Will my body start to heal with surgery?

I am new to this forum but not new to UC. I was diagnosed in 2002 and going on 14 years of this hell. I have been in a flare since August 2014 and will not respond to anything and by anything I mean...prednisone, Remicade, Humira, and even Entyvio among all the other suppositories, enemas, pills, etc. I went for my surgery consult last week but got conflicting opinions between two doctors in the practice.

Here are my current symptoms: EVERY.SINGLE.DAY I feel like I have the flu not just after Entyvio infusions. My body aches, my joints ache, I run a low grade fever, my hemoglobin was exactly the same after 4 weeks of iron by mouth, and of course the classic UC symptoms of bleeding, running to the bathroom 10-15 times a day, not being able to make, and general misery. (I am starting IV iron today...not happy).

It seems like every day I get something new. Currently, my left foot is killing me on the inside for NO REASON, my right hip has started hurting.

I am a 36 year old, pretty active person. I am trying to make the decision about surgery because I want my life back and I am tired of feeling miserable. I literally take Tylenol every 4 hours just to get through the day so I can keep my job. I am SUPER irritable...with everybody.

So, my question for those of you who have had surgery: will my body start to heal after this toxic colon is out?

One doc says yes, get the nasty colon out, get all the drugs out, and let the inflammation decrease and I will feel like I new person. The second doc says she wants me to see the UC guru here in Houston to see if anything else medically can be done before throwing my colon in a bucket. She also believes these are "extra intestinal" symptoms and may not improve with surgery!!

I do not have pancolitis, my colitis is in the descending colon right now so I am wondering if that is the hesitation. Regardless, I feel terrible! I lose a lot of blood and honestly, I feel like I am losing the fight.

For those of you who have had surgery, PLEASE tell me if I will continue to still feel this bad after taking the colon. What happened with you??

Well, most people who reply will tell you they practically sprang up from the operating table after they came round, they felt so much better with their colon out of them. I was hoping it would be similar for me, but it wasn't. It was a long, boring recovery, complicated by a couple of difficult drug withdrawals and an underlying thyroid condition. I was fatigued for a good year after surgery. After that, things slowly became as good as they were ever going to - not as good as being 25 and never having Crohn's, but it was never going to be: I was older and missing a large organ.

That said, if you've exhausted all the medical options, I'm in favour of surgery. The meds alone can batter you, never mind the disease itself. It might be worth seeing the UC guru (I probably would, just out of curiosity), but I'd also be scheduling an appointment with a colorectal surgeon. Seeing a surgeon doesn't commit you to surgery, by the way: I saw mine a few times before I finally was ready to sign the dotted line.

Yes - Even when I was just a couple of weeks out from step 1 (of 2) jpouch surgery, I could tell that I felt significantly better. My colon was bleeding nonstop and incredibly inflamed, so of course having it out of my body made a huge difference to my overall health. Of course people don't spring up from the operating table -- it takes some time, and for me it was around the two week mark where I really started to regain my strength and could notice the difference. My body is now less inflamed and I am no longer on any meds. I can eat most anything with my temp ileostomy (still staying away from things like mushrooms and large kale salads), but it's all free of pain and discomfort, and there's no running to the bathroom shortly thereafter. Good luck with your decision!

It is not clear to me that all of the extra-intestinal symptoms will clear up, but maybe they will - which is better than now.

Also, IMO, the oral iron could have been a large part of the flu-like feeling. Oral iron is the devil. I hope you feel better on IV iron. It was great for me.

It would not hurt to have the Houston consult.

I had a surgeon present my case before a board of surgeons because I had so many problems to include: right hip pain, burning pain both heels, hair loss, blurred vision due to inflammation of optic nerve, and severe arthritis both knees. The board determined Ulcerative Colitis was not the problem. I went to the Mayo Clinic in Rochester, MN for a second opinion and was told UC is systemic and surgery would resolve most if not all my health issues and fortunately for me they were right. I now have my active life back with no limitations. I have absolutely not regrets. I get pouchitis and it sucks, but nothing has been as bad as UC. I never have to worry about soiling myself with pouchitis because I still have control of my bowels.

qsam6 said...
I had a surgeon present my case before a board of surgeons because I had so many problems to include: right hip pain, burning pain both heels, hair loss, blurred vision due to inflammation of optic nerve, and severe arthritis both knees.

All of this could be, and probably was, caused by long-term prednisone. The doctor who was happy to keep you on 40-60mg every day for 6 years should be struck off the medical register for malpractice. I'm not even one to talk up the benefits of surgery, but that's an insane treatment plan when a surgical "cure" is widely available.

I am thankful I had surgery. I am a worrier. Even if I got into a great year long remission, I would have been worried daily about the UC recurring. I had a couple good remissions but they didn't last long enough. I didn't respond to any biologics...

It's nice to be nearly free of this awful illness. I look forward to a future of traveling, hiking, working freelance if I want. I felt so trapped, needing insurance and 15k infusions and 2k in Rx from the pharmacy every month. All I saw was a bleak future of bills, flare ups and pumping drugs into my body. I kept imagining myself between jobs, unable to follow dreams, stuck in the same place, same job FOREVER, on and off pred, CHUBBY, moonfaced, all because of this illness. No thanks!

Long overdue update....

I had a total colectomy on November 13, 2015. Although the surgery wasn't easy, it has BY FAR been the BEST decision I have EVER made regarding this wretched disease...so far. There are many, many negatives posted on blog sites, mostly because people need a place to vent and release and find support, however, there can be positives as well and I hope I can be a positive.

I looked to many forums before I had surgery to seek the support of those that had been before me. I think this is helpful because then you sort of know what to expect....the things the doctor doesn't necessarily tell you because he or she hasn't lived through it. There is no better resource than fellow UC sufferers.

Here is my story so far:

You can read my previous posts for my state before surgery but long story short, I was in bad condition. I went into surgery with a hemoglobin hanging around 9.0-ish (only because I was having weekly IV infusions to keep it there). They put me on the schedule pretty quick, as in, they called me on Wednesday to have surgery on Friday because my condition seemed to be deteriorating rapidly.

Keep in mind, I hesitated having this surgery for several reasons: 1) the bag was a devastating thought to me 2) the chance of j-pouch failure 3) I have never needed a transfusion, so how bad could I be 4) my whole colon was not effected, so I couldn't be as sick as others. Well, needless to say, surgery happened. My friend put me to sleep and kept an eye on things for me, she said it was nasty and needed to come out. I avoided a blood transfusion but they were ready to give it with an extra IV and all in all, everything was okay! The surgery took about 4 1/2 hours. I don't remember anything until I woke up in my room later in the day. I was not in any pain. The only incision site I have is where they pulled the ileostomy through, my surgeon was AMAZING!

My one and only question I had to every person who came in my room was, "did it need to come out?" My biggest fear was doing all of this for nothing, even though I knew in my gut that is wasn't.

Here is the kicker...
When I asked my surgeon that same question he said, it had to come out, you were only about a week or maybe two away from perforation. W-O-W!! Folks, for those of you who do not know the ramifications of a perforation, it is terrible. Either I would not have survived that OR I would have spent a very long time in ICU with a significant amount of support. Someone was watching out for me.

After surgery, I stayed in the hospital 3 days and went home. I was able to eat soft foods, but I think I went a little too fast. I did end up about a week later in the hospital with a bowel obstruction. It started with vomiting, but it was weird, it wasn't like normal vomiting with cold sweats and stomach hurting, it was just simply, it had to come back up. Vomiting is a big red flag post surgery...I ended up in the ER with two IVs and 5 liters of fluid to re-hydrate me. DEHYDRATION with this surgery is NO JOKE my friends. I had a nasogastric tube that stayed in for 4 days and spent about a week in the hospital all in all, but no surgery at that time.

Even with the bowel obstruction, I would do it all over again. I cannot tell you how my life has changed. I have not taken a single medication (except Singulair for allergies) since the day I had surgery. It is all gone. No prednisone, no Imuran, no Remicade, no Humira, no Entyvio, no suppositories, no enemas, no NOTHING!! It feels amazing!

I was very weak after surgery and it took a good 4 weeks before I felt like I was starting to get back to normal. It is okay, take it slow, nobody is asking for a hero. I laid in bed a lot the first 3-4 weeks, that is okay too. I got tired for the first couple of months post-surgery, who cares?!?! I slowly started recovering, my body made 3 pints of blood on its own.

I wasn't very good at the ileostomy bags at first, but I got better thanks to YouTube. LOL! I have many funny ileostomy bag disasters to tell...and that is exactly what they are...funny!

The bag has been a NON-ISSUE...so, if anyone of you is considering not doing surgery because of the bag, I was there, don't do that to yourself. I actually do not mind the bag at all, my kids decorate them with permanent marker and they are adorable. I cannot put into words how nice it has been to not have to stop at every bathroom, to not even care if there is a bathroom around or not, and to not worry about soiling myself and my clothes (unless you have the occasional bag malfunction, but like I said, you'll get better).

I have rid myself of all the medications I was pumping into my body for 14 years, my hair is getting thicker, my skin is clearer. I feel like a person again. I dropped a lot of weight, including all my prednisone puffiness, YAY! I knew that would happen because the surgeon warned me ahead of time. Here is how weight loss went: I was lingering around 145-150 lbs before I was getting really sick, when I started to get really sick I was about 129 lbs with sallow, grey skin and thinning hair. After surgery I dropped another 10 lbs +/- and now fluctuate between 118-121 lbs. It is really weird, I go to bed at 121 lbs and wake up at 118 lbs because of how much fluid this temporary ileostomy dumps over night.

That is the one thing you must watch and be vigilant with is fluids. You have to drink all day with a temporary diverting ileostomy (the ileostomy you have while your j-pouch is healing). It will excrete fluid whether you are eating or drinking or not, so you will become dehydrated quickly. G2 gatorade and water are my new best friends!

Here I am, I will be going to surgery this Wednesday, March 30th (4 1/2 months later) to have my ileostomy reversal surgery and start putting that j-pouch to use. I am not expecting it to be roses and butterflies, I know I have another hurdle coming. However, I am no longer afraid of the j-pouch failing because I would be perfectly fine with a permanent ileostomy, which is something I never would have thought I would have heard myself say, EVER.

So, thanks to info I have gotten from others on this forum, bring on the butt burn....I'm READY!

If I can help at least one person going through this, I will be a happy happy camper because the worst part was not having someone to talk me through it who understood. So, please, if you have any questions please do not hesitate to contact me.


Amy

Awesome! So glad you're feeling better and moving forward to even better times. It's really nice to see the progression you've made and hope you come back to give us more updates.

Congrats on your recovery so far and best of luck with the next one. This one should be a bit easier on you as you are going into it healthier. Wed. was the 1 year anniversary of my daughter's 3rd surgery. I wish I could post a before and after photo- the health and happiness in her face is worth a million bucks. Of course surgery is not to be taken lightly, but it was a lifesaver on many levels. Best to you.

So happy for you that you're in good health!

Wishing you another successful surgery tomorrow :)