Logo for MeetAnOstoMate
Support | Friendship | Relationships
26,431 members

Autoimmune disease

Sat Mar 04, 2017 10:36 pm
"This is the best website for people with an Ostomy, hands down. So much understanding. Everyone should join."

I had a diagnosis of ulcerative colitis in 1996 and had my colon removed and got a j pouch for 10 years. I had to remove the j pouch after 10 years because it was failing. I have a permanent ostomy now.

I recently had a proctectomy and after that surgery broke out with blisters and now have a Rhumetologist who is telling me I have an autoimmune disorder. I broke out again and after my remicade infusion and became completely paralyzed. This experience has got to be connected to the Ulcerative Colitis. Anyone have anything to share?

Betty

Sun Mar 05, 2017 1:58 am

Betty, I am sorry you have experienced so much trauma. I know you must be having all kinds of emotions about all of this. I can give you some information and psychological support. I can and will pray for you but in the end, it still comes back to you to choose to be strong. Everyone on this site can and will give you love and support. 

Ulcerative Colitis is an autoimmune disorder itself. I found that out when I had lung cancer in 1996. An autoimmune disorder is one in which the body's automatic immune system shuts down, making you susceptible to almost every biological infection or illness that comes within 10 feet of you, or in worst cases confuses the body's own cells with invader cells and attacks part or all of your own body, as in cancer. The ulcerative colitis is your immune system attacking spots in your own colon. The attacks vary in severity, but frequently become more severe until eventually surgery is required to save the person's life. In my case, only 18 inches of my colon had to be removed, requiring a colostomy. In worst cases, the entire colon (large intestine) must be removed, requiring an ileostomy. This does not prevent future autoimmune disorders!! In your case, apparently your immune system attacked your nervous system with disastrous results. The truth is, no one can accurately predict how your body will react to this attack in the future. I have an older brother who also developed Ulcerative Colitis, but after a severe diet change and soothing medication, his disorder went away. Mine didn't, even though I tried the same diet and medication. Whatever happens, please keep us informed. If you just need to vent or perhaps cry a bit, this is the place. We want to help. You can reply to this message whether you are a paid member or a free member. If you are a free member, I would be glad to start a forum topic for you so the whole site can join in and you can reply to it with anything you want to say. My name is Don and I will be watching for your answer.

MeetAnOstoMate - 26,431 members
Sun Mar 05, 2017 10:06 am

Hello Betty, I don't have much to add. Don explained it all very well.. I have Rhumatoid arthritis also on remicade infusion..but I have a colostomy and I have chronic constipation.  There are other meds thats are used for autoimmune disorder I just don't know what can be used with UC.  Have you spoken with your rhumetologist and discussed options?? We are here for you..Please keep us posted.  

Mon Mar 06, 2017 1:26 am

Hello Betty.

I too do not have anything to add to Don's excellent post other than to agree with him and say that we all would like to be here for you if you need support. My brother in law has an autoimmune disorder brought on by chemo-therapy, which apparently one of the side-effects of that treatment and like Don says, it akes you prone to almost every infection  around.

Please keep in touch and let us know how things go for you.

Best wishes

Bill

Sun Mar 12, 2017 7:11 pm

Hi Don,

Thank you for the response.  I have struggled with acceptance of the Lupus diagnosis simply because I never felt like I would ever have to deal with anything to do with anything relating to my ulcerative colitis ever again once I removed the colon which is where it had been discovered.  I felt like once it was removed it was gone and I just didn't get it.  Seems so easy to understand now that I have read about it and you have explained it to me with such a heart felt reply to my email.....you are a very kind soul.  Thank you for being so caring towards me.  I now am working with my doctor and really listening to him try and figure out what meds will work best for me and pray.

I had a proctectomy June 2016 and after the surgery I had a really rough healing period, and that is when I had my first breakout with the blisters.  The surgeon had no idea what it was and treated like a burn.  It healed, so I blew it off.  The last two attacks were hospital fatal and I was so ill.  I have been really sick from those two hospital stays.  I have really never healed from the proctectomy and the surgeon can't fix it so I am in constant pain.  I am on Dilaudid and the Fentanyl patch and Xanax.  I am still in constant pain.  I have been cauterized 10 times, and recently I had an aspiration performed, but I am still a 10 on the pain scale.  I am going to send an email out now to see if anyone had a proctectomy with complications and see if I can get some ideas.

Thanks again Don.

Betty

Sun Mar 12, 2017 7:19 pm

Hi Winnie,

I love your name.  Thanks for the response.  Yes Don explained it to me so well.  I have lupus and I just have to accept it.  I am working on that with my Doctor.  I recently had a proctoctomy and that is when the lupus appeared.  So, I got remicade and ended up in the hospital both times so I have to not use remicade, and the doctor has to pick something else out.  Next infusion will have to be done at the hospital because of my sensitivity and have some IV's and steroids nearby ready to give me just in case.

I am sending out an email now to see if anyone can help me with the problems I am having with my proctectomy post op healing.  I am still trying to heal and my surgery was June 2016! Hope I get some good responses.  I sure love this website.

Betty

Sun Mar 12, 2017 7:25 pm

Bill,

Thanks for the response.  I am sorry your brother is going through this too.  I love this website because of kind people like you.  I am working with my doctor on medication for the Lupus.  It is attacking my nervous system.  I had a proctectomy in June 2016 and that was the first time it appeared.  I have since had one major breakout, which I was hospitalized to figure out what it was.  I was given two rounds of remicade and was hospitalized after each infusion, even though the blisters went away, I can't have remicade.  My doctor is working on a new infusion to use for the next time.  I am hoping it will go well.

Thanks again.

Betty


Thu Mar 16, 2017 9:41 am

I have severe Crohn's disease, and was on remicade for 15 yrs, then started having allergic reactions.  I am not paralyzed.  Bless your heart, Betty.  What a side effect !!  I am on a different infusion called Entyvio, which is a different drug.  I am not allergic to it.  It is designed for people who have allergic reactions to other drugs.  Talk to your Dr. about that one.  Tell us what happens.  We're here for you.

Sat Mar 18, 2017 9:08 am

Geekyjen,

Thanks for the reply.  I will be seeing my doctor on Friday and mention Entyvio.  I did not remain paralyzed for more than 2 days, but it was terrible and I was so scared.  The doctors just used alot of xanax and other drugs like that to UN paralyze my joints that were being attacked by the remicade.  Turns out I have been diagnosed with LUPUS. It is attacking my nervous system.  I had ulcerative colitis in 1996 and they had to remove my colon.  Had a J pouch for 10 years, until it started failing.  I then got a permanent iliosomy, and I suffer from severe chronic diareha, and I dehydrate frequently.  I recently had a proctectomy, and that is when the new autoimmune disorder, Lupus, appeared.  I have had two hospital stays now because of the blisters and the paralyzing incident.  I will be dealing with this forever now.  I have just been working on acceptance.

I love this website because of wonderful people like you!

Betty


Sat Mar 18, 2017 9:18 am

you mean a rectectomy?  sewing up the anus?

if you've had a total colon removal, that means your diet needs to be different.  stool is formed in the colon, so they say it will never be more solid than pudding.  Not true!   I eat cheese and nuts.  I eat a quesadilla before going to bed.  If we can keep the diarrhea down, dealing with the ostomy is so much easier.   Good luck Dear, and keep in touch!

Jen

Sat Mar 18, 2017 11:41 am

Betty, I am so glad they neutralized the paralysis!  Designed knows what she is talking about on the ileostomy diet. I have a colostomy so my diet does not need to be as strict as yours. I still need to be careful, though. I ate a very spicy large shrimp fajita taco the other day and paid for it yesterday. I had to empty the bag 8 times between 10:30 pm last night and 5:30 am this morning! But it was a very good taco. Thank you for posting and keep in touch. Don.

* Please, do not post contact information, personal information or advertising.
All times are GMT - 5 Hours