Hi! I had my large intestine removal surgery 6 years ago and for the last five years I was doing fine but then I had several pouch flare ups and just recently I was diagnosed with another autoimmune desease, myastenia gravis? Is there anybody out there with a same or similar outcome?
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Hi Drvena,
I just wanted to say that I'm sorry to hear about your diagnosis. While, I don't have the same disorder as you, I have dealt with other autoimmune disorders. I tend to get disorders that end in "itis" (which means inflammation). In addition, to ulcerative colitis, I have dealt with optic neuritis and a few other "itis". Some people who have dealt with optic neuritis end up developing MS. Luckily, I'm in the clear for now.
Apparently, when you have one autoimmune disorder, you are more prone to getting others. Lucky us!
Hang in there with everything!
I am so sorry Drvena,
I seem to have generalized inflamation on most of my major joints...knees, hips, shoulders and wrists...something that feels like but has never been diagnosised as fibromyalgia (my mom had it along with post-polio).
I have severe food alergies (life threatening), alergies to sulphides (especially in wine), natural fibers like wool, cashmere, angora etc and furs (yes, I have a very happy husband!...at least I am not alergic to gold or diamonds!!!!)
So yes, I honestly believe that at least in my case, they took my colon but not the disease out of my body.
Sharon
Yep. Mentioned it in another post.
Yes, I developed arthritis about 5 years after JPouch surgery. Take it as the disease is still there and active. Keep a close eye on your pouch (yearly scopes), to prevent severe pouchitis.
Are your simptoms ever dorment? It seems to me as this thing broke out in a period of great stress and physical burn out. Still hoping that this thing will go back to where it came from...
I go through periods of better or worse....
I am usually on daily doses of antihystamines for life but have actually gotten off of them since Sept...Trying to reduce the amount of meds in my body at any one time...but no, the inflamation seems to be a sort of permanent companion in my life...if it calms down in my ankle it shows up in my elbow....no idea why...just is.
Sharon
Nothing considered autoimmune unless you classify migraines under that category?? I'd always had them here and there but they got worse after my j-pouch surgeries and became daily (nightly, actually) after my permanent ileo surgery eleven months ago. Thinking it was dehydration, I started drinking two glasses of water before retiring at night and then two more when the headache wakes me up around three a.m. This nightly cycle is becoming a drag. Stoma's great, though!
yup - fibromyalgia for almost 20 years. My flare ups are now further apart and less severe since my colon removal 2 years ago. Once I got off all the drugs from 19 years I started having pains in my fingers and feet (and NOT in the joints) - Dr said it was an auto-immune arthritis and I had probably had it for years but didnt know as I was all ready on all the drugs! Trying to stay drug free so I can really assess where my body is but sometimes it flares up out of nowhere and now that Ive moved to London and become a pedestrian... well lets just say I will NEVER wear any sort of heel again!
It seems that once you get an autoimmune disease others follow. I had hypothyroidism first. After my colonectomy for UC my thyroid is prone to go crazy. My GI at Mayo always tests it and usually it is not in the normal range. In February it was at least 3 times off from the norm. Per him it directly affects our j-pouches. It affects our entire body.
I have fibromyalgia big time and flares gets worse when my UC or now j-pouch is acting up. I went though the Fibromyalgia and Chronic Fatigue Clinic at Mayo's and they contend they are not autoimmune but a syndromes. I don't care what it is because it was diagnosed a year after my UC. Every time my UC flared my fibro flared with it. What ever caused it I got it after UC.
I have Raynaud's, peripheral neuropathy, migraines, dry eye, GERD etc.
My BFF has at least 6 autoimmune diseases with overlapping symptoms.
My mother who also had UC but had an ileostomy for 37 years and I both have been diagnosed with primary schlerosing cholangitis which is a liver autoimmune disorder that is seen with people who have UC. I also have asthma, allergies GERD and migraines now. I have been lucky lately with the PSC that I have not had a problem since Sept 2014. I have been a lucky one that I have had my pouch now for around 35 years and not had many issue with my pouch just the rest of my body..lol....
I recently read an article (though I can't find it now!) about a Dr now saying Ebstein Bar is the actual disease and things like Fibro, chronic Fatigue, UC, Hashimotos are the symptoms. But patients are constantly told they are negative as it doesnt test positive if it is laying dormant in the kidneys or liver. Definitely worth watching to see if they come up with any more research
It's interesting that you mention the Epstein-Barr virus. I had a sore throat with fever, and my doc gave me antibiotics for 10 days. That did nothing. Then she did blood tests and several Epstein-Barr results were positive, and I was diagnosed with mononucleosis! (I'm 64, people!) I was also diagnosed with Fibromyalgia many years ago. Long story short, I am still dealing with low-grade fever, and my doc wants to do CT scans of my abdomen. We'll see.
Maverick, I have a pesky low grade fever. At every stoma nurse or doctor appointment it is a low grade fever. Thanks for posting about Epstein-Barr.
Although it is 'cured' now, in 1999 I started to get cysts that would go balistic within days (emergency surgery 3xs) and become septic...I was chronically exhausted, almost incapable of climbing the subway stairs up to my apt, ran a permanent low grade fever etc...this lasted nearly a year with the cysts popping up every time that I stopped the antibiotics (stronger and stronger going from the standard amoxil to cipro on through to special custom developed antibiotics following the bacterial cultures: golden gram positive staph infection ) and coming out more numerous and in groups around my lymphnodes.
No one could find the cause or the cure. I got a 3 month death sentence from the 'Top specialist'...told to get my paperwork in order and say my goodbyes...that it would be horribly painful and very ugly.
(I split up with my then boyfriend, now hubby, because of it)
I ended up having emergency pouch surgery that summer (2000) where it was discovered that I had abdominal necrosis behind my pouch...Something that no one had even considered.
They cleaned up the abdomen, moved my pouch elsewhere (not my favorite surprise post op), ran 3 weeks i.v. antibiotics and sent me home more or less to heal...I did.
Sometimes the problem is not what or where you expect.
They thought that it was a strange fatal disease, liver problem (there were cysts on the liver too) or who knows what...it was (just) necrosis.
They often need to think outside of the box...
Sharon
I had my colectomy in Dec. 2006, and like Beth, got diagnosed with primary sclerosing cholangitis. This i in April 2013.
While I am tired of being diagnosed with things ending in "itis" it beats being diagnosed with something ending in "oma".
Good grief Sharon! I'm glad your life was saved. An awful time for you. You are one of the strongest people I know.
Ever see a hamster on a treadmill? No one has ever told him that he can stop so he just keeps going (until her drops)...
That's me.
S
I never had prob w/anything like this, until my colon was removed....
I feel everyone on this post is brave. I read everyone's story and everyone has there own problems that they deal with ever day including myself. All I can say is we are all here in this together and by telling each other what our problems are there is always someone or many here to help us thru whatever we are dealing with at the time. I have always said this is my life line. I can honestly say that If I didn't find these sights I don't know how I could have dealt with everything that we go thru. You all are the most amazing people that are willing to help all of us and in turn we learn thru you so we can give others the advice that you give us. You give us full information that may be going on and this gives us the info to ask our doctors if this is (what ever the problem is) going on. I thank you all for that. I want to wish every one a Happy Holliday and try to watch what you eat Stay well Grace
grace
well said, very well said. this site has helped me make the decision to have the k pouch and then worked through some of the complications. you are family in the greatest time of need as you understand and have the compassion to share. thank you all!! be well and peace, janet
Yes. J-pouch surgery in 1997 for UC. About 4 years ago I started being hospitalized every 2-3 months for dehydration. I finally went to the Mayo Clinic a year ago; got diagnosed with Crohn's. I don't think I can handle any more!
Te Marie I agree with you Sharon you are the strongest woman I know. Reading what you have been thru. I read all your posts all I can say is that you are an amazing woman.
Grace
drvena posted:Hi! I had my large intestine removal surgery 6 years ago and for the last five years I was doing fine but then I had several pouch flare ups and just recently I was diagnosed with another autoimmune desease, myastenia gravis? Is there anybody out there with a same or similar outcome?
Hi drvena.
Yes. Allopecia to start with and Hashimoto thyreoiditis.
Who knows what's coming next.
François.
Sorry to hear about your crohn's GREY58. I have been dealing with dehydration since my first j-pouch surgery over 5 years ago. I've had fluids in an Urgent Care settings and wish I could have that more often.
What good is that diagnoses? How does that help your dehydration problem?
Dermatitis herpetiformis.
That's what I have now.
Doesn't hurt but boy is it itchy.
But... You cannot scratch it. I didn't have it until my colon was removed. I think we... The dermatologist and I.... Have finally found something that works.
Richard.
You're right TE Marie. The hydration sessions are really just a patch. Right now the number one issue I have is fatigue. I'm sure it's partly the meds, but I'm so tired of struggling to make it through the workday. I resent what've become as an employee
I have asthma, arthritis and interstitial cystitis. All very fun to have.
It amazes me how we all have so many things in common - being hard to hydrate, feeling like we can't give our all as an employee, too many health issues...
The key for me is to just keep on chugging.
It seems that we've all had to deal with multiple diseases at once which are definitely not fun. I hope the following joke doesn't offend anyone. It is meant to bring a bit of levity to your day.
Jackie Mason said that the key to growing old is not to keep from getting sick, it's about getting a disease you like!
It Looks like I need to get a dermatologist as my itching is crazy Richard! I have had problems with itching for years but recently I been getting hives. I started another round of a different antibiotic last week for a UTI and my hives went away in a few days. I looked it up and one of it's uses is for hives. I never realized hives could be more than caused by a stressful situation or allergies. I have been taking antihistamines for itching and hives for decades. So long that the prescription antihistamines are now sold OTC. I have gone through a lot of coconut oil and body moisturizers. It's gotten worse since my j-pouch surgeries so I also wonder if the itching and hives are brought on by being dehydrated all the time.
Maverick Plus, I've been telling my family I know what the saying "being a dried up old lady" means because I'm am one now!
I feel bad for those of you working while fatigued. I've been there and done that. Fibromyalgia and Chronic Fatigue hit me hard around a year after my UC diagnosis and taking the devil drug prednisone. I can no longer work and am receiving disability benefits. I wish I could work again! Please don't do what I did. I was in denial when diagnosed with it all and continued to work to much. If I'd listened to my body and rested more I might feel better today.
Here's another one Maverick Plus, Grave Stones never read "I wish I'd worked more."
Hey all.... I finally got it to clear up with a prescription cream. Two days before I had to go back to work. Thank goodness! It was mainly on my forearms and hands and wearing clothes over them would make it worse. Even a small breeze of wind would make me want to scratch it!
It's a strong steroidal cream. I don't know if I have to use it continously... Hope not.... But it had immediate results.
I was put on an antibiotic specifically for it and effective for most but for me it didn't put a dent in it. In fact it only got worse until the cream.
I'm glad it's gone!
My wife suggested antihistamines but I don't like the dopey sleepy feeling that gives me.....
Richard.
Richard, I'm glad you found something that works. There are antihistamines that are non drowsy. I am taking one daily again. I hate hearing something is a steroid but they aren't all prednisone in a large dose and it sounds like what you needed.
I hope your body is ready and going back to work works out well!
I am doing OK. Work... I don't realize how tired I am until I stop at the end of the shift. As long as I am busy I am OK but I do tire easily still.... But my stamina will come back in time. Thus disease just takes a lot out of us... I say us because we all know that. It's tiring.
I was told the cream was a cortisoid? Is that a steroid? I may try the non drowsy kind. It may be worth it if it works. I didn't think of that.
He said it was a very strong cream.
Yes... I am glad I found something that worked as it was getting worse. It was blistering on my fingers. Didn't hurt. But it had cleared up after two applications. I skipped a couple days but I can see its coming back as in red spots where it was prior. I just hope it stays on my arms. From what I understand you... I can get it anywhere on my skin.
It's great you are making it through the work day well. Hopefully you don't go crazy and over do it like I use to.
I have a nasty view of steroids and it's just because of what the devil prednisone did to everything else in my body and mind while fighting back my UC. As I said above, I am using a prescription steroid ointment around my eyes and it works well.
I take my daily antihistamine before bed. Maybe you could do that. I don't know what Benedryl's generic name is but my former PCP, who is my friend, had me taking it before I got on planes. It makes normal people drowsy. That was until she was on a plane with me and prescribed me Xanax from then on 
I don't have a rash like you did. I am constantly fighting dehydration and it feels like my body is taking moisture from my skin to help elsewhere. I am going to a dermatologist when I get back home. I did some on-line research and got a good body creme today. I feel much better.
diphenhydramine is the generic name for benadryl
I got autoimmune inner ear disease, v rare
