s probably 90% healthy, except when I give into a cheat day. This is getting harder and harder as I am having to eliminate foods that cause me issues. I'm on a low fiber diet right now, and the foods I know give me issues are nuts, peanut butter (haven't tried the other nut butters) those are for sure. Fruits and veggies I haven't really tried recently to know for sure, but since I am on a low fiber diet, allot of that is ruled out. SO I was just wondering what others are eating, on a low fiber diet. I know everyone’s different, but I would just like some ideas, as I learn the ropes to my new diet.   I am generally a positive person, and I am trying to not let this bother me. I was pretty depressed leading up to last friday, since I had no clue what was going on. Now I have a new since of hope, since I at least have an idea, and a direction to go in. I've tackled a lot of hurdles over the past three years of my weight loss, so I am going to hit this head on.   Thanks in advance for any help, sry about the long post, but I was super excited to find a community that can give me some insight on what I have   

After my colonoscopy they had pics showing my colon covered in ulcers. The doctor said that's what he believes it is, but he said he wanted to do blood work. He also took a sample, I believe of my colon, or ulcer can't remember which. As far as symptoms, extremely painful stomach aches, cramping, nausea, having to go to the bathroom all the time, most cases it was very urgent, and made me more sick, blood in my stool, mucus in the toilet , diarrhea. They also said my stomach lining was inflamed. I think that was all the symptoms. It's been pretty rough over the past few weeks. What do u mean, I seem to be doing a lot for someone who was just diagnosed, I'm confused with that question. There is two other meds I'm on, but I'm horrible with names, I can let u know later. From what I'm told it is located all in my colon, which is why he believes its UC. Unfortunately I was still out when the doctor cane in, so I didn't get to clarify everything, he talked to my wife, who's a nurse, so I just got the info from her, since after the procedure I just wanted to go home. Hope that clarifies more. Post Edited (wolfehound22) : 8/29/2012 12:25:05 PM (GMT-6)

Hey wolfehound, welcome to the forum. I know a lot of this is confusing at first, and there is an information overload when you first get a diagnosis of IBD. It's a complicated illness and can take a while to figure out. You're lucky to have a nurse at your side. What kind of experience has your brother had with his Crohn's?

I am an engineer and really want to understand how things work, including my gastrointestinal system. When IBD flares, things stop working right and I am compelled to understand that. What quincy was asking, and what I'd want to know, too, is where in the colon was the inflammation?

It might surprise you to know that the medications you listed do not treat the whole colon. Crazy! I know! Inflammation at the distal end (rectum, sigmoid colon) is very hard to treat with oral meds. People with ulcerative colitis have inflammation starting in the rectum and moving up from there. Medications that focus on the rectal involvement are very effective at reducing flares. These include suppositories and enemas. The enemas are usually steroidal or made of mesalamine (the same active ingredient as the asacol). I'd like to see you using a rectal med in addition to the oral. Many GIs don't talk about this kind of medication because, as far as I can tell, they don't want to embarrass their patients. Crazy.

People with Crohn's can have inflammation in the rectum, too. What makes Crohn's different from UC in the colon is the patchiness of the inflammation. UC typically will involve a continuous inflammation, while Crohn's can do things like skip 20" of the colon and reappear. My first colonoscopy identified inflammation in the rectum and cecum. The one after that showed inflammation in the rectum and ileum. All of my upper endoscopies have identified inflammation in the stomach. I approach my disease as if it was Crohn's, even though none of my GIs have been willing (or able) to say this definitively. And I have had problems with nutritional absorption.

I take vitamin D now and flax seed oil. I have had to take iron in the past due to anemia. And I eliminated gluten from my diet, which really helped a lot with the upper GI stuff.

I just remembered they did a biopsies as well, maybe those were the tests they were waiting to get back to determine what I had. I also had to do get blood work done, not sure what for now. Maybe that was my confusion. So hard to get things straight after anesthesia.

Wolfehound, the biopsies should show which kind of inflammation you have. Crohn's typically involves deep layers of the mucosa, while UC is only a surface inflammation issue. Sometimes even the biopsies won't show conclusively which one you have. It doesn't matter a whole lot, since the treatments are the same in large part, but knowing (or at least acting like you know) might give you some direction when you think about long term issues.

UC can be "cured" by a colectomy, since UC will not affect other parts of the bowel. Crohn's cannot be cured this way. As you've seen with your brother, Crohn's can cause long term damage that is not correctable except by surgery to remove damaged portions of the bowel. This is called a resection. It used to be true that people with Crohn's would have their first surgery within 10 years of diagnosis. The introduction of biologic meds has made that statistic less true in recent years. Your brother may blame himself for "not taking care of himself" but the truth is that most teenagers make bad choices and the medical choices for Crohn's treatments haven't been great until recently. Even now the "good" choices come with some significant issues.

It's not surprising that you don't know the results of the scope. And the pictures you got do not tell the whole story. One of the great things about this forum is that you can get a really good understanding of what questions you should ask your GI when you meet for the follow-up visit. You've already gotten a good start on that!

Hi there Wolfehound,

Sorry you're experiencing UC. It's not cool. I have been in a similar position to you (really into weight training and working out) and it took me a long time to get my head around that when you're ill with UC you simply can't ask your body to keep responding to high intensity gym work outs. I was in denial about this for a long time. It's hard to get your head around but by really pushing your body hard at the gym you may be doing more harm than good - at least while you're flaring and on prednisone.

I have mentioned it on here a few times to others who lift weight - my own experience with creatine has been BAD. I attribute it to 2 flare ups I had when i was training. I would seriosuly avoid creatine. Google colitis and creatine and you will find a lot of anecdotal evidence linking the two.

Some people have weight gain from Prednisone, in the past i have actually had some weight loss. It speeds up my metabolism. I noticed (sad to say it) some muscle atrophy too. But it comes back once you're off pred.

Right now the best thing you can do is focus on getting well and rest is a big part of that. Make your UC health your priority and you'll sooner be able to balance things out with traniing at the gym again. I suspect that if you keep pushing yourself at a the gym while on prednisone and flaring that you may prolong your healing.

Just ease it back to low intesnity and halve the number of session you're doing.  Or maybe even have a couple of weeks off traning all together and get lots of sleep.  Getting a good nights sleep is vital to healing your colon.

Keep a food journal and keep eating health as possible.

Good luck and keep us posted on your progress.

Post Edited (Jimbo NZ) : 8/29/2012 5:58:21 PM (GMT-6)

scum1 - Its really trial and error, thinking back, and days I had lots of nuts, or peanut butter, I would instantly be uncomfortable for the rest of the evening, I can say for sure this is a flare up, but something I noticed. I never got real fatigued, well last week it hit me hard Tuesday, and I skipped my workouts for the rest of the week. Back at it this week, but with less intense workouts.

bootstrap - thanks for the link to the site, after reading your posts I am more motivated. You've gone through a lot, but still push yourself to get better. You didn't use this as an excuse, and neither am I. Its good to see that there are some people still pushing hard, even with this sickness.

JimboNZ - you're making a lof of sense, I am definitely on the side of not wanting to give up me workouts. This si something I've worked hard towards, losing a lot of weight, and I'm not willing to give that up. I will opt for easier workouts, or may not push myself. I am going to really just rely on listening to my body, and figuring out what it needs. If it needs an off day, then I will take it, if I feel good then I'm doing my workouts. As far as creatine, I probably won't take it, my two most recent flares occurred roughly two weeks after starting creatine, guess I should take this as not simply a coincident.

insoflo - thanks for the advice, it is pretty overwhelming, I never heard of this until after my tests. Now all of a sudden I'm taking four different meds, with crazy side effects. I'm having to eat things I've been avoiding for years, and being told I shouldn't workout as had. Its frustrating to hear, but I'm not going to allow it to become an excuse either.

Asacol and Prednisone are meant to treat the inflammation in your colon. Prednisone is a steroid that may have some unpleasant side effects. You should read the information your pharmacy gave you, but in summary, prednisone can make you have insomnia, moon-face, gain weight, lose bone mass and in rare cases it can cause psychosis. For me, euphoria and extra energy were the only side effects. Everyone's different but you need to educate yourself. Your GI will have you taper off that prednisone as fast as you can, and since most of your symptoms are already gone you should probably reduce your dose as soon as possible. Call your GI's office tomorrow and ask for some advice over the phone.

The Bentyl is an antispasmodic meant to reduce painful cramps in your bowel. I've never taken it - I hear it can make you drowsy and other unpleasant things. Not sure it's really necessary to treat the illness - I think it's meant mainly to reduce symptoms.

The dexilant is a powerful proton pump inhibitor that should ease your upper GI pain effectively. Once you're done you should follow the advice to take prilosec, but you may find that it is not as effective. Talk to your GI about this next week.

Wolfehound, the prednisone taper schedule your DR gave you is pretty fast, especially the idea of dropping your dose by 10 mg at each taper point. You can discuss other options with your DR. A lot of people find it easier to drop the dose by 5 mg, and to do it more quickly than every 2 weeks. Again, you need to talk to your DR. Don't take everything s/he says as carved in stone. There is a lot to medicine that is variable patient-to-patient and your GI should be able to treat you like the individual you are.

One of the biggest adjustments most of us have to make to having an IBD diagnosis is the concept that it's a chronic illness.  Most of us will end up taking some kind of medication for the rest of our lives.  The Asacol you're taking should be sufficient to keep you in remission once you get there - although you need to discuss rectal meds with your DR and you need to have them on hand to deal with flares.  While there are certainly some people who strive to get off all meds, I personally would not recommend that as a goal, even though I too would like to stop taking the 10 daily prescription and 4 daily supplement pills that I have in my pillbox.  Rectal mesalamine and Asacol have almost no long term risks or side effects so please don't worry about that.

And bring your wife to your GI appointments.

Post Edited (kazbern) : 8/30/2012 8:04:36 AM (GMT-6)

Oh, Aleve, my favorite pain killer and one I cannot tolerate anymore! I admit that I will take ONE SINGLE ALEVE if faced with a terrible headache or really really bad joint pain. But that's it! I broke my own vow last spring and took two doses back-to-back and spent the next week writhing in pain from the gastric distress it caused. It was not worth it!

For headaches now I take tylenol. If I catch the headache at the beginning, the tylenol is usually very good at getting rid of it. I also drink caffeinated tea - caffeine is an awesome headache reliever.

Joint pain is a different topic. As you are doing a lot of work at the gym, you might want to get a physiatrist or physical therapist or someone very skilled at pilates and/or yoga to work with you for a few days or weeks on proper posture, core strength and flexibility. Some of your knee pain and back pain might be due to the bowel inflammation (about 25% of people with IBD have joint involvement) and some might be due to your particular work-out and/or musculo-skeletal issues. Alternating ice & heat is a good way to relieve back pain and knee pain in a pinch.

Yes, frequent use of NSAIDS can cause a lot of problems, even for people without IBD. Walk away from the NSAIDS and don't look back!

Reducing the inflammation in the bowel does relieve inflammation in affected joints, if that is what the issue was. Also the prednisone alone reduces inflammation everywhere, not just your gut.

Not a great day today, well not a good afternoon. Felt good for most of the morning, but been having some small cramping, like I want to be ill, but just not fully getting there. Also having a little nausea, I;m not having an urgency for the bathroom, in fact I've barely been in the bathroom at all the last day or so, but just starting to feel like I was before. I guess it shouldn't be a huge surprise, since I just got on the meds, but man I've been mostly symptom free since I started them, was hoping I wouldn't have them this soon :(

Post Edited (wolfehound22) : 8/30/2012 7:58:41 PM (GMT-6)