Crohn's and Autoimmune Disease?

[saraca1975]

Hello,
I found this forum literally an hour ago and I'm a bit desperate for help and advice. Up until two weeks ago I had no idea what Crohn's disease was. If I may share my story I'd greatly appreciate any advice or thoughts/opinions.

My story: I gave birth to my daughter in 2008 and I haven't felt healthy since. I have a long history of minor Alopecia Areata and in July of 2010 I noticed the tell tale bald patches starting to appear on my scalp. I really didn't pay much attention to them at first because it's been my experience that ignoring the spots and not stressing over them will actually help the hair regrow faster. But by October of 2010 I had lost every hair on my head and my left eyebrow too - and the eyelashes on my left eye. So this was my first experience with Alopecia Totalis and it terrified me. Aside from the hair loss I felt physically weak with joint pain and headaches affecting me daily and I was severely constipated - and none of the OTC remedies were helping. My feet were often numb and my toes were frequently blue, sometimes purple/black, and very tingly with pain. I became very protective of my feet and stopped wearing open toed shoes or flops in the summer for fear that something would fall on them or someone would accidentally step on them. The smallest bump or pressure on my feet would cause me great pain.

I went to a Rheumatologist who ran a bunch of tests and I was diagnosed with Raynaud's and Hashimoto's disease during summer 2011. I started Synthroid soon after meeting with an Endocrinologist. I was so excited to finally have a name to what was causing me trouble and I just knew I was going to feel better after the medicine had a chance to work. But I still feel horrible today, over a year later. My joints seem to flare and ache and my fingers seem to have lost their strength. My vision changes constantly. My eyes are red all of the time and I have zero energy, terrible headaches, and the constipation is the worst! But the doctors ruled out MS and Sjogrens and even vitamin deficiencies. I was D deficient and had to do two weeks of mega doses of prescription D and now my D level is just fine. My eye doctor said my eye inflammation was from the thyroid disease and he told me to use drops to keep them moist.

In September of this year I experienced new symptoms. I kept thinking I had a UTI but every test from the doctor was negative. I had a nagging, pulling feeling in my bladder and I began to wonder if it was falling out of place or something. The pressure was unbearable and I constantly felt like I had to urinate - and most of the time I could. And I was getting up 4 or 5 times during the night to go. Twice the bladder pain sent me to the ER begging for someone to do something to relieve the pressure. They found calcium oxylate crystals in my urine and thought perhaps I had kidney stones. Subsequent urine tests no longer showed crystals. I went to my Internist and she thought I had cystitis. My OB/GYN gave me samples for Vesicare because he thought I had an overactive bladder. The bladder pain came and went for six weeks when a new symptom came about. My belly/abdomen became huge and distended. It was extremely uncomfortable and between feeling like I was six months pregnant and having the pressure on my bladder come and go...I felt like I was going crazy from the pain. And the constipation was so awful that I went to the ER again.

The combination of bladder pain and abdominal bloating were more than I could take. The ER found nothing wrong but they didn't really look that hard. And I felt so let down because I thought surely if I felt bad enough to go to the ER then they would find something wrong with me. I felt devastated and the ER doc couldn't figure out why I was so upset that there was nothing wrong with me. They did a urine dip and offered me pain meds which I declined because I'm intolerant of most pain meds except for Advil. I've since started taking Ultram for pain along with Zofran (sp?) for nausea so that I can keep the Ultram down. I saw my OBGYN after the ER visit because that's what the ER doc recommended - and I asked the OBGYN if I should see a urologist. He said no but he did want me to see a GI specialist and I agreed. I still made an appointment to see a Urologist and she ordered a renal ultrasound which showed hydroneuphrosis in my right kidney. She also noted damage to the renal cortex of both kidneys but thought it could be from having kidney infections as a child. The urologist performed a cystoscopy and found what she believes to be a fistula in my bladder.

I had no idea what that was but she said if the GI specialist I was about to see didn't order a CT scan then I was to let her know because she wanted a scan done by someone. So I met with the GI specialist and told him about my severe constipation and bladder pressure/pulling and other autoimmune diseases and he scheduled a colonoscopy. After the colonoscopy he said he thought I had Ulcerative colitis or possibly Crohn's disease. I have no idea what either of those diseases are and this is why I'm on this forum with all of you. The GI's office called this week to order a CT scan and also told me my ASCA antibodies, IGA and IGG, are both positive which suggests Crohn's. I had the CT scan yesterday and I feel like a sitting duck waiting for the results. I have so many questions, the first one being - Do I Have Crohn's Disease? I have Raynaud's, Endometriosis, Hashimotos, and Alopecia Areata - it's basically a Polyglandular Autoimmune Syndrome. I also have a raised, scaly, circular rash on both arms that no amount of cortizone will help.

What are the chances that I could have Crohn's on top of all of this? I've read conflicting articles about whether Crohn's is an autoimmune disease. Wiki states that Crohn's has been incorrectly referred to as an autoimmune disease. If there's a fistula in my bladder will I have to have surgery? Would Crohn's explain the symptoms I have but thought were from the thyroid disease? I read that Crohn's can cause arthritis and my Rheumatologist wants to treat my arthritis but I'm not ready to take these serious medications because my husband and I would like to have one more child. Is it possible to have a child after a Crohn's diagnosis? And if I have Crohn's would that explain the vision issues I've had? The vision in my left eye gets much worse during these flares - and the flares coincide with losing the hair from my left eyebrow (which will regrow and fall out in a continuous cycle). Is it possible to have these positive ASCA antibodies and NOT have Crohn's? I read a bit about Crohn's and the symptoms don't seem to fit me. I don't have diarrhea or bloody stools. My abdomen doesn't really cramp that much but sometimes I feel like something is squeezing my solar plexus and also the area underneath my bottom left rib feels like something is squeezing it. But I haven't lost any weight and I don't have frequent BM's.

I'm really confused and I'm so scared. And now with the holidays upon us I fear it will be another week before I get the CT scan results from my doctor. And I realize that I have just completely unloaded a lot of information in this forum. I'm sorry this is a rambling flood of questions that no one can really answer for me - but I'd really appreciate any brainstorming or suggestions or opinions about any of my conditions. Thanks so much!

 

[David]

Hi there and welcome to the community. I'm so sorry to hear what you've been through, you poor thing

1. I'll bet money that you have Crohn's disease. It explains SO MANY of your symptoms.

2. Crohn's disease can indeed cause a fistula from your intestine to your bladder Sometimes this can be closed with medication but most of the time it will require surgery, sorry.

3. You mentioned they tested for vitamin and mineral deficiencies. Which ones and what were your specific results? I ask because vitamin and mineral deficiencies in people with Crohn's disease are VERY common and would explain MANY of your symptoms.

4. Yes, the eye issues can be caused by Crohn's.

5. Many have had children after a Crohn's diagnosis. But be sure to communicate that desire to your GI.

I know this is devastating and overwhelming, but it may be for the best. I say that because if you have Crohn's, it would explain SO MUCH of what you have been going through. And if they properly manage it and get you into remission, you're going to feel better than you have in a long, long time.

We're here for you.

 

[wild_one353]

I have read other stories of people being diagnosed with crohn's and only having constipation as an initial symptom, so you could still have crohns disease, and very likely do have crohn's disease, but a gastroenterologist will be able to determine that with a higher degree of certainty.

I would recommend taking a b12 supplement right away, regardless of whatever they have told you about your tested levels being fine. Try a 500 microgram sublingual(under the tongue) of cyanocobalamin daily then reduce your dosages after a few weeks, but still take it as needed.

im curious what were some specifics about your child birth? was it a c-section by any chance?

 

[Hope345]

Saraca1975

Welcome to this forum, it will be so helpful for you to be able to reseach on this site and we are always here to give you support.

i am so sorry to hear of all you are going through. You have been through so much.
It sounds like you are on the right track now. The GI should be able to help you.

Try eating low fiber foods for awhile.
I notice you said you take Advil, do not take it any more, that can cause more problems. No anti inflammatory meds or aspirin. Tylenol is okay, with water and food.

Please keep us informed.
take care
Julie

 

[UnXmas]

You're right that you're missing some of the typical symptoms of Crohn's, but it is possible to have Crohn's and not have bleeding and diarrhoea. Since some of your test results are pointing towards it, it may be that you just have an atypical presentation of Crohn's. A colonoscopy and endoscopy and biopsies would be able to diagnose or rule out Crohn's.

I read that Crohn's can cause arthritis and my Rheumatologist wants to treat my arthritis but I'm not ready to take these serious medications because my husband and I would like to have one more child. Is it possible to have a child after a Crohn's diagnosis?

It's definitely possible. You would need to check with your doctor about which meds you could take during pregnancy, but having Crohn's doesn't stop you having children.

Also, having other medical conditions doesn't mean you can't have Crohn's too. I have an endocrine disease and osteroporosis as well, I don't think they're related to Crohn's, it's just by chance I ended up with more than one problem. If anything, it seems like having one condition makes you more likely to have another, as one health problem can result in complications and some - like autoimmune diseases - can involve multiple conditions stemming from the same cause (e.g. an immune system that doesn't function properly). I don't know whether your other conditions go along with Crohn's, but maybe your doctors would know.

 

[Mary:)]

I have Crohns and do not have diarrhea,blood in my stool,fever just severe pain. Mine is so bad I developed a fistula and was put on Humira. So everyone is different . David is right once you get a diagnosis it will make you feel better to know what your dealing with. Dont give up hope.

 

[saraca1975]

Thank you all for the thoughtful responses and support. I hope I'm replying in the correct way! :ysmile:

David: I'm thankful I have my last two years of labs available online and I can chart them. My vitamin D level was low (in the teens) and after a few weeks of the time released capsules I was able to get it up to 58. I've noticed a few things of interest that I pointed out to my doctor (my Internist) and she found them to be of little concern: 1. My Potassium is currently low but only just out of range. It's a 3.2 and the normal range is 3.5 to 5.5. But based on the results over the past two years, it's been a steady decline so I expect it to be lower next time. 2. My eiosinophil level has steadily increased over the past two years (from 2% to what is now 8%). My Internist told me that I'm "reaching" when I asked if this could be related to my symptoms.

Wildbill: Thank you for the B12 suggestion. I will give it a try! RE childbirth: no C-section. My daughter was 4 days late so I was induced and literally only had to push for 10 minutes. No problems at all!

Julie: I'm confused about low fiber. Every Dr. has advised me to increase fiber to help with the constipation. I even sprinkle it in my drinks! Could that be one of the reasons things have gotten worse do you think? And I will abstain from the Advil. This is a toughie, too, because of the issues with inflammation in my joints. Does Tylenol work for joint pain? If so, I'll definitely give it a try. Thanks!

UnXmas: You're absolutely correct about one disease making you more susceptible to another. It's like they travel in packs! Ugh! I'm sorry you've had to deal with these issues too. I can't wait to see what my GI doc thinks about the combination and susceptibility. I'll report back!

Mary: If I may ask...did you have to have surgery because of the fistula? And how is the Humira working for you? My Rheumatologist spoke very highly of it and said a lot of her patients are finding success with it.

Thanks again, everyone. I am so happy I found such a knowledgeable and kind group of people!
Best,
Sara

 

[Hope345]

Sara,

The doctors will probably prescribe Asacol for your antiiflammatory med. It is more mild, but safe for Crohns patients.

There are many people suffering with joint pain that could help.. Here is one thread that had been started.

http://www.crohnsforum.com/showthread.php?t=39002

Joint pain seems to be a symptom of Crohns and some medications.

I know there is so much to think about, the amount of information on this site is almost endless. There is current medical information available, support and the experience of others is so valuable.

Tylenol can help with some pain, but you will have to see if it helps you.

My daughter does not have diarrhea with her Crohns either. Hers is located in 3 spots on her colon. she continues to bleed, but we finally stopped her pain. (see below, for current meds she is taking.)

Each person is so different with their location and symptoms of Crohns.
I also found removing lactose from her diet helped ALOT.

Merry Christmas my dear... I hope you get all the help you need to put your Crohns into remission.

 

[Earnellzwifey]

Hi Sara and welcome

I am sorry that you are going through so much right now. I am glad that your drs are looking for a solution. I see that others have mentioned that you can have several autoimmune disorders together. I would like to add that I have about five autoimmune related conditions and I have heard others say that they have multiple immune issues. Humira has been known to help heal fistulas and this might be why your dr has recommended it. Here is a link about that medication. I hope you find relief and answers soon.

http://www.crohnsforum.com/forumdisplay.php?f=59

Here is a link to the forum about fistulas

http://www.crohnsforum.com/forumdisplay.php?f=76

hope these help.

 

[Tenacity]

Hi there and welcome to the forum!

As I was reading your post, I thought to myself - she must have Raynaud's syndrome (my child has this), but then you said you were diagnosed. Then as I read further I thought - oh maybe they should test for ms, and saw that you had that done too. It seems that you have done a very good job in getting really good, thorough medical care.

The obvious choice for you would be one of the biologics such as Humira or Remicade, as it treats both the Crohns and the Rheumatoid Arthritis, but you mentioned that you would like to have another child. I know some people have used Remicade throughout their 1st and 2nd trimester, and some throughout the entire pregnancy without any problems, but I can totally understand your apprehension.

Both my son and I have more than one autoimmune disease - so unfortunately, I think you many be right in that they can run hand in hand sometimes.

When you first notice the hair loss, would steroid injections make a difference - or does that only promote the regrowth when it is patchy?

Please let us know what the test shows? I too think that there is a very good chance it is crohns (not ulcerative colities). If this is the case, you may want to really consider going on the best meds for yourself, to prevent any further symptoms.

 

[David]

David: I'm thankful I have my last two years of labs available online and I can chart them. My vitamin D level was low (in the teens) and after a few weeks of the time released capsules I was able to get it up to 58. I've noticed a few things of interest that I pointed out to my doctor (my Internist) and she found them to be of little concern: 1. My Potassium is currently low but only just out of range. It's a 3.2 and the normal range is 3.5 to 5.5. But based on the results over the past two years, it's been a steady decline so I expect it to be lower next time. 2. My eiosinophil level has steadily increased over the past two years (from 2% to what is now 8%). My Internist told me that I'm "reaching" when I asked if this could be related to my symptoms.

1. I agree that you should get your vitamin B12 level tested.

2. Potassium deficiency in people with Crohn's disease is often a result of an underlying magnesium deficiency (this is VERY common). Magnesium is known to play a part in over 300 metabolic reactions in the body and when you described your symptoms, I was thinking magnesium deficiency for some of them.

3. If you are diagnosed with a form of IBD, be sure to print this out and take it to your internist.

 

[saraca1975]

Thanks all!

I can see why many of us are so frustrated. I never realized how difficult and nerve wracking it is to get a diagnosis. Here's where I am currently:

Abdominal CT was negative. GI doc ordered pillcam but insurance would not cover it until I did a small bowel follow through. I did the small bowel follow through three days ago and I finished in less than an hour! Go me! That too was negative. Pillcam is scheduled for next week.

So really all I've got to go on are the positive ASCA antibodies and a few pictures of my colon with red spots in various places. I guess I'll just have to be patient. I assume what my Urologist thought was a fistula must not have been since both the CT and follow through came back negative. I would like to know what it was/is that she saw. Very odd.

Tenacity: RE the alopecia. I've dealt with it on and off for close to 20 years. For the most part the patches have been no larger than a quarter and with no more than two or three at any given time. This is the first time I have lost all of my hair. It's growing back but it's very dry and brittle and clearly unhealthy. In the past, the hair I regrew was always healthy. I've tried the kenalog injections and a few different topical steroids but what worked for me the best was ignoring it.

 

[Tania Hall]

So sorry ... I have Crohns, Alopecia a Areata, Raynauds, Essential Tremor and C. diff... Why are we suffering with all of these Autoimmune Diseases?