Author Topic: possible Sjogrens and ulcerative colitis--advice needed  (Read 171 times)

fadoozle

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possible Sjogrens and ulcerative colitis--advice needed
« on: December 06, 2017, 11:19:02 AM »
Hi all,

This will be a long message, and I apologize if it rambles, but I'm in a bit of a brain fog and could use some help.

I have visited this forum twice before: once in 2012 when I experienced dry eye and dry mouth which ultimately went away (the dry eye was diagnosed as blepharitis and I managed it with Refresh drops twice a day) and again in 2014 when those symptoms returned. In 2014 I ended up needing a cavity filled and went for dental cleanings every three months, but after a while the symptoms abated and until recently I didn't have any problems with dry mouth or dry eye to speak of. I had even seen a rheumatologist and had a normal Schirmers, normal work, etc. I was basically told it was just anxiety (which I struggle with regardless). During that whole period my ulcerative colitis was in symptomatic remission, and since everything calmed down I almost forgot about it ever having happened.

In late August I started to experience joint pain in my hands that I thought was related to my UC, which subsequently went into a severe flare. Usually when my UC flares the only symptoms I experience are related to my bowels, but this time around has been really different and I feel like I need some advice on how to proceed with my medical care.

When my flare started, I immediately lost my appetite and started experiencing abdominal bloating and a bad taste in my mouth, coated tongue--all the symptoms of reflux, but it didn't occur to me that that's what it was. For several weeks I tried different UC drugs and was ultimately put on a high dose of prednisone (60 mg to start) on October 24. I'm now down to 30 mg of prednisone and was also put on Humira last Friday to see if I can get off the prednisone.

The day I started on the prednisone I experienced a flushing/burning sensation in my cheeks that I'm still experiencing on and off. I see swelling in my jaw around my salivary glands but my husband (who thinks this is all related to my anxiety) says he doesn't notice it. I also felt the dry eye return; the eye doctor I saw when I first got on the prednisone said it was just blepharitis and as of yesterday I still had tears when I cried, but it's severe enough now that I need to use my eye compress mask and put in drops every few hours.

I have not had a normal appetite in four months. Still have the bloating. I am down about ten pounds from my usual weight. I finally went on Prilosec for the reflux five days ago and that seems to be helping a bit, but meanwhile I went to the dentist and discovered that the dry mouth has caused another cavity. I got a cleaning and fluoride treatment and some prescription fluoride treatment. My mouth is really dry now and I am not really able to eat without drinking water and feel like I need to chew gum all the time. My voice is really affected. My nose is dry as well, as are my ears. Sleeping past 4:00 am is challenging.

I made an appointment with a rheumatologist recommended on this forum but he's not available until January 25. I may get in on a cancellation, but here are my questions:

Has anyone else had the disease progress in a relapse/remitting way?

Can it progress so much in such a short time (basically zero to intense in four months)?

If I indeed have Sjogrens in addition to the UC, how can I get my care coordinated? Specialists always just seem to care about their area of expertise and I feel like I would need my MDs to talk to one another.

How is it possible that being on prednisone isn't even helping any of these symptoms improve?

How would being on a biologic for the UC impact Sjogrens?

Will I lose my voice entirely? Are there any medications that can help with this?

Any times on symptom relief until I can see the rheumatologist?

How do I stop blaming myself? Right before the flare I was really down, anxious, feeling like I was in a life crisis, not dealing with a lot of stuff out of fear. Is it possible that being in a bad mental place could have caused it to come back?

Any words of encouragement for continuing to function as a mom, wife, and homeschooling mother of two children ages 11 and 14?

Thank you.  :)
« Last Edit: December 06, 2017, 11:35:47 AM by fadoozle »

irish

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Re: possible Sjogrens and ulcerative colitis--advice needed
« Reply #1 on: December 06, 2017, 01:17:27 PM »
First of all quit blaming yourself. It is not yourself. Secondly, you have a diagnosed autoimmune disease which is ulcerative colitis and Sjogrens is very often also present. Also anxiety is very often present in autoimmune disease and it is not all in the head. I have felt for years that with the sjogrens we lose much of our bodily secretions such as tears, skin oil, mucus in stomach and colon, pancreatic enzymes, etc. So my unproven theory is why would it not be possible to decrease the amount of brain chemicals that our body produces.

These conditions can appear over night in full fledged flares and people can be very ill. Then there is the other side of the coin where it picks along for years and nickels and dimes you to death and the doctors label you a hypochondriac. Your husband needs to read the postings on this sight.
Some people are still looking for diagnosis but many of us have many diagnoses.

In have lost my teeth, hearing in one ear and some of hearing in the other ear. My voice has gotten hoarse and I have lost my singing voice. My balance is quite bad. I have 5 autoimmune diseases and 2 immne dificiencies. I have been on IVIG for 12 years and prednisone lower dose for 12 years, plaquenil and just started cellcept.

It took me 39 years to get diagnosed and it was very hard raising my kids but I made it. My hubby was gone with his job much of the week so I was alone that way, You do the things that are important and let the rest go til it needs to be done or your hubby and kids can help.
When you are home schooling that is the same as a full time job so do searches online on organization of homework and also housework to make your life easier.

You will have better days and not so good days and resting is important. Keep the crockpot handy for meals. Hubbies can be hard to deal with at times because they don't want to have anything disrupt their lives as they know it.....plus....they are scared cause things are getting beyond their understanding and control, Sometimes counseling is necessary.

The one important thing I always dwell on is the families ability to live frugally. Try to live in a home that will not cost you a bundle but will but homey and comfy for all. A person doesn't need the most expensive car or home or all the toys that are on the market. Buy the sports stuff at second hand or less stores.l Hand me downs from friends and relatives is great also. Learn to be happy where you are planted and know that your kids will learn things from their parents about dealing with illness and being kind to each other.

We raised 3 boys who now have fairly good jobs but don't live high. They were raised frugally and learned to work at an early age and I have never heard them say that they wished they had more "things" when they were young. Life is fast and fleeting and it is best to go with the flow. Know that you are in a tough place now and when your meds can get the body settled down things will be better. Also stress is hard on our autoimmune system so cut yourself some slack. Good luck. Irish

Deb 27

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Re: possible Sjogrens and ulcerative colitis--advice needed
« Reply #2 on: December 06, 2017, 03:40:29 PM »
Rule #1 for chronic disease= do not blame yourself!!!! It is not your fault. Sometimes things just happen.
Sorry you might have Sjogrens. I am thinking that the meds they put  you on for the UC will also help the Sjogrens. They are both auto immune diseases.
I had a rare form of colitis and had to get a resection back in 2010. During the time that I had colitis is when my other auto immune diseases developed like RA and Sjogrens.  I think it's all connected. 
My Sjogrens first started with a lot of cavities. I was 55 and had never needed a root canal but in one year I needed three.  My nose was dry at that point but really nothing else. It was slow to develop but two years ago a lip biopsy was positive. I am seronegative for both SJS and RA.

Whenever my colitis was flaring, I had anxiety with that.

I hope it all gets better. It sounds like the UC is pretty bad for you right now. When I had colitis, I had really bad reflux. Have you tried going dairy and gluten free to see if that helps??

Best of luck to you. Keep us posted.
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  prozac, Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, alpha lipoic acid, multi vitamin.

fadoozle

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Re: possible Sjogrens and ulcerative colitis--advice needed
« Reply #3 on: December 06, 2017, 03:45:00 PM »
Thanks so much for those kind replies.

Tonight I am struggling a lot with brain fog. Does it come and go? Do people ever feel mentally "all there" again?

cccourt1942

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Re: possible Sjogrens and ulcerative colitis--advice needed
« Reply #4 on: December 06, 2017, 04:50:22 PM »
Fad:  When there are no more tears (atrophied lacrimal glands) you still have the emotion.  You can still choke, and heave like one does when you are sad ..and are expecting to cry.  That's how I am right now as I read your message.  FYI: I haven't shed a tear since at least 1990.  I lived two decades just commenting that I had on tears left. 

You've already been told AI diseases are not your fault.  I realize you haven't been dxed, but "we" believe you are positive for at least SjS.  Even if you are not positive at this time of your life, keep up with yearly visits, you will be.

I want to say I believe you are "younger."  At this time, everyone's younger than I am...I'm 75.  My responses are those of an older individual....some symptoms due to age, others due to SjS.  But you want to know about your voice...and you note you wake up at 4:00am.  I was still practicing Speech Therapy part time as I had retired.  My voice itself didn't suffer.  My thirst level was off the charts.  A liter of water would be consumed..and the end of a session, I'd require another.  I had a group, I went to pee, I drank the water, and repeat.  I was at this level for about  a year.  I would wake up between 2 and 4 "coughing".  After I learned it was SjS, I realized I had been choking.  Not enough lubrication in my oral cavity and esophagus for a normal autonomic swallow. 

I am trying to shorten this, so I'm moving around here:  once you are dxed, even if you are dxed with sicca, you can start your oral meds.  In addition, you may require using an OTC pill for oral lubrication.  They are Xylimelts.  They're wonderful.  I mention them up front as you can buy them now. They will NOT cure you. Sometimes they aren't enough to relieve you.  They are better than nothing.  Since you are teaching, you can put one on the upper, back gum ridge and then it will gradually melt.  Personally, I couldn't use them on an all day basis.  Upset my stomach.  since you have UC, you would want to start gingerly.

I am going to stop here as you have been given some good advice.  I do want to say, if you are home schooling, and your husband is, well, let's say, like most husbands---not always supportive...your plate is full already.  I can't take away your "concerns."  (lose the word anxiety)  You just can't turn off your head!  Nor could I.  Do what you can, and tomorrow, start over.  All anyone can do. 

Your UC is primary for now.  Get that calmed. Since the prednisone is supposed to be calming your colon,  it's likely doing that. And yes, it does seem it would be calming the other areas.  Systemic inflammatory conditions are pernicious. They take their time developing, being full blown, and being diagnosed.  And Fad, it is a disease that can allow you to live a somewhat normal life.  Mine came and went.  I was nearly 72 when dxed.  Yes.  Know I had it for about 25 years.  It was the last five years I had treatment for various areas.  No dx as I never put all the symptoms together to one dr.  Take the prednisone, and let it do its job. Remember it's December..and your meds will end with the culmination of the 25th of Dec.  Do what you can  and let the rest go.  Tell hubby to pitch in.  Stuff CAN wait. 

I wish I could wave a wand, I wish I could give you magic words.  I can't. I can't even shed a tear for you.  I can feel for you.  We all send you our thoughts, and wishes for diagnosis, treatment, calm, and relief.  Stay here.  You are among friends. 
ccc
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

fadoozle

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Re: possible Sjogrens and ulcerative colitis--advice needed
« Reply #5 on: December 09, 2017, 06:58:17 AM »
Thanks to you all so much for those thoughtful replies. I really appreciate the emotional support.

Just in the past week or so my dry mouth and dry eyes have gotten a lot worse. I have Xylimelts and used one last night. It really helped. I'm also taking 20 mg of Prilosec for the reflux and have read that can cause dry mouth. Since I won't see a rheumatologist before the end of January, any thoughts on how to save my teeth until then? Should I stop the Prilosec and see if the dry mouth improves? I'm going back to the dentist to get a cavity filled on January 8 and am scared there will be so many more. When I chew Spry gum I am able to work up some saliva and I try to bathe my teeth in it as much as I can, but they still hurt a bit.

Meanwhile my husband thinks this is just anxiety, which is understandable because I *have* had a lot of health anxiety over the years. These symptoms are real and I would not wish them on anybody. He is not a believer in Sjogrens as a diagnosis so if I go through all the testing and come back negative I don't know how it will play out.

It's funny but looking back over the past six years I'm connecting a lot of dots as to how I got here. It's weird that I had two flares and went back to normal, but I believe this current one was slow forming and caused my UC to flare as it did as well, and now it's kind of in "whammo" mode. I'm 47 so it seems like it's not an unusual age for this to unfold. Even being on all this prednisone for the UC hasn't done a thing to curb/alleviate it.

My cheeks burn too. Will that ever stop? Do people's symptoms come and go (other than the dryness)? Have people managed to keep their teeth, at least for a while, even when the dry mouth is bad?

cccourt1942

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Re: possible Sjogrens and ulcerative colitis--advice needed
« Reply #6 on: December 09, 2017, 09:19:22 AM »
At night: a sip of water, a dab of Biotene oral balance GEL.  Other biotene products waste of money. Use your tongue to spread gel around your oral cavity including teeth.  Also , Clinipro toothpaste once a fat.  Avlbl on amazon if you dentist does not keep it. ccc
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

fadoozle

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Re: possible Sjogrens and ulcerative colitis--advice needed
« Reply #7 on: December 11, 2017, 05:51:45 AM »
Hi again all,

I am struggling. I am spending a ton of time researching on this forum and feeling like even at just about four months in to this flare, or whatever to call it, I am already dealing with central nervous system involvement. I suspect I have gastroparesis. I also have the sensation of burning in my cheeks (it comes and goes in severity and duration), and I feel this sense of depersonalization/anxiety/depression/brain fog, like I'm not all there. I feel like I've lost my personality and my sense of humor. I don't talk that much anymore and I feel like my sharp edge (what makes me "me") is gone, if that makes sense. I also have decreased sense of smell and taste.

The weird thing is that I have been on a high dose of prednisone almost since the onset of all these symptoms, and it's not helping. And I know that other than something like Cellcept that would be the treatment. Plus I'm already on Humira for my UC.

Since I can't get in to see a rheumatologist until January, I'm going to try to see my GP for some help.

Any advice on how to stop obsessing and try to live life until I have some more concrete answers? And how to deal with the fact that my husband thinks this is all just anxiety and OCD (and rightfully so, since I have struggled with anxiety and being a hypochondriac my whole life)?
« Last Edit: December 11, 2017, 05:57:59 AM by fadoozle »