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I am currently on Remicade (10mg/per kg weight) every 6 weeks. I am suffering Lupus-like symptoms of severe joint pain and swelling, numbness and tingling in all extremities. I believe this is due to the Remicade and after almost 2 years of taking it, I'm stopping. The Lupus-like symptoms happened last year and lasted for about 5-6 months and are back again. The first time my GI did blood work and said the results showed no signs of inflammation in my body, so it wasn't caused from the Remicade. Had blood work this time around and the same results, no sign of inflammation.
 
I was hospitalized in June of this year with a severe flare and at that time my GI and another doctor in his practice both told me Remicade is my last treatment option. If it fails, I will be facing surgery. That being said, I am deciding to stop Remicade so I can have a clear answer as to whether it's the cause of the Lupus-like symptoms.

I'm completely at peace with having surgery. It would mean no more hospital stays because of a flare, no more steroids and no symptoms. All the while I understand the possible complications from surgery. I am opting for a jpouch because I think at the moment, that is most functional for me.

My question to you is this, what is your advice on getting myself ready for surgery? I'm not sure when surgery will happen, but I'm meeting with my GI next week about referring me to a surgeon. My next Remicade was scheduled for next week. I'm not sure how long it takes for the medication to actually leave my body (my last treatment was 5 weeks ago on 11/7).

I would like to know a 'check list' of sorts for things that are helpful before surgery, in the hospital and post surgery. Are there any specific clothing items that are better to wear than others due to incisions and the temp bag. Any suggestions and ideas you have would be greatly appreciated.

Sorry this ended up being so long. :)

 Reply posted for kealie.

i had my surgery 5 years ago.  i sadly spent 21 days in the hospital because it went terribly wrong.  assuming you, and every other person i speak with, has it go well and you get out in 3-5 days, then hooray!  beforehand, i simply met with at least 3 surgeons in the denver area to see who i felt most comfortable with and which hospitals i liked the most.  if he is  cutting me open and pulling out my colon, i better like him.  i found one, we checked his surgery schedule and my college schedule and agreed upon the two dates of both surgeries.  i live in colorado and need to hike, bike, climb, drink beer, try to meet women, fail at meeting women, etc etc so the ileostomy bag was not a long term solution for me.  it's been pretty great since.  i think they lie about how many you should, but the best part of the surgery was that i could actually hold in a bowel movement for as long as i wanted.  then you notice what you eat can make it go a lot faster, louder, etc.  i don't really care anymore as all of my shame has been lost through the whole ordeal.  i'd say, just flip your colon the bird, say see ya later *** , and get that awful thing removed.  surgery sucks so just go with the flow.

 Reply posted for kealie.

I had surgery on 1/23 and got to go home on 1/25. My dr and the hospital staff were all surprised how well I was doing so soon after surgery. I am currently home and feeling awesome. I'm taking it easy and having my two kids help as much as they can, they are just 3 & 6. So far so good on part 1 of surgery. Now it's wait to heal from this surgery and off the steroids then on to my second surgery. 

Does anyone have any input on how the second surgery will go? This will be the one to create my j-pouch. I'm hoping it will be as easy to recover from as this one. 

 Reply posted for kealie.

When I had my first surgery( I've had 7 total) the most important thing I found was stay ahead of pain medicine whether you are currently in pain or not. Also, the dr is going to want you up and walking or trying anyway,, fairly soon after surgery. It will hurt, a lot. When you get out of bed, roll on your side first then up, don't sit straight up. I made this mistake. Take baby steps. The first time I had to get up I walked to my hospital door and that was it. I was done! Praise yourself for the small things! I put pictures on my IV pole of my house, family and friends, and things that were most important and I worked for them. I advocated for myself and made it clear to everything II was feeling. 

 Reply posted for laura4164.

Thank you all for your replies. I am scheduled for a total colectomy on January 23. I'm currently on 80mg/day of Prednisone due to a flair since the Remicade is gone from y body. So my doctor will be doing my surgery in 3 stages over nearly a year. He will remove the colon and put in the ileostomy next week. 4-6 months later, once I'm completely off Prednisone, we will go back for a second surgery to create the j-pouch. About 2-3 months after the second surgery, I will go back to have the ileostomy removed and hooked back up to the j-pouch.

I will be sleeping in an electric recliner for a little while to help heal, not to mention climbing in and out of my bed will be impossible post-op.

Life will take some getting used to with the bag, but I hope it doesn't take too long.

I'm so ready to be rid of UC, I can't wait until surgery day. I'm sick of being sick from this flair and just ready to move on to the next stage of life. :)

 Reply posted for kealie.

Have Tucks pads, Preparation H and if using the wet tissues, those too near the toilet.

I also got Desitin and it helped. I couldn’t stand the baby smell though….I also heard that Calmoseptine works very well, I planned on using it if needed but I ended up being ok without.

Surgeon told me that as I was fairly slender to begin, I would likely lose about 15-20 lbs. Since I lost so much weight/muscle my surgeon told me to take Glutamine, Whey Protein Isolate and Branched chain amino acids to help rebuild. They are working well….

Also, after, you may not be able to take tablets well. Where possible, take liquids/gels/gummies. I am taking gummy multivitamins. I got a prescription for naproxen for an unrelated issue and they are tablets and I am crushing them so I can be sure I get the meds.

Be patient….
 
Ok, that is all I can think of off the top of my head. Hope it helps.

If you have any questions, please feel free to contact me at my e-mail address. I know how big of a deal this is and if there is any way I can help I would like to.

Laura

 Reply posted for kealie.

Stock up on Gas-Ex or equivalent. You will need it for the first few weeks as gas is painful. Once the intestinal swelling goes down it goes away.

Avoid gassy foods for a while. I avoided a lot of veggies etc for the first few weeks to allow my body to calm down before making it work hard. I also still try to make things easier on my system and will often make soups with some pureed  veggies so it is already broken down. Things that are difficult to break down can be
uncomfortable coming out J this means corn, peas etc. I love mushrooms, but can’t really eat them now because they just don’t break down. They cause me some horrible cramping and kind of hurt/feel gross coming out.

Buy maxi-pads…sorry, but you will either need them, or will be more comfortable knowing it is there for a few weeks.

The fecal matter in the small intestine is more acidic than normal. You may very well experience “burning butt”. This is very painful and feels like it will go on forever. I bought wet wipes (actually contonelle wet tissues) and they actually made it worse. Not sure if I just reacted to whatever they use but when I stopped using them things got better for me.

 Reply posted for kealie.

Tips:

Gatorade only made me more sick, but water flushed out my salts. I ended up diluting the G2 green Gatorade with water. It sounds gross, but it was SO much more palatable for me that way. Find something that works for you  and make sure you ALWAYS have it with you because the dehydration hits quickly in the early days.
If you have a bag…..there are quite a few tips for that. Feel free to e-mail me and I will chat with you about it… laura_4164@yahoo.com

Chew your food really well, it will help with blockage etc.

Get a body pillow. You may not be able to lie fully on your side at first, but it will give you support and allow you to change positions more in hospital and at home.
Stock up on Tylenol and Motrin for the house.

Clothes….gosh, nothing fit me at all after surgery. I certainly didn’t want anything on my incisions. It was summer for me so I work long skirts or capris with a draw string waist. If you have a bag you will want a loose waist band that doesn’t put pressure on the bag (the waist band will cut across the bag). Baggy shirts helped cover the bag too.

Remicade takes about 8 weeks to leave the body…..if you can wait a little longer then you should….surgeons hate doing surgery on people after remicade or steroids as they  can result in odd complications.

 Reply posted for kealie.

Second surgery

Much shorter surgery (about an hour) and quicker recovery. However, the time immediately following was very painful. Clear liquids for the first day, then full liquids the second day. What was painful was that my small intestine was SO inflamed that the normal workings of the body hurt so much. Gas moving through the system was very painful. It took me about 26 hours for my intestines to start working again. Again, walking is your friend, it helps move everything through.

After the surgery I was not overly careful about food, I planned on slowly introducing foods but eventually decided to just test the system. I have been able to eat most things, but there is usually a price associated with it. For example, I don’t drink caffeine yet, but on xmas morning it was my treat. I knew it would make me go more, but I did it anyway….There are a few things I avoid completely, like raw veggies etc.  but most things I just limit a bit. For example, sugars and heavy fat foods.

Hi Kealie,

I recently had the same surgery you are considering after failing with all the meds (Remicade gave me horrible neurological side effects and also stopped working). I had the surgery in two stages on 7/30/13 and 10/8/13.

First surgery

Prep was the same as for a colonoscopy. Surgery took 6 hours and went really well. Walking helps. I started walking as soon as they let me 4 hours after surgery.

Because you can’t have anything by mouth, you get to have the morphine drip at first. Sounds good,but it doesn’t last long. The tablets last longer an get the pain under better control. I got Percocet and Oxycodone which made me throw up a lot. Hydration levels got critical and they worried that I had an ileus (blockage). I decided to stop taking the narcotics and switched to Tylenol and Motrin….which worked fine. Once my nausea was controlled I was able to keepfood down, but the experience cost me a few extra days in the hospital. Throwing up caused major issues and my potassium, magnesium and sodium were very low. I had crazy muscle spasms and palpitations form it. After 9 days I went home but three days later, one of my incisions got infected and I was back in the ER for fluids and antibiotics. Because of everything I had gone through and my constantly low sodium/mag/pot levels, I just didn’t have enough in me to get past the infection so I ended up back in for 3 days for fluids and antibiotics.

I struggled a lot in between the two surgeries. Hydration was constantly on the verge of critical. Very dizzy all the time, weak. I ended up losing 35 lbs .

Foods were very limited for me. Highfats and sugars would make my body dump into the bag making me lose fluid that I couldn’t afford. I kept things VERY plain and simply. No nuts, corn, seeds, anything high fiber . Google “ileostomy diet” and you will get an idea of what works etc.

 Reply posted for kealie.

Hey there!

I had my surgery on an emergency basis - so not a lot of time to prepare- and everything went as well as it could I think. Main point is that the best thing you can do is stress as little as possible about it and try to stay positive, healthy and stress free in the weeks leading up to the big day. In terms of more tangible advice:

- I had a total colectomy and now have an ileostomy. It was done laproscopic and the recovery time was probably a solid month before I was really moving around almost like myself again. The first two weeks are horrendous in terms of pain, but every day after the very beginning you'll be able to feel yourself get better and better
- When you're in the hospital start doing your laps and moving around as soon as you can force yourself. Moving around and not coddling your abs will help you heal faster. You'll want to punch your nurses in the face for making you do them but it really is for your own good!
- Borrow/invest/steal a reclining chair to sleep in for the first two weeks or so. I found that it was essentially impossible for me to sleep flat on my back or on my side right after surgery. The chair mirrors the slightly bent position of those fancy hospital beds and its great! 
- Hopefully you'll find (as I did) that after this initial post surgery diet of tan msuhy products is over you can pretty much eat whatever/whenever you want - and its GREAT! However, word to the wise: just because you can now eat ice cream and pizza/chinese food/other greasy thing everyday does not necessarily mean that you should....trust me that one catches up to you on the scale a lot faster than you expect haha.

Hope this helped and good luck with your new hopefully wonderful post-surgery life!!!

 Reply posted for kealie.

Hello- I just had the surgery after 6 years of flare up- I had an illectomy, where all of my colon was removed due to UC. I felt I was ready for the surgery too. My surgery was 10/25 and I had some complications but for the most part I can eat again and life quality is better. But get ready for some pain( I'm 65 and slower to heal) and most importantly, the doc told me if he took my rectum too I would never have to be seen for colon cancer, etc. I told him since he would be right there, take it. He neglected to tell me that the nerves get inflamed or even damaged around the bladder when that happens and as a result I can not urinate anymore on my own. He says it is due to swelling which will subside in the future sometime but I went to see a Ureologist who said it could be permanent. So be careful with that. But it's an adjustment to the "bag" but that part of it, I'm glad it happened after years of suffering. I'm just praying that the bladder issue is not permanent and I wonder if anyone out there had similar problems