Help with "symptoms", Length of episodes, how long it took for a proper diagnosis of IBS and/or Colitis

I know we have a discussion/course on Colitis that is new. I have questions in regard to IBS and/or Colitis for those who either suffer from it or are caretakers, or know someone with it. I was diagnosed almost a year ago with what we all thought was “C.Diff”. I had ALL of the symptoms, & it was so highly contagious, i “thought” I would have it 10 to 15 DAYS, then it seemed to go away only to “reappear” suddenly with no rhyme or reason. It is “still having issues” so bad at times i can’t even leave the house at all. It has been a major disaster for my life. Between COVID, “the severity of symptoms from what they thought was C.Diff, & my other health problems” I’ve been a prisoner in home I feel like. I had an “extensive” study and those LAB results showed NO C.DIFF, no parasites, no other "bacteria etc to cause my horrid symptoms. I lost weight and whatever I ate no matter if I tried to “not eat” something “and eat others” nothing worked. So, my PCP at this time is thinking it could be either IBS OR Colitis. If some of you will give me some of your personal experiences with these. I will go to a specialist but at this time my county & town itself is very high in the COVID-19 range. THANKS in Advance for any of your thoughts and personal dealings with this terrible chronic illness. Rhia

Hi Rhia,

Thank you for you question. I’m sorry that you are going through this. Have you been on irritablebowelsyndrome.net? I would recommend posting your question in the forum section on the IBS website so that you can get more responses. You can also search for articles from other patient leaders regarding c.diff; I checked and there are a few articles on there. This article might be really helpful.

Another great place to post your question would be on the IBS Facebook page. There are many people in this community who I’m sure can relate to you.

I hope this helps a bit.

Warmly,
Elizabeth

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Thanks so much for the information Elizabeth! I’ll check these out! It is a nightmare! When you feel you fear even walking out your front door… mucID…feel like I am a prisoner in my home… like a ghost rattling a ball and chains… keeping me from everything and everyone I love!!!

That is very powerful Rhia. I’m sending my love to you. I hope that you can do something relaxing for yourself tonight. We’re all here for you and I hope that those links have been helpful. - Warmly, Elizabeth

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UPDATE It took over 6 months but I now know I have “Lupus Colitis” which is what all of my colon issues are from.

Again Thank you Elizabeth! I “believe” between my own research and keeping up with how this has changed, evolved, what I do, eat or don’t do, or don’t eat that tends to bring it on and so forth… PLUS my extremely incredible PCP… who 1st diagnosed my Lupus after years and years of not 1 doctor saying “yes” it is Lupus etc… I had an appointment with him yesterday. WE feel this could be “Lupus Colitis”. I am having a horrible Lupus flare, that has given me what I call “a Lupus Migraine”. They are not like a regular Migraine, which I had from the time I was 17 years old. These type will NOT respond to typical “pain medications”. The ONLY thing that gets rid of them is a corticosteroid shot and a step down 7 day Prednisone script. So, as we talked he feels and I concur that I probably have “Lupus Colitis”. We are watching to see if this shot and the script tends to slow down or stop the horrid symptoms, lower intestinal pain, travels from right to left, extreme fatigue, losing weight again, the nightmare of again not being even able to walk out of my home, in fear it will “hit” & I just don’t make it to the bathroom OR now, due to this new “pain” in my lower intestines, I now can catch it in time sometimes, and not have an accident! Plus my RA is acting up and the medication my rheumy has me on at the moment “alone” is not working. Just seems to be yet another couple of “new issues” like now suddenly my lab work shows I probably will have to go on medication for “high” TSH (thyroid") & I already have HIGH “PTH” Para-thyroid issues. But, as “terrible” as this may sound I kind of HOPE it is caused from Lupus! If so, WE know how t treat it, and I don’t have to go to yet another specialist for now. I’ve been keeping up with what I “eat” and maybe miss eating to see what tends to bring on the symptoms and how bad. Plus STRESS, can really cause it to act up. I tend to have “rare disorders” or ones I developed like Osteoarthritis in my early 20’s… and at the time the doctors said that was an “old persons disease” & I could not possibly have it! Well, NOW they KNOW even infants can be born with “Juvenile RA”… back in my teens and 20’s they really didn’t even know what Lupus or RA, or many autoimmune illnesses were. Have a good weekend all! Be well, stay safe… & Have HOPE!

It continues to come and go. I went 65 days WITascially H NO SYMPTOMS of Lupus Colitis. I KNEW it could return but hoped it would not for a while. After the last two weeks of stress from eye doctor, new glasses and the cost, then my new pain doctor and having my pain pump finally refilled, after 6 MONTHS! My Prior Pain Specialist of 13 years basically retired without notice. So GOOD to GREAT Pain Specialist now. I so far am very fortunate. I do have a new one much closer; 15 minutes away. But he has some quirks He only filled it with 20 rather than the 40 of medication it holds. Then I found out from a Rep who as there from the company who makes the pup my pump needs to be replaced BY DEC 26TH! It is 7 years old, and I knew it was coming soon, but did not expect it this soon. Plus my collarbone and shoulder blades are both still FRACTURED! And they are not sure after CT Scans if they can even be fixed, plus my reverse replacement in that shoulder has almost came loose due to my rotator cuff almost being gone from chronic tears. I need to see a shoulder specialist, but I also have “severe range” of Osteoporosis, which makes it even more complicated. When my Orthopedic Surgeon I see AND my PCP both say, “What a Mess!” after they saw the CT reports, you know it’s bad! I knew it by looking at the CT reports anyway. So, suddenly on top of it all, I had the Lupus COlitis suddenly come on Thursday afternoon without warning. It seems to never end.