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My Surgery Story

Check out my Story post. I'll give a short intro here:

I was diagnosed in Feb 2014 after years of "I don't think people normally feel like this, or use the bathroom this much or this urgently". My GP doctor failed to take my complaints seriously, and therefore so did I. Until things just got so bad that I decided to skip him and go straight to a specialist.

I had an endoscopy to diagnose the disease, and the GI saw inflammation, ulceration, and scar tissue. The first CT scan was in April of 2014 and showed about 8 inches of inflammation. The second CT scan was Dec 2014, and showed that nothing was getting better, after a failed experience with several meds, and a mildly successful run with Humira (got me feeling about 80% better).

Suddenly, the worst flare of my life hit. Fevers, chills, cramps, and a general "I feel like sh*t" lasted from December 2014 until April 2015. My relationship with my girlfriend was strained to the breaking point, and I thought my whole life was tumbling out of control. It was literally the worst thing that has ever happened to me in my life.

That's when the doctor finally said the word surgery. I was prepared for it after reading about it all, so I won't go into that. But this is where the story starts.

April 16th, I entered the hospital. I had lost 50 lbs. since the diagnosis. I was very fit, as I spent several years bodybuilding before the symptoms got terrible. Had I not spent years adding lean mass to my body, I would probably have needed a feeding tube or IV or something, but luckily I was in stellar health before all this, aside from anxiety issues (possibly related to the Crohn's apparently).

They put me under, and I woke up in a grog, and my dad and now ex-girlfriend were there. They told me the final prognosis:

2 feet of terminal ileum removed.
Ileocecal valve removed.
Appendix removed.
Part of cecum removed.

Apparently everything they removed had swelled and inflammed so bad that it was physically sticking together. They had to repair part of my colon that had fused to the mass. The appendix wasn't even visible as it had been engulfed.

They started with the robot for a laparoscopic surgery, but ended up cutting me down the middle in order to get the mass out. I now host 4 puncture wounds in a half moon on the left side of my body, and a gnarly 7 inch stitch from my sternum to my waistline.

The first few days in the hospital were pretty rough. I had terrible gas pains, which walking helped alleviate. It was tough to move around at first, but eventually I was walking the whole floor. The worst thing for me (embarrassing because my then-girlfriend had to witness) was when my bowels decided to start back up in the middle of the night. I tried my hardest to pull myself out of the bed, but being strapped to an IV and the effort of moving was so hard that I ended up "pooping my pants", for a lack of better description.

I discharged after 4 days, and spent the next two weeks at home unable to sleep in my bed or really do much of anything. I got sick of video games and movies quick, and reading didn't help much either. My girlfriend and I broke up the first night I got home (after a few weeks of fighting, I don't want to go into it here), so I thought about her and our relationship a lot. It was very tough to deal with heartache while trying to recover. I wouldn't wish for anyone to have to experience that.

After the first two weeks, I definitely started feeling better. Every day got easier, and I was walking around the block every other day. I didn't take the pain medication for very long, perhaps 4-5 days after arriving home, as I was afraid of becoming dependent. I think I was afraid of that just because the meds dulled the heartbreak as much as the physical pain.

After 4 weeks, I went back to work, and feel fantastic. Night and day difference for sure. All the Crohn's pain is gone, and my diet is improving rapidly. I actually am eating fruits and veggies again!

The only problem I face now is the new bowel mechanics. With a valve missing, I definitely get the "bile sh*ts". I found that immodium works well for controlling it, as well as more fiber in the diet. It's not perfect, but I'll take it over a flare any day.

So that's where I am today. Surgery so far has been an absolute life saver. I hope to get back to living a 'normal' life, even if I have to start packing extra clothes for those "I couldn't make it to a toilet fast enough" moments. After two near accidents already, I am keeping an extra pair of clothes in my car and in my desk at work. I also keep a backpack with immodium and pepto tablets, wet wipes, and other things.
I'm glad that you are feeling so much better after surgery! It does sound like surgery was the best choice for that section of bowel - especially with it all stuck together I don't think you were going to be able to avoid surgery.

I'm always interested to know this - did your surgeon measure your small bowel length during surgery? I'm conducting a very informal study ;)

My doctors tell me that your bowel can adapt to its new configuration in the two years post-op - learning to compensate for the lack of length and also adapt to have other parts of the bowel perform the function of the sections removed. Obviously it's better not to have any bowel removed but when it's been necessary, as it has for you, then I think it's nice to know that these symptoms you are experiencing - urgency etc - may resolve.

Are you having b12 injections because it certainly sounds like you would need those? B12 absorption happens in the terminal ileum.

And if the diarrhea continues and is due to bile salt malabsorption then you do have some other options for meds, although as you've found immodium and fibre can help too.

Do keep us updated with your progress. It's always nice to hear success stories!

Are you back on Humira and 6mp for maintenance?
It's good to see you have a positive attitude. If Imodium isn't helping quite enough, you might want to ask your doctor about Lomotil (co-phenotrope). It does much the same thing as Imodium, but I found it a bit stronger. Incontinence pads may be another thing you want get a supply of if you're not using them already. And as 24601 said, your symptoms may improve further as your digestive system adapts. I hope your heartache will heal as well.
I am still on the meds, but I meet with the doctor next week to find out which ones to drop/continue. Hoping to get rid of the Humira. It certainly helped but those injections aren't fun. Plus, it didn't seem to help much after the first few months. I have a very high-functioning immune system.

Thanks for your support! I'll definitely talk to the doctor about medicines for motility. It actually has improved a lot with getting my diet back to normal. I still find some things hurt the gut. It's mostly the obvious things such as super fatty foods, spicy foods, and milk. But I've learned the old saying is true: Never trust a fart.
Just an update, it has been about 8 months later, and I had to stop the 6MP due to an extremely low white cell count. However, my body did recoup fast from that just by stopping the 6MP (I think it took about 4-6 weeks). I am still on the Humira, although the joint pain and a newly formed psoriasis are still present. I discovered my cousin, who had Crohn's as a kid but had a small bowel surgery similar to mine, has actually been symptom free for about 15 years now, and he said he stopped all medications after a couple years. I really hope I get that lucky!

On another note, I think I have my bowels pretty well figured out. I started taking colestipol to help with the bile acids and it has been a life-saver. I coupled that with two Imodium daily and thankfully, I think I'm getting to a point where the increased fiber intake plus the colestipol seems to be keeping my bowels in check without imodium (1-3 times a day is much better than the 6-10 it was for a few months after the surgery.) I had a day where I didn't go at all and I was scared something was wrong lol. Also, I have read in other posts that a lot of people don't like the colestid/colestipol/questran, but I have to highly recommend trying it. I take it about an hour before lunch and again just before bed. I also don't always take two, sometimes just the one at night is enough. It's very diet dependent. I also have noted that it takes 24 hours for imodium to kick in for me, so I hope to reserve that just for special occasions (date night, wedding, big 'all day' meetings at work, etc.). I take both colestipol and imodium on an empty stomach and that usually significantly reduces the gas and bloating. BUT, as of very recently, I seem to be doing OK without using the imodium at all. My bowels might be adapting!

Also, I read somewhere about taking antacids for bile salts and I must agree, it really does work. There seem to be two consequences of bile acids: either it hits immediately and you have to run to a bathroom after a meal, or you get it much later the next day. If I have had a particularly low-fiber day, case 1 applies, in which case the antacids really help tremendously. I take one before the meal and one after, and I can usually go a few hours before the urgency hits. This has been really useful advice. Plus, as long as you don't over-do it, the extra calcium doesn't hurt either.

I now avoid almost all lactose (really, I only do hard aged cheeses now, with a bite or two of a cheat-snack a few times a month) as it seems to give me really bad gas/bloating. Even tried the lactase pills but they didn't do anything for me at all. I also found that animal fats seem to be much worse than say, avocados, or olive oil. I have been trying to stick to lean meats (turkey, chicken, venison and lamb) or the leanest portions of beef and pork. The animal fats seem to promote much more bile than anything else, to a point where even the colestipol won't help.

As for the diet, I have been experimenting with new carbs/starches to make sure I get enough calories. I eat a lot of rice and quinoa now, along with things like malanga, which is like a "meaty" flavored potato. Just make sure you boil it first. I can eat most fruits and veggies now aside from anything I know gives me bad gas, like beans, broccoli, etc. I also avoid alcohol and caffeine is a complete nope. I can have one drink, but even one isn't really worth it to me; no buzz and a gamble on how I will tolerate it.

So, that's the update. Things have been definitely improving and I feel like I have my life back. I think the real testament will be if I am able to get off all meds altogether.
Happy for you life is getting back to normal - sort of.

Your story is similar to my Crohn's adventure, my first bowel resection was in the same area. I also found that over time, the small bowel took on some of the jobs of digesting and absorbing the food and liquid.

Relationships are a really difficult test during the periods of crisis, I suppose like any other kind of illness. I lost friends, but gained respect for the ones who stuck it out with me. As for romance, don't give up. Sometimes the best is yet to come, true love.