LUPUS UK

Lupus and Ulcerative colitis

My lupus diagnosis was about 4 yrs. Ago. When I was 22 ...57 now...i was in and out of hospital with major surgeries for UC. The large intestine was completely ulcerated and eventually was removed. Thank God for small intestines! This proved a cure for the UC but as I look back, i have had lupus symptoms starting in childhood. I had Raynauds..headaches...trouble sleeping...joint pain. They were all written off as growing pains. Some of my doctors have told me that the UC and Lupus go hand in hand. Of course other doctors say its possible but no difinitive answer. Has anyone had digestive issues with lupus?

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i attend a connective tissue disorder clinic, which seems to be where they round up those who don't have RA. I have Secondary Raynaud's. However, all my problems started over four years ago in my upper digestive tract, and the joint pains and malar rashes followed. My bowels are beginning to be affected too. They had previously diagnosed dysmotility and fortunately the scars from the oesophagul ulcers have healed but make it very hard to keep weight on,There are lots of us here with over lapping conditions, and many relate to the digestion so you'll get plenty of responses.

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Thank you for your response. My ulcerative colitis at age 22 seemed to come out of no where...at least I thought so at the time. Looking back everything kind of adds up. I am pretty sure I had lupus as a child. I am sorry about your digestive issues. I know first hand how traumatizing bowel issues are. I had several surgeries and kind of lost my dignity for a while....it was so invasive. So nice to have found this support group. What can be done for dysmotility?

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When my lupus was untreated i suffered with many digestive issues. It often took a long time for me to digest food and I would sometimes feel like vomiting. However, a few months after my medication my digestion has been quite good. I go to the toilet regularly and barely have belly aches or feel like vomiting.

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Hi albrtna....thanks for replying. I suffered with bowel issues for years before my lupus diagnosis. I have been doing so much better in that area. The lupus diagnosis has been hard for me to accept. The first 2 years I was in denial and I have discovered that is not a healthy place to be. That's why I joined this group. Thank you so much for your response. Barbara

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Hi barbarajeand

So sorry to read what a terrible time you've had with UC and lupus over the years!.

I had UC diagnosed out of the blue seven years ago, have had a lupus like illness over thirty years . I guess it's the inflammation of that affecting the bowel!. Have been told it's quite rare to have UC with lupus, more common is IBS because of all the stress!. Big shock it was. Luckily I'm not as bad as you were but mine isn't easy to control despite treatment and is an extra I can do without!. It does affect day to day life so much!.

Hope your getting on ok without your colon? Was it a liberation?. X

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Hi Misty14...so sorry about your UC diagnosis. Hope the treatment helps you. Years ago i was put on prednisone and sulfasalizine but nothing helped me. It eventually required so many surgeries that I lost count. I had to have a temporary ileostomy a few times after surgery then after surgery to reconnect the intestine the UC seemed to always come back. I finally was blessed to be seen by a colorectal surgeon at The Cleveland Clinic Foundation and underwent surgery for a k-pouch. So...yes having the large intestine removed was very liberating. The k-pouch is such a blessing and everytime I empty it I thank God. It is an ostomy without any external appliance (a bag). I insert a catheter through a stoma on my abdomen and empty the internal pouch....then just place a cotton round to cover the stoma. I have had it for over 20 years. Thank you for replying!

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Hi Barbara

You really have been thru it badly with UC but hurrah for k- pouch!. Medical innovations are wonderful!. I'm so glad it's helped you so much, you must have been sick of it all!.

I'm not having an easy time of it just now as been lowering the steroids, got to 7.5mg and it keeps flaring. Awaiting my Gadtro's decision to do a colonoscopy to see what changes there may have been. Horrid test but worth it for better treatment. What treatment are you on for the lupus?. Must have been a shock to you to be diagnosed two years ago!. Once your diagnosed with one auto-immune condition we can collect others!. A consultant told me that!. I hope you like the forum and gain lots of benefit from it. X

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Hi Misty14...I am sorry your UC is flaring, I feel your pain. I will be sure to include you in my prayers. I agree with you about the colonoscopy.....dreadful isn't it? I think I lost my dignity years ago due to that test! But...where would we be without it? It is a necessity for treatment. Hang in there and keep me posted on your progress.🌸

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Hi barbarajeand

Thank you for your lovely reply. Really appreciate it!. I so agree about the loss of dignity and colonosvopy's !. It's funny but I now feel having gone thru several of those tests a kind of liberation that I can cope with anything!. I also feel I can trust my Gastro so much because he knows more about my innards than I do!. I hope next week I hear if he's made decision to go ahead. Id rather just do it , it's horrid having it hanging over!. You sound like a similar positive person like I am because of the decisions you've had to make!. Take care too. X💐💚

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Sorry to hear you've been diagnosed with Lupus as well and yes it is a bit of a shock (and makes us think how long have I had it then?).

I think a lot of us have a two or more autoimmune conditions, which often was initially detectable though some kind of digestive problems (my first one was reflux, though like you I also had joint pains as a child...something I can't get the docs to discuss). I also wonder about family members with UC who haven't been tested for Lupus, despite having joint pains etc.

I've done quite well on the digestive front I think my radically altering my diet (I won't go into that because different schemas work for different people) and taking the medication. Now I wish the rest would sort itself out!

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Hi Treetop33...many thanks for your reply. It seems I have had so much sickness in my early years that I thought I had great health to look forward to as I got older. So...yes the lupus diagnosis was a shock. I am told I am on the milder side....whatever that means. I have tried the plaquenil but with my k-pouch it caused severe diarrhea and I had to empty the pouch constantly and began to be so light headed and dizzy that I had to stop. My bloodwork is good...so I was put on sulfasalizine by the rheumatologist. I am unsure why she decided on this medication. So glad you got your diet all worked out. Thanks again for replying. Such a nice group of people here. Glad I found you😃

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Glad you’re here barabarajeand...i think many of us can relate to the combo of lupus & inflammatory process active in the GI tract.

My lupus was infant onset, and i have Hypermobile Ehlers Danlos Syndrome + early onset Primary Immunodeficiency (hypogammaglobulinaemia), which have both affected my GI tract from mouth to a**s...as i understand it, it’s the SLE + its secondaries (early onset sjogrens, small vessel vasculitis, a pinch of scleroderma etc) that have been causing the chronic inflammatory conditions diagnosed very early in in my mouth, oesophagus, stomach, duodenum and also bowels.

I am 64 now, and segueing from Intestinal Insufficiency into Intestinal Failure and Pseudo Obstruction due to slow transit dysmotility & visceral hyperreactivity, but so far increased immunosuppression + daily antibiotics + no roughage (no fruit & veg, no whole grains etc) diet + the insoluble nonfermentable bulking agent methylcellulose are helping me avoid liquid nutrition, parenteral/enteral feeding. Gastroenterology tell me i’ve been doing a great job of managing this all my life...which is nice of them, but doesn’t help with the daily grind of living with this...on the other hand, this wonderful forum does help LOTS!

My husband has early onset crohns which went into remission several years ago after a lifetime of major bowel resections. He is now very fit & in more active retirement than we could ever have imagined.. His sister has been less lucky, having vaginal/rectal fistula & full colon removed with ileostomy. But she continues to be an active person leading a full life (she is in better shape than me, although older). My mother’s rectum cancer resulted in permanent colostomy years ago. So i have a lot of experience first & second hand of bowel stuff and am v much relating to your post. Last night when i read your words, i didn’t have time to reply, but i felt certain you’d get great replies, and this morning i see you have! I hope they’re helping

This forum has made a HUGE positive diff to coping with everything immune dysfunction & connective disorder throws at me...i’ve been here nearly 7 years now..lit’s my home away from home. I’ve spent time on other lupus forums: none are as great as this one...it’s full of experienced, truly wise, well informed, sensible folk...LUK monitors it closely so there is no bad stuff...we have FUN too a lot of the time...basically, i think this forum is THE BEST MEDICINE...i hope you find it is good for you too

Apologies for the long reply, but all this is close to my heart

Am wishing you every best wish, and hope you’ll let us know how you get on

🍀🍀🍀🍀 coco

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Oh my goodness barnclown...my heart goes out to you. You really have alot on your plate. It is amazing what the body can take isn't it? I will have to look up some of the diagnosis you wrote about so I can gain a better understanding. I hope to learn as much as I can in order to be a source of support for you. I remembet there were a few times during the harshes stages of my UC drama I had to have TPN a few times. Depression set in very badly. Being fed through a vein was very traumatizing but it saved my life and was eventually taken off and was able to eat again. The k-pouch was such a blessing and I thank God every day for it. So glad your husband has the Crohn's under control. This bowel stuff is so traumatizing isn't it? You really do have first hand ecperience in all of this. Your husband's sister sounds like me. Right before I had my k-pouch surgery I also had recto/vaginal fistulas and was so under weight....It was one of the most painful experiences I have ever had. I thought I was going to die. But...God led me to a wonderful surgeon who was actually quite well known for his expertise in bowel surgery...his name was Dr. Victor Fazio. He has since passed away but he saved my life. I agree with you about this forum...the people are so kind and warm and open. Thank you so much for sharing your story with me and I hope to chat with you again.

Blessings

Barbara

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Thanks my dear....you have a wonderful way with words: i’ll be so glad to read your contributions here!

K pouch surgery is such a wonderful development...and your surgeon was heroic....and your positive attitude is an inspiration to us all

Am vvvv grateful for all your kind thoughtfulness re my “stuff”...my crohns family + several here on my forums are also reassuring me re liquid feeding...i am feeling less anxious + more resigned & openminded about that.

The unusual prob in my case is that SLE + daily immunosuppression meds + early onset Primary Immunodeficiency (hypogammaglobulinaemia G,A,M (not due to immunosuppression meds)) make me at such high risk of infection that gastroenterology is very worried about parenteral/enteral feeding (which inevitably is fraught with infection side effects even in patients without PID). So all my consultants are determined to keep me taking nutrition by mouth as long as poss...the up side of this is that gastroenterology + rheumatology + immunology are giving my case their full attention, hurrah!

😘🍀😘🍀

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Yes...k-pouch surgery was a blessing. The surgeon was an expert and was quite brilliant. He was also very personable....when he passed away I was devastated.

I am glad you are feeling less anxious about the liquid feeding. I had to have it in order to build myself back before I could have surgery...I knew it wasn't forever and it saved my life. I was so underweight and very sick. So glad you have this forum as well as others to calm your fears.

I looked up your diagnosis of PID and must confess it is a little confusing to me...I wondered if you could explain it a little better for me.

Blessings🌸

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Thanks again....am so glad you & that surgeon did find one another💐

🤗 The basic explanation my consultants give me is that PID is a bone marrow dysfunction illness which, in my case, is not due to the immunosuppression meds i take for my infant onset lupus + its secondary conditions. So i am allowed to continue on daily immunosppression meds.

Because PID puts patients at v high risk of infection, PID treatment is mainly daily prophylactic antibiotics for ever and intravenous immunoglobulins (IVIG). Eg my immunology clinic has had me on daily coamoxiclav for several years

This link has helped me a lot to understand PID:

piduk.org

A PID expert i know recently explained:

Certain types of [PID eg Common Variable Immunodeficiency aka CVID, which is my type] are especially linked with autoimmune conditions like type 1 diabetes, inflammatory bowel disease, psoriasis etc.

Here is a link to a current post on this forum discussing this subject (it includes the above explanation):

healthunlocked.com/lupusuk/...

I hope something in all that helps you to feel less confused about the coexistance of PID & autoimmunity. I was confused when i was first diagnosed with PID several years ago. But i’m gradually getting the hang of understanding as much as i need to about this 😉

😘🍀😘🍀 coco

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Hi!

I was diagnosed with UC at age 16. I'm now 37. The UC would flare up during times of stress and had gotten really bad a few years ago. At that time I had an array of symptoms come on and started searching for the problem. I was finally diagnosed with Lupus in May 2017 and started treatment.

My Rheumy says it is very likely that I have had Lupus all along which caused the UC as well as all types of other health issues such as migraines, respiratory problems, etc. I was also diagnosed with Addison's Disease in 2016 and we believe that too was Lupus related.

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Hi Bmagrl

Rheumatologist told me the same thing. This lupus diagnosis is still new to me because at first I would not accept it. I chose denial. My husband was dying and I was his caretaker so I chose to not accept it...it was placed on the back burner so to speak. So, now I have to deal with it and learn all I can. Depression still gets me now and then....still mourning a lot of loss. How are your dealing with your UC? I am sorry you are dealing with so much. I wasn't familiar with Addison's Disease so i looked it up. How are you dealing with it? Hope this forum helps you. Thank you for sharing your story...I appreciate your openness.

Blessings

Barbara

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Hi Barbara,

As of right now the UC is doing great! The past 4 years, when I started getting in such bad shape and was searching for a diagnosis, it was pretty rough. However, I realized a few months ago that I hadn't had any trouble out of the UC since a month or so after my diagnosis. I'm guessing all the immunosuppressant meds are helping keep it at bay. It's funny how I didn't really notice that it was gone until recently. I guess I was having so many other health issues that it fell by the wayside? Whatever the cause, meds or just coincidence, I'm thrilled that it's one less issue bothering me.

Not many people are familiar with Addison's disease, it's kind of rare;) It has been out of control for the past couple years. Very difficult to deal with. My Endocrinologist says that since Addison's is a disease that reacts to illnesses, stress, etc...that it's no wonder why I'm having such issues w it. The Lupus always has my body stressed so therefore the Addison's reacts. It's kind of like a domino effect with one disease feeding off another. I'm constantly having to take extra steroids to keep from having an Addison's crisis. I'm super sun/light sensitive from the Lupus and that became a massive issue this past summer. If I even thought about going outside my body would freak out and I'd have a crisis so at least I'm getting a little break from that now that it's winter! Silver lining;)

I'm very sorry to hear about your loss! I think sometimes that traumatic and stressful things like that trigger illnesses like Lupus to go into high gear. When I first starting getting bad and searching for answers I had just finished burying my mom who had suffered for many months with cancer and helping my husband go thru several surgeries after a workplace injury. It was like all those months of grief and stress just put me past my limit and symptoms that had come and gone for years all got way worse and many more piled on. That pushed me into doing something

This site is great and it's so nice to have people who are going through what I am to lean on. Feel free to ask any questions bc I'm always happy to try and help someone!

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Hi Bmagrl

So sorry it has taken me so long to reply to you. I have not been feeling too well and I had to go to my gynocologist today and it just about wore me out. I have a wonderful gynocologist but she is 2 hrs. away from where I live...but I don't mind because she is mindful of my lupus and treats me as a whole person. Did you know lupus can affect the vaginal tissue? I know what you mean when you say one disease feeds off the other. I am so exhausted just from the trip and now this! It's called lichen planus...autoimmune as well. I thank God for this gynocologist, she is so warm and caring...that means so much.

I am sorry for the loss of your Mom....it is so hard isn't it? That type of stress does kick lupus into high gear. Since my husband passed I have tried meditation to ease stress and it really helps. I also set really good boundaries with what I will and will not allow in my life. I do not like high drama....it sets me on edge.

Thank you for explaining Addison's disease....i have been reading about it to understand it better. I am like you when it comes to sunlight. I have a screened in back porch and that really helps in the summer. How is your husband doing now?

I agree with you, this site is wonderful...the people are so warm and nurturing. Love hearing from you!

Barbara

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It is so important to reduce the time it takes to diagnose SLE and all the many other autoimmune conditions. Easy to say, the earlier the treatment starts the better the outcome. Best wishes Kevin

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I agree with you Kevin!

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Kevin you are absolutely right! When I first went to a gp about some of my symptoms he blew me off. I found out 3 years later that some bloodwork he had taken showed me having a pretty high ANA and I was never told. He didn't bother to call me with the results which was ridiculous bc I had gone to see him to see if Lupus was a possibility upon recommendation of another dr.

I did end up finding out about the lab results on my own and got diagnosed but it was years later and by then I had Addison's which is incurable. Had he done his job and I had gotten treatment for Lupus I prob wouldn't have ended up with Addison's.

Early detection and treatment are beyond important when dealing with destructive diseases such as lupus

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Hi Barbara

How are you getting on with your lupus symptoms?. Hope you are feeling better.

Thank you for your lovely message. Could I ask you have you tried Budesonide, a topical steroid treatment for UC?. Did it help?. Have heard from my Gastro that he wants me to try this and if it doesn't work then he'll do a colonoscopy!. Might escape it which will be very helpful!.

Hope your warm and cosy. X

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Hi Misty,

So nice to hear from you again! I have never taken the medication Budenoside. I had most of my treatment and surgerys in the 1980's....i am not sure the medication was available then. I was mostly on sulfasalizine and prednisone and a drug I remember called Bentyl. Have you ever tried that? I was wondering if they still offer that drug for U.C.

I know it is frightening to start a new medication...I usually get so anxious about it. Let me know how it goes once you do try it. U.C. is so debilitating...at least it was for me. I got to the point of going up to 20 times per day!☹ How are you feeling? How long have you haf this diagnosis? Please feel free to contact me anytime.

Barbara

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