Ischemic intestinal syndromes???

I have been doing research and was looking at Ischemic intestinal issues ( vascular issues in the intestines). I have been having bad intestinal pains for almost 2 years now. I have had a couple periods where I felt good and free of symptoms but it always comes back. My main symptoms are moderate to severe crampy pains throughout my intestines, having the feeling like I always gotta go ( but I usually go once a day). I sit most days with the heating pad but I am sure if I was moving around I would be at the toilet more. I have had tests done like MRE of the small bowel, colonoscopy, stool cultures, blood work, abdominal ultrasound. They have all been normal for the most part. My gastro thinks IBS. I disagree.

I have other health issues including ( interstitial cystitis of the bladder, chronic UTI's, fibromyalgia, possible connestive tissue issues, I was told I had an undifferenciated connective tissue disease, chronic muscle pains, severe fatigue lately, headaches etc.... The list goes on and on.

I started researching and found this intestinal ischemic syndromes that can cause the same symptoms as IBD and IBS. Has anyone here ever heard of these syndromes?? What kind of doctor would diagnose this? My gastro never even mentioned this to me so I doubt he would be useful in this. It is very serious and can become life threatening from what I have read. I am still new into looking into this but wondered if anyone on here has heard of this???

I've had a couple of scans for mesenteric vasculitis which were clear. GI thinks there may be some small vessels affected by vasculitis not visible on the MRI caused by lupus. Who knows.

What kind of scans did they do? My gastro did not even mention Vasculitis as a possible issue for me. I just researched it on my own and I have some of the symptoms. I also have other health issues that could be related to it, but not sure. I am trying to get an appointment with a rheumatologist to get checked since they are the ones who deal with this supposedly.

lsgs said:

I've had a couple of scans for mesenteric vasculitis which were clear. GI thinks there may be some small vessels affected by vasculitis not visible on the MRI caused by lupus. Who knows.

Click to expand...

Oh, I feel for you! With connective tissue disease, that throws everything up in the air! I would say that if it is possible, could you maybe persuade your GI doc to communicate with your rheumatologist? I am classified as Mixed Connective Tissue right now. (started off as lupus 25 years ago.) The more time goes on, the more it crosses into other systems. I have small blood vessel vasculitis, and was actually on oxygen 24/7 all last summer, along with prednisone. They are trying to figure out why the prednisone helped my stomach issues too. I see that you are on plaquenil too. I was taken off of it several months ago, as they thought it was adding to the GI problems. I wish I had some answers for you!

Ihurt said:

What kind of scans did they do? My gastro did not even mention Vasculitis as a possible issue for me. I just researched it on my own and I have some of the symptoms. I also have other health issues that could be related to it, but not sure. I am trying to get an appointment with a rheumatologist to get checked since they are the ones who deal with this supposedly.

Click to expand...

I had an MRI with gadolinium contrast.

fozheart said:

Oh, I feel for you! With connective tissue disease, that throws everything up in the air! I would say that if it is possible, could you maybe persuade your GI doc to communicate with your rheumatologist? I am classified as Mixed Connective Tissue right now. (started off as lupus 25 years ago.) The more time goes on, the more it crosses into other systems. I have small blood vessel vasculitis, and was actually on oxygen 24/7 all last summer, along with prednisone. They are trying to figure out why the prednisone helped my stomach issues too. I see that you are on plaquenil too. I was taken off of it several months ago, as they thought it was adding to the GI problems. I wish I had some answers for you!

Click to expand...

I'm guessing you're meaning me??? It's really interesting I was on plaquenil for just about a year and I ended up losing so much weight I was hospitalised. I had severe abdominal pain. I wouldn't say it caused the stomach pain and appetite loss as it's still there, but it certainly made things a lot worse. They eventually took me off it and I felt like I improved.

I got this totally random call from my GI saying 'I've spoken to your other doctors and we think you might have lupus and small vessel vasculitis BYE' lol and that was it, no follow up or anything :ybatty:

fozheart said:

Oh, I feel for you! With connective tissue disease, that throws everything up in the air! I would say that if it is possible, could you maybe persuade your GI doc to communicate with your rheumatologist? I am classified as Mixed Connective Tissue right now. (started off as lupus 25 years ago.) The more time goes on, the more it crosses into other systems. I have small blood vessel vasculitis, and was actually on oxygen 24/7 all last summer, along with prednisone. They are trying to figure out why the prednisone helped my stomach issues too. I see that you are on plaquenil too. I was taken off of it several months ago, as they thought it was adding to the GI problems. I wish I had some answers for you!

Click to expand...

I have a connective tissue disease but it seems to cause me neurological symptoms - I'm seen by neurologists, though I did see a rheumatologist once. She referred me to neurologists though, and I didn't have to have any scans to diagnose me. But I've never heard of ischemic intestinal syndromes. I've heard of mesenteric ischemia, but I'm not sure that's what this thread is about as as far as I know it's an acute, emergency condition. I've heard of vasculitis but didn't know it would cause IBS/IBD symptoms.

So I guess I'm a bit confused about what you're referring to, Ihurt. Do you have a link to any of the pages you found researching?

Not sure if this is helpful or not, but there is a strong link between excessive blood clotting and Crohn's, so maybe you have symptoms from both?

Unxmas: I actually just started reading up on the Vasculitis issues. Intestinal Ischemic issues can be chronic too from what I have read. I googled Intetsinal ischemic syndromes and looked at the Mayo clinic website. They said Intestinal ischemic conditions is when Vasculitis effects the intestines. It can cause severe pain and all of the crohns symptoms. For some people they can have episodes that last a few days to weeks to even longer( they call it chronic). But anyone who has chronic intestinal ischemic issues, it can turn acute at any given time which means that your blood supply to the intestines gets completely blocked and this is an emergency. I guess if that happens the tissue starts to die ( gangrene) and you need to have emergency surgery or you will die. From what I read the vasculitis can effect any part of the body but they say the most dangerous organs it can effect is the intestines and the kidneys.

I am not sure if I have this or not, I am just looking in that direction. I mean I have had a lot of issues that could not be explained and have had some of the symptom's listed with this. Surprisingly not one of the doctors or specialists I have seen mentioned this. I am going to try and see a rheumatologist to see if he can check me for this at least if anything to rule it out.

That sounds like a good idea, Ihurt. Connective tissue diseases cause so many different symptoms and often don't show up on many tests. The rheumatologist I saw was excellent. She knew how to diagnose me just by symptoms, even though most of my symptoms were neurological. I think possibly doctors overlook this type of illness because it affects so many parts of the body. If you see a gastroenterologist, he/she often only focusses on your digestion problems, and might not consider that they could be part of a wider illness.

Even if you don't have ischemic problems, it may be that a rheumatologist can help you with getting diagnosed as he/she may be more used to looking at the whole body and systemic diseases, and might be able to see how your bladder and bowel problems might fit together.

I am sorry for losing track of this thread...I still need to write my story and get on board, but I am very interested in the connective tissue disease overlap that you also have, UnXmas, Ihurt and Isgs!

I have gone back and forth on plaquenil for 20 years, and had a stomach of steel until my 2010 colon perforation. I have had a harder time tolerating it since then. We restarted it this spring but my stomach cannot handle it anymore. I also feel that the plaquenil did not CAUSE my weight loss and GI problems, but rather it just added to them.

Regarding rheumatologists, all of my specialists (colon, gi, cardiologist, oncologist, etc), very often comment that rheumatologists have the hardest job, and that connective tissue diseases are so difficult to diagnose. That sounds so strange, coming from a cancer doctor, or a gastroenologist! I was all set up to go to Mayo Clinic in Minnesota last Sept. That is where the big rheumatology headquarters is. But at the last minute, I was switched and went to the Florida clinic, to the Pulmonary Department.

I am to a point in my life where I have given up trying to find answers and diagnoses about which disease is causing which problems.. or which specialist to call, which treatment to choose! I just want to do my best each day, try to makes smart decisions, and have a little quality.

Sorry to get off subject... I will work on getting my story in, and being more organized! I just automatically have a soft spot in my heart for anyone with any Lupus type disease! Wishing all of you doctors that think outside of the box!

Fozheart: What did they say caused your bowel to perforate? Was it from Ischemic syndrome?




Unxmas: I sure hope maybe the rheumatologist will be able to give me some answers possibly

A few months before I got sick, I would get funny little cramps once in a while on the lower right side. I mentioned it to my family doctor a few times but he dismissed me, implying that perhaps I was depressed! I figured it was just maybe time of the month cramps. One night I had just a little take out italian food, and had sudden pain that sent me to bed. I laid there for 22 hours, in the worst pain that I have ever experienced. I ended up in ER and a cat scan showed bad diverticulitis. (Never had a clue that I had it.) White count spiked along with fever. I spent the first week in the hospital with a very big team of doctors, trying to settle things down with IV antibiotics and NG tube. They could not figure out why I was getting worse- they even sent an infectious disease doctor in. On the 8th day I was crying and begging the nurse to please call the doctor. I had another cat scan and went into emergency surgery because I had perforated in the sigmoid colon. The reason....long term PREDNISONE! I had been up and down on it for quite a while... (6 months or so), because of flaring mixed connective tissue disease, which included several bouts of bronchitis and pleurisy. We usually hear about bad long term side effects such as Cushing syndrome, weakening of bones, immunosupression, etc. This was from actual weakening and thinning of the tissue of the colon itself!

I think I should stop here and finally write my story...

You had a perforated colon from 6m of pred? I have just come off it after a year! And I was on pretty high doses. I think I've been quite lucky not to have any major complications.

fozheart said:

I am to a point in my life where I have given up trying to find answers and diagnoses about which disease is causing which problems.. or which specialist to call, which treatment to choose! I just want to do my best each day, try to makes smart decisions, and have a little quality.

Click to expand...

I reached this point too. I guess it's kind of helpful that I have a couple of diagnoses now, but I'm quite happy being able to say I just have a unique medical condition (actually, a few different unique medical conditions).

With my connective tissue disease I was undiagnosed for years, so I'd had plenty of time to look up many many diseases, trying to find what matched my symptoms. I had so many symptoms, I could never find anything that covered all of them. Most of my symptoms are neurological, even though the closest conditions to what I have are classified as rheumatological. When I did get diagnosed, I realised that even if I had come across the disease I have, I would have dismissed it as a possible match for me because my symptoms were very different from the symptoms it's supposed to cause. The rheumatologist said I had a unique presentation. Then I have at least two other conditions - endocrine and Crohn's - also causing symptoms.

It may be my case is rare, but I have pretty much my own, previously unheard of version of a disease, complicated further by having more than one disease, even though the others aren't all unheard of. My endocrine disorder is still undiagnosed, but I really don't care about getting a diagnosis anymore.

I've learned that it is possible to have an unprecedented disease, where perhaps there are other people who have had the same as you but it's not been officially identified, or perhaps you really are the only one.

Ihurt, I would say to anyone like you who just can't seem to get a diagnosis that it is possible that your illness just simply hasn't occurred before. It can and does happen.

fozheart said:

I had another cat scan and went into emergency surgery because I had perforated in the sigmoid colon. The reason....long term PREDNISONE! I had been up and down on it for quite a while... (6 months or so), because of flaring mixed connective tissue disease, which included several bouts of bronchitis and pleurisy. We usually hear about bad long term side effects such as Cushing syndrome, weakening of bones, immunosupression, etc. This was from actual weakening and thinning of the tissue of the colon itself!

I think I should stop here and finally write my story...

Click to expand...

I've never heard of this and I've read the side effects list of prednisone enough times! How did you doctor work out that prednisone was the cause? Had they heard of it happening to anyone else before? Did they know the mechanism for how pred caused it? Sorry for all the questions, I'm just really interested! I'd love to read your story if you do post it.

A friend of my parents had diverticulitis, I know it wasn't fun for her at all and she seemed to have similar symptoms to Crohn's. Any day out with her between the both of us we'd be stopping at public restrooms a lot! She never let it get her down though and she lived well into her eighties.

Fozheart: Oh wow, that is awful what you went through. I do know that prednisone can cause Lots of health issues so yeah, I can see it causing issues. It is known to thin the skin and make it weak so I am sure it can do that same thing to any internal organ as well( especially if there is already an issue). I know diverticulitis can inflame the colon and that probably made your colon very susceptible and when you were on the prednisone, well that just worsened things it sounds like. In fact my husband has a friend who her husband just went through a major surgery due to diverticulitis. He developed a fistula from an infected abscess in the diverticula. Well it formed a fistula from his intestine to his bladder and he almost perforated. He had to have a resection just to fix it.

I am so sorry for what you went through. Prednisone can really help people, but unfortunately it does do harm after awhile to anyone who takes it. It is not meant to be taken long term.

Unxmas: I do believe I have some sort of autoimmune issue that is causing all my symptoms. I am pretty sure others out there are in the same boat though. There are so many people out there who cannot get a diagnosis to their health problems these days. I just think due to the environment, medications, chemicals, foods we eat, well there are so many changes going on inside our bodies that doctors are just not knowledgeable enough to figure out what is going on, it is too complex. I will admit my issues that I have had are quite unique though. I mean when I first got sick after I had that flu shot, it started where I has severe burning in my throat. Not like a sore throat at all. It was more like I had a second or third degree burn in my throat. It left me for almost 2 years in agony with this constant burning sensation in my throat. I could not speak for almost 2 years due to the pain. I went to mayo clinic and even they were useless. They told me I had something going on for sure but they just did not know. Pretty scary at the time that the Mayo could not even figure it out. But then later I learned that the Mayo is not really any better than other hospitals. Don't get me wrong, they are very good for stuff that is black and white, but hand them something different, you are not going to get much help...

Ihurt, I didn't know you had had a throat problem as well - you poor thing! It sounds like you have as many bits going wrong as I do. Do you also feel like there is just not one part of you that works?!

I believe the cause of my problems is genetic, though of course I can't be completely certain there are not other things involved. The other rheumatological/connective tissue diseases that are comparable to mine are due to defective genes, some get directly inherited from parents, but some are due to gene defects that haven't been passed down a generation, and that's what's happened in my case. No one else in my family has anything similar, I have a gene that became defective of it's own accord. My illness came on just when I very first went into puberty, so I wonder if perhaps hormones may have been a trigger. Now time is a factor, as my illness is progressive and connective tissues become more and more faulty over time. And then there are environmental factors - e.g. the food I eat can worsen my gastroenterological issues, those these factors are minimal and not original causes.

I'm not sure about the value of hospitals that are supposed to be the absolute best, like Mayo. I was sent to what I guess is the UK equivalent of Mayo - two of the consultants I saw there were excellent, and were able to reach a diagnosis that my local consultants couldn't. However, they were absurdly wasteful of their resources - insisting that I have expensive MRIs and things that I'd already had done in my local hospitals. (This was all on the NHS, so it's nothing to do with trying to get more money out of me - I wasn't paying them.) They were incredibly badly organised when it came to arranging tests.

But one doctor I saw there was insane - he was one of the most offensive people I have ever met. I'd travelled from the other side of the country to see him and all he did was attack me, telling me I'd caused my illness with some kind of special psychic powers and that I'd destroyed my body by having surgery because surgery is unnatural. When I tried to object he told me he forbid me to speak - I couldn't make this up - it's the absolute truth. He upset me so much and I was literally in tears and he just carried on. And he was at this prestigious hospital where I'd also met some of the best doctors I've seen.

Some doctors can definitely do much much more harm than good. If you can't get a diagnosis, there are some benefits to giving up on keeping on trying to find one. Sometimes you're safer avoiding doctors and tests. I do hope a rheumatologist can help you, but I think sometimes it can be better to go undiagnosed than to keep going through the stress of more hospitals.

Unxmas: OMG, this is so awful what happened to you with that doctor who told you that you brought on your own illness! How horrible. He should have his medical license revoked! I have been there myself so you are not alone. I had seen a doctor who was a Gastroenterologist ( a professor of medicine, supposedly a top doctor at a Top hospital here) tell me I had health issues because I was a woman and women always make a mountain out of a mole hill!!! I never wanted to slap someone so bad in my life :voodoo:

But yeah, I guess we have a lot in common, I do feel like all my body systems seem effected by whatever it is I have going on too. I mean you are right in one way saying that constantly running after a diagnosis can be stressful in itself. I kind of gave up truly trying to find a "real" cause. I mean I still would like to know what is happening with my gut, but I am not holding my breath that I am going to find out. One thing I am sure of, is that all my health issues I believe are related and caused by the same thing( what that is I may never know)

Ohh... I just accidentally deleted the whole message I was just writing for the last 20 minutes! I am so terrible at this computer! UnXmas, you know how there are a zillion side effects listed for drugs; common, infrequent, etc. If you look under RARE side effects, just about everything under the sun is listed. I just looked on webmd for the heck of it, and there it is... "a rupture in the wall of the stomach or intestine!" If I would have gone in there with the diverticulitis otherwise healthy, it probably would have not happened. It sounds like all three of you have your own unique experiences and nightmares with your connective tissue diseases! It disgusts me too, that each of you have had terrible doctor experiences, and bad luck at these supposedly great hospitals. I too had a wasteful experience last summer at Mayo Clinic in the pulmonary department. All the top honcho did was criticize my doctors who had worked so hard together for months to get me figured out. Just as the two of you said, it was very offensive and rude! And yes..their fancy expensive tests!

Isgs, I am glad that you have not had many complications! Did they have to replace your prednisone with something else? I hope it stays that way for you. UnXmas and Ihurt, I am sorry that you are both going through the mill, and have so much to deal with. I am wondering if any of you are on a steroid sparing agent besides plaquenil for your CTD. I find it very interesting that a lot of them are the same medicines used for IBD. I think you are right, Ihurt.... maybe all of our problems are related to one thing! We just need for our doctors to figure out what that one thing is! I did finally write my story very late last night. I did my best, but it is too long, and probably too much.