Crohn's Disease

[davej]

I'd had bad experiences with diarrhea in the past few years that lasted a few weeks, but it always just went away. So when it happened again last month I didn't think much of it. For two weeks it wasn't so bad, just a few times a day, then it took a turn for the worse. I started having to go every 30-60 minutes, lost my appetite and couldn't keep hydrated. Two days later I couldn't keep food or water down.

I dragged myself to the hospital to find that I had already lost 20 pounds. The inflammation had ran through my entire GI tract. I had been drinking LOTS of gatorade and started getting sores in my mouth, I thought it was from all the sugar and salt in the gatorade, turns out it was from the disease. I ended up spending a week in the hospital, the first four days sustained entirely on the IV, I was not able to ingest anything. I was then put on a liquids diet for two days, then finally food for another two before I was discharged from the hospital. Biopsy of my colon came back as Crohn's.

Recovering now, currently on prednisone, ciprofloxacin, metronidazole, and mesalamine. I'll be starting Humira in the next few weeks. I ended up losing a total of 40 pounds. I guess this is the beginning of my Crohn's journey. Still trying to wrap my head around it.

 

[PsychoJane]

Hi Dave!
Welcome to the forum! The beginning is probably the hardest part of the crohn's journey. Thankfully you will now have a medical team able to work with you in finding a way to maintain your disease under control. Some people respond very well to the available treatment and get their quality of life back in a short time. I hope this will be your case
The next few weeks might be quite something with all the adjustments and "learning" you will encounter but feel free to come here and ask questions and clear your mind! You shall find people with knowledge and experiences that will help you get through this!

 

[MissKit]

Don't forget to watch your diet too Dave! One of the best foods for even the worst days is Avocado. Oj, fish oil and aspirin are good for inflammation(cramps) as well, though the Oj will change your PH level if you drink too much and without food.

Good luck and God Bless!

 

[Clash]

Most GIs will tell you to avoid aspirin and other NSAIDs as they can be harsh on your GI tract.

There is currently no cure for Crohn's disease, and there is no one treatment that works for everyone.

The goal of medical treatment is to reduce the inflammation that triggers your signs and symptoms

Pain relievers. For mild pain, your doctor may recommend acetaminophen (Tylenol, others). Avoid aspirin, ibuprofen (Advil, Motrin, others) and naproxen (Aleve). These are likely to make your symptoms worse

Source


There have also been studies linking aspirin use to CD:

Conclusions A strong positive association between regular aspirin use and CD, but not UC, was observed. The data suggest that regular aspirin use should be measured in epidemiological work on CD. If such findings are consistent in other work then aspirin may affect the development of CD in a middle-aged to elderly population.

source

So, most with IBD are told to avoid meds such as aspirin, ibuprofen, naproxen and other NSAIDs.

 

[MissKit]

I had no idea, thank you Clash I won't be taking low dose chewable aspirins every day anymore.

 

[Clash]

If you take them as px'ed by a doc for heart health then you would want to discuss it with him. It is probably a good idea to discuss any change in medicine or dietary changes or symptom changes with your GI.

 

[hillcountrygirl]

I'm new to the forum,but I can speak to this. No aspirin or NSAIDs. I have fistulizing Crohn's of the small bowel and a newly diagnosed fistula. And was in the ER because of heart palpatations. Was told by ER doc - no more baby aspirin. Primary care told me to start it. It's rough on us Crohnies!

 

[davej]

Thanks for all the advice guys. The healing process so far is slow going. I've got my appetite back and have been eating as much as possible trying to put weight back on, doing the best I can to avoid foods that might do harm.

Mornings are the worst for me, I seem to have to go 2-3 times when I first get up. Once I get food in my system and get moving around everything seems to get better. I can go most of the day without pain, only having to go about 2-3 times throughout the rest of the day. I guess I'm just hoping to get back to normal; one or two solid bowel movements a day.

I've gone through the metrodinazole, and the ciprofloxacin. I'm down to mesamaline, and starting to tapper down prednisone from 60mg to 40mg. I'm hoping the humira will help when I start taking it next week.

 

[nogutsnoglory]

Sorry you are struggling and lost so much weight. I lost 50 lbs a few months ago. I'm still struggling to put weight back on but organic dairy and wheat really helps. Obviously non-organic dies the trick but I want to put the healthiest options into my body.

 

[davej]

Quick Update on my progress; this flare doesn't seem to want to end. I had been getting gradually better, but two days ago I had really rough day, bad abdominal pain and having to go about 10 times. It made for a very discouraging night, I was out with friends and had to ask my roommate to drive me back home. I'm not sure if it was something I ate, I had lunch at a restaurant but didn't order anything different from what I had been eating. I guess I'll have to be more careful about eating out.

I had a Gastro appointment today, but I had to reschedule due to work. Unfortunately I can't get in now for another 2 weeks. I was supposed to start Humira today which I was excited about. I'm really hoping Humira will do the trick and help end this flare...hoping the next 2 weeks goes fast.

I've managed to put a little bit of weight back on. I got back in the gym last week and it was rough, but I'm glad to be getting back in shape. It feels good to be sore again. Before I got sick I was about 205lbs, when I got out of the hospital I had dropped to about 165-170. Right now depending on the time of day I'm back to around 175-180.

 

[mccindy]

Weight management is one of the trickiest things with Crohn's, it seems. In a flare, limited by food, I have a hard time maintaining my weight. Last week we were in Canada at a remote resort and I didn't bring as much food as I thought I did, so I ended up losing four pounds. Now that we're back home I'm trying to maintain again but it's tough when there are limitations to what we can eat! I do like to eat white rice, and I figure that's a good way to keep weight on, and peanut butter and also kefir milk. I had the rice and peanut butter with me last week and ate a lot of both, but apparently it wasn't enough. This week I'm back on my kefir milk and was able to pick up some gluten-free foods to help with adding calories without irritating my belly.

I've found that eating out is also tough. Unless the restaurant has a specific allergen menu it can be quite difficult to determine if even normally "safe" foods have been prepared in a way that makes them unsafe. I had an omelet Sunday and I think either the eggs had milk added or the chicken sausage had gluten in it, because I was in pain alll afternoon and evening. The waiter at the restaurant couldn't find the apparently ONLY copy of the allergen menu. Not chancing that again!

 

[MissKit]

That sounds bad Dave, does your doctor know your having such a difficult time? Maybe they can bring you in for an emergency appointment?

Sorry to hear about your food shortage Cindy, stay vigilant with your menus!

Hoping things become easier for you both