Category: Crohn’s

Crohn’s Update: February 2016

Crohn’s Update: February 2016

davidpwahr

It’s been a while since I’ve updated you all (or at least those who may be interested) on how my life with Crohn’s has been going. In brief: very well!

I did have a small flare-up in January which lasted two-three days, but it was mild even by my standards (no vomiting, “controllable” diarrhea, a lot of grumbling, gurgling, and gas). So, the Humira seems to still be doing the job.

I’m taking my vitamins each day (B12, Iron, Calcium, D, multi-vitamin) as per my doctor’s recommendations, and I’m trying to pay much, much closer attention to my diet. My macros are still off as I’m getting more fats than proteins but I’m getting better. I have been in touch with another fellow “Crohnie” though and he says that when he flares up he finds that the fatty, greasy food seems to go down better just like I do. I haven’t seen anything in the literature about this, so it may be imagination, but it was good to hear that someone else has the same experience I do.

Everything else is going fairly well, too. My new job (which I’ve started in September) has been enjoyable and I feel that I’m in the swing of things with a supportive supervisor, staff and colleagues (always a plus), I’m keeping up with my workouts for the most part, and I’m in a play again with a different theatre group which is turning out to be a real joy (“One Slight Hitch” by Lewis Black at the Toledo Repertoire Theatre, February 12, 13, and 14 – www.toledorep.org for tickets and showtimes).

My spirits are good and I’ve found time to take some vacation time with my family (New Orleans over Winter Break and a weekend in Chicago with my brother last weekend). So I’m certain that the relative lack of stress right now has helped to keep things calm in my digestive track.

Goals for the new year are pretty much the same as always: health and happiness. Looking to lose fat, build muscle, etc. like everyone else. I do want to also spend more time with my spiritual health and get back to being more studious of the Bible and my faith. I think that this helps with my overall calmness and happiness as well. Probably very important in the coming year. Election season you know…

Onward!

 

 

My Training V Illness Battle

My Training V Illness Battle

davidpwahr

Here’s an update on my friend Peter over at Digesting Dumbbells. Like me he suffers from Crohn’s. Unlike me, his case is much more severe and he refuses to let it define him.

Source: My Training V Illness Battle

Crohn’s Update: June 2015

Crohn’s Update: June 2015

davidpwahr

Thought I should update everyone on my Crohn’s and general fitness since it’s been awhile. The good news is that overall I’m doing well. The Humira seems to be keeping the Crohn’s in check, though I have had a few episodes of vomiting (3 since starting the treatment) and a few days of low activity causing me some intermittent pain and lack of appetite. These periods have coincided with me becoming overly tired or bad weather (thunderstorms). However, I haven’t had an episode which has kept me from work or other activities.

Also, I am lucky in one other way – I have doctor’s orders to avoid broccoli! His thought is that because it is a high fiber food it’s possible that it can get caught in the stricture (damaged area) of my intestine and cause the pain. I told him that it would be difficult but somehow I would go on without eating broccoli. I also offered to avoid a variety of other vegetables if it would help. He assured me to just test avoiding the highest fiber foods and he thought I could get by.

In the workout world, my elbow pain has subsided so I can lift again which is good. I still plan on running (walking?) in a 5K, the Rose Run, in mid-July. Not sure if I’ll do as well as hoped since I haven’t been doing my cardio as I should over the past couple months but we’ll see. My weight is not going up but it’s not going down too much either. However, I don’t feel as “fat” as I have and my pants are starting to literally fall off me. I’m hesitant to go down a size though because there are times I need the extra room due to bloating from the Crohn’s.

Time to set a couple new fitness goals I think…I’ll get back to you all on those.

Onward!

Crohn’s and Fitness Update: Still Here

Crohn’s and Fitness Update: Still Here

davidpwahr

It’s been a while since I posted so I thought I’d catch everyone up with what’s going on with me health and fitness-wise.

Crohn’s: I’m past my “starter” doses of Humira and on my regular dose now for almost two weeks. Not feeling as good as I did with the starter kit and I’m thinking that maybe one shot every two weeks won’t be enough. I’ve got a couple more shots before I see the doctor next so we’ll see what he thinks.

Fitness: My left elbow has been so sore that I have avoided any lifting for the past week (even when I just do legs the arms seem to get involved a little). This morning was the first morning in quite a while that I did not have any obvious pain in the arm when I woke up so  my resting it seems to be working. However, I’ll probably end up seeing another doctor about this too…

Diet: Oddly enough, I seem to be losing more weight when I eat more than what MyFitnessPal says I should. Not sure why, especially since my exercise is down I should be gaining weight. There’s no way I’m in “starvation” mode with the 2,100 calories a day I’m eating but I’m going to be playing around with my calories a little more to see what happens.

Overall: Stress levels are moderate – some concerns about work but nothing I haven’t been through before and some new opportunities are presenting themselves. Keeping active with outside interest so all in all I’m doing okay.

More later – onward!

Update: One Week on Humira

Update: One Week on Humira

davidpwahr

Well, I’ve been on Humira as a treatment for my Crohn’s now for one week and so far, so good. I haven’t had any of the short term side effects except for a little muscle soreness the first day. I’ve already noticed improvement in how I feel each day, though I have to admit that every time I eat something I expect that I’ll have pain – but so far I haven’t had any. I’ve even noticed that there are times where I don’t feel my “gut” on the inside. However, I am still a middle aged man so I don’t want to push my eating to the limit – indigestion can happen to anyone after all. I have also noticed that my bowel movements are changing (stop reading if you don’t want to hear about normal bodily functions) and instead of going two or three times a day I’m down to about one without the bloating that constipation would bring! My usually sore “bottom” isn’t and that in and of itself it actually a remarkable thing.

So, in brief, I’m very hopeful that this new treatment continues to work for me.

In exercise news I’ve developed a pain in my elbow. At first I thought it was “tennis” elbow but after further web searching and self-diagnosis I think it is actually “golfer’s” elbow (on the inside of the arm instead of the outside). My guess is that I strained it while weight lifting. The bad news is that it’s difficult to curl when you can’t lift the weight without a sharp pain. Looks like I’ll have to put off “loading the guns” and focus on legs and cardio for a little bit. If the pain doesn’t ease up it’s off to the doctors again.

It’s always something…

Onward!

Crohn’s Update: Humira

Crohn’s Update: Humira

davidpwahr

Well, after what seems like years (it’s only been weeks) I’m finally on Humira (adalimumab). You may remember that after finally having my Crohn’s re-diagnosed my doctor thought it would be best to put me on some new medication in an effort to avoid surgery in my future. I was, of course, all for this.

However, I didn’t realize what it took to get the medicine that I was prescribed and now have a better appreciation of what some friends and family have been complaining about. Because of the expense of Humira my insurance company had to pre-approve me getting it (despite the prescription). Then once it was approved the prescription had to go through a specialty pharmacy because it needs to be kept refrigerated. So, I can’t get this picked up at the local Walgreen’s I have to call in each month to have it shipped to me (not a huge problem, but not what I’m used to). Then there is this entire “support” team to monitor me while I take it. An “ambassador” to check up on me every couple weeks, a nurse to train me on how to take the injections, and others. I think I understand why it costs so much.

The good news is that I took my first dose yesterday. I start with 4 doses the first day, then two weeks later I take 2 doses, and then 1 dose every other week from then on. Not a bad schedule as far as life-long medicines go (if not life-long than at least until something better comes along). And the injector “pen” that I use really does make the injection fairly painlessly.

I did have a slight headache yesterday and some muscle soreness (among the least of the side effects) but those seem to have passed. But I noticed something else odd today…I couldn’t feel my insides. There were no odd rumblings, no twinges of pain every couple of hours, no after lunch ‘bloat.’ I don’t know how quickly this stuff is supposed to work and it’s possible that some of the effects may only be of the placebo variety but still – I think that this may be the start of something good.

Unless I get lymphoma (another rare side effect). That would be bad…

Onward!

Crohn’s: Pills, Pills, Pills – Which Ones To Take?

Crohn’s: Pills, Pills, Pills – Which Ones To Take?

davidpwahr

Well, my health journey continues with mixed results. I had my appointment with my gastro doctor to talk about my latest tests, discuss treatment, and to take some more blood for additional testing. We agreed that the best way to avoid future surgery was to start some new drugs one of which is Humira, which seems to be the latest “wonder” drug, and the other being Imuran (aka Azathioprine). I can’t start the Humira until my test for Tuberculosis comes back but he thought I could start the Imuran right away.

For those who don’t know, Imuran is an immunosuppressive medicine used to treat a variety of immune diseases to reduce the activity of the specific disease which in my case is Crohn’s. There are side effects, of course, but the biggest concern is that by it’s very nature it reduces the white blood cells in your system. Well, I leave the doctor’s, go to the pharmacy and pick up my prescription and take my first pill. Then it was off for an afternoon of filming “Necroland” (I’ll eventually be listed as a cast member on ImDB!).

As I was heading home from filming the doctor calls (don’t worry, I wasn’t driving) and he tells me that I should stop taking the Imuran. He had some of the lab tests back already and apparently that on top of my vitamin D and calcium deficiency my white blood count is already very low – as if I was already taking the drug. He’s not sure what to make of this and it may be a testing error but for the time being, and to keep me from getting sick with something else, we need to be safe and keep me off the drug. We may also have to hold off on the Humira but won’t know more until the rest of the tests come back in.

The good news is that I’m feeling pretty healthy for the time being (occasional queasiness and bowel issues but nothing major since last December) and I don’t have any other symptoms for some of the horrible diseases which a low white cell count might indicate (Google, a friend and a foe at the same time). So, we’ll keep on taking test and see what develops.

Oh, and I’m anemic – due to the Crohn’s – and really need to take my iron every day which I hate. If anyone has found a brand that doesn’t upset their gastric inner workings please let me know!

On the fitness front, things could be going better but I’m staying within my calorie goals and this morning my weight is back down (last week I was up four pounds). Strength could be better but I was able to increase weights in several lifts and am feeling confident enough to move back into the free weight room with the “big boys.”

This is the last week of my fitness challenge with a couple of friends. I’m not sure how they are doing but I have high hopes that I’ll win based on my weight loss alone. I haven’t seen much improvement in my various measurements though my pants are clearly looser my sleeves aren’t getting tighter. I’ll of course let you all know how that turns out.

Onward and forward!

Crohn’s or No Crohn’s: The Quest Continues

Crohn’s or No Crohn’s: The Quest Continues

davidpwahr

Well, two days ago I underwent yet another colonoscopy to determine if I really have Crohn’s or not. This time it was a “double balloon” procedure. I’m not entirely sure how the device worked but the upshot is that the doctor and his team were able to go further up into the small intestine than before. The prep for this procedure was more difficult than before as it required two full days of the “clear liquid” diet. It’s been a long time since I’ve been as hungry as I was after the procedure!

The good news is that the procedure was successful and I got through it without any difficulty, at least so far as I can tell. I was completely unconscious for this one as the “twilight” drugs used previously aren’t sufficient as this procedure is more painful than a standard colonoscopy. The bad news, the fistula which my CT Scan indicated still was not found. So it is likely that I’ll now need an upper endoscopy to see if they can find the fistula.

Biopsies were taken again. It will take a couple weeks for the results to come in and before we know if Crohn’s is proven definitively or not. Once again, there is internal evidence of the damage that the Crohn’s (or whatever) has done but until the biopsy it is all “theory” I suppose.

Of greater concern is the fistula which cannot be found. From what I was told earlier I believe it is likely that I will need surgery to remove it, but if they can’t find it…well, no operation on something that can’t be confirmed.

Other good news is that for the past month I haven’t had any flare-ups (knock wood). Since the procedure I’ve felt a little “tender” but nothing debilitating.

So, for now I play the waiting game…

Onward!

PS – workouts have been going well and the extra weight is coming off slowly but surely!

Crohn’s Holiday Update

davidpwahr

Just a short post today to update the status of my Crohn’s (and/or other mystery condition) this holiday season. So far this week my “gut” has been remarkably quiet. I had some problems a week ago – which struck during the annual holiday outing with the office sadly – but I went through all of Christmas Eve and Christmas Day without any incident. This was even after eating popcorn two days in a row (which sometimes seems to cause me issues).

My energy is okay – not too tired, but not too energetic either – and overall I’m okay and think I feel pretty much as a “normal” person without an IBD would feel (not really sure of course).

In other good news the pathology report from my last colonoscopy did come back and the polyp that was removed was deemed to be “hyperplastic” which means, according to the American Cancer Society website at least, that it was benign and nothing to worry about (hurray!).

I am scheduled for what is called a “double balloon endoscopy – colonoscopy” on January 29th. This test is designed to go higher than the previous one, which if you’ll recall came back pretty much normal. There was some “focal distortion,” indicating healed injury, of the Ileocecal valve but the etiology (causes) was not apparent. But, still no definitive proof of Crohn’s. And if surgery is needed it won’t be done without this evidence. Though my doctor does say that there is a 95% chance it is Crohn’s. He is also concerned that the Crohn’s could have become lymphoma over the years and wants to rule this out as well.

Another fun thing, by the way, for Christmas I got an “UP 24” (by Jawbone) to help me monitor my overall fitness. So far after using it for two days I’ve discovered that I don’t walk enough (almost 2,000 steps short yesterday), I eat too much (I told you I was feeling good) and my sleep is restless at best. Hmmmm…like I needed a new app and device to tell me all this! I’m also trying to make better use of the GI Monitor app to better track my IBD symptoms. I’m not doing as well with that as I could. But, I’m off work until Friday, January 2 so I’ve got some time to break in a few new habits.

All in all, I’m looking forward to the New Year.

Onward!

Crohn’s or No Crohn’s – A New Wrinkle

davidpwahr

So, I got a call from my gastroenterologist today. I thought he was responding to an email I had sent earlier in the day concerning this week’s flare-up of my Crohn’s but no. He was calling with the results of the biopsies taken during my recent colonoscopy…

Now, I never take it as a good sign when biopsies come in sooner than expected and when the doctor takes the time to call. But, this call as one of those “mixed bags” of news. First what most people would consider the good news: no Crohn’s was revealed by the biopsy. The samples taken were perfectly normal despite evidence of previous “injury” (his word not mine) of the area.

The bad news: what we are looking for must be further up the intestine that thought. We need to look again, but this time go higher. Good news: there’s a new state of the art (and presumably expensive) test that we can do to look further. Basically, another colonoscopy with an even longer hose! Yay…

So, I go back under the “Twilight” drugs in 4-6 weeks (still have to have the procedure scheduled) and have another colon cleansing. I hope that I don’t get used to being completely empty (so empty that last time I whistled when I walked – and not using my mouth…think about it).

Why keep looking? Several reasons, without a biopsy there’s still a slim chance I don’t have Crohn’s. It is possible for Crohn’s to have changed into a more serious condition such as lymphoma (i.e. cancer) and we need to rule that out. He does admit that this is unlikely, especially given how long I’ve had the condition but best to be safe. Also, I think he really believes that surgery is in my future and no surgery will be considered without a biopsy confirming the Crohn’s.

So, here we go again! Weeeeee! Maybe this time I really will glitter after getting the “Twilight” drugs. I can only hope.

Onward!