Not sure what is going on??

[Ihurt]

Hi all.

I have been having issues with my intestines for over a year now. My main symptoms are Crampy pains in my intestines, and soreness throughout the whole intestines, even when you press on the abdomin it hurts. I have normal formed stool for the most part, sometmes it is soft and I also have mucus at times. I usually have a BM every day or evey other day. I feel soooo much worse after I have a BM. I get really crampy and sore inside throughout my intestines.
My gastro doc seems to think it is IBS. I also have other health issues as well ( interstitial cysttits, chronic UTI's, fibromyalgia, possible autoimmune issues, chemcial senstivities). My gastro doc did blood recently to check my sed rate and it was normal. Note, I have had elevated sed rates and C-reactive protein off and on for the last 9 years.
Anyhow, I of course am concerned that this is crohns disease. My gastro did not feel it was nessasary to do a colonoscopy, he said there are risks invloved and because of all my other health issues he did not feel I should go through it at this point. My whole digestive tract is a mess. I have pain in my whole intestinal area as well as upper gut and stomach. My gastro doc wants me to take elavil and see if it helps.
I am not sure what to do. I really would hate to go through a colonoscopy, you have to have induced diarhea for this test and for me this is no good. I get severe urinary infections and cannot get diarhea. Diareaha usually results in a UTI for me. This is one reason the gastro did not want to do the colonoscopy. I am allergic or have severe reactions to most antibitoics so it is bad when I get infections. I have had to be on a low dose antibitoic( keflex) for the last 4 years to help keep the UTI's away. I still have to be very careful though. Anyhow, I know that crohns left untreated is no good, you eventually end up with surgeries upon surgeries and tons of damage. I also cannot afford a bunch of tests. Our out of pocket deductible is $2,500 for each family member. I would have to come up with this money to have any tests.
Sorry this post is so long. What are the common symptoms of crohns? Why does my GI not seem to think I have crohns, but rather IBS? He is not a bad doctor at all, in fact he is chief of gasterenterology at a very good hospital where I live( Chicago IL). Anyhow, what are your thoughts???? Any replies are greatly appreciated.

 

[Trysha]

Hello Ihurt
Sorry you are having problems right now and hope a solution can soon be found for you.
It sounds as if you are in capable hands with your GI.
Elavil can be helpful with some kinds of abdominal pain and you may find that this could help you.
Why not give it a try, it is not an expensive drug.
I am sure your GI will continue to monitor you in the coming months and would likely intervene if you were not being helped by the drug.
Has anyone reviewed the keflex treatment. Four years is a long time to be on a broad spectrum antibiotic.
Wish I could help you more
Feel better soon
Hugs and best wishes
Trysha

 

[Ihurt]

Thank you Trysha for your reply. Believe me, I do not like being on this antibiotic, but my doctor wants me to stay on it due to the chronic urinary infections I was getting. I went to three urologists and they all said that some women are just prone to getting the infections. i also have the IC which makes infections easy to get. I also take large doses of probiotics daily as well to keep my gut flora intact. I often wonder if it is the low dose keflex that could be causing the gut issues, but the gastro doc is not convinced of that, he thinks I would have had issues way before now if it were the keflex. I really do not know. I also take zyrtec daily as well.

I may have to try the elavil, just I worry about the side effects since I am so sensitive. Anyhow, thanks for replying, I appreciate it.

 

[Ihurt]

Symptoms of crohns???

I was just wondering what are the common symtpoms of crohns?? I have been suffering for a little over a year. It got really bad after I had a tummy flu a year ago. I always am in pain. Some days way worse than others. My gastro doc thinks IBS. The only thing is, everyone I personally know with IBS does not suffer like I do with the pain. I always thought that with IBS when you change your diet, you will feel better. I have been on a very lean and bland diet for years. I have also been on a gluten free diet for over 5 years. So I am having pain and issues even on the bland diet.

I only had so far one bout of diareah a couple months back and at the time I was on my menstrual cycle and that always makes things worse. Another thing is , I always heard that with IBS, the person feels relief after a bowel movement. For me I always feel WAY worse after I have a BM. Then I have crampy sick feeling through out my intestines all day. My stools are usually formed but on the softer side and I use to go once a day, now it is usually once every other day. I have always have pain and crampiness everyday, some days way worse than others. I mean alot of times I have to sit with the heating pad all day I am in so much pain. I have tried librax and that did not help, kind of made me feel worse. I am now trying the bentyl.

I have not had any recent tests except for an abdominal unltrasound which was normal. My gastro doc did not feel I should do a colonoscopy at this point. He is certain I have IBS. Can IBS really cause this much discomfort and bad pain all the time?? I also suffer from upper gut issues as well. I have pain throughout my whole digestive tract. I know I have H-pylori, I will not treat it as I am allergic to all the antibiotics they use to treat this. Besides, only a very small number of people have success killing it with the meds, it almost always comes back. Not sure if this h-pylori is causing some of the upper gut issues or not though.

So these are my symptoms: crampy, sore feelings througout all intestines, feeling worse after a BM, always having that "feeling" I have to have a BM, nausea at times, bloating, and bad pain, as well as mucus in stool at times.

What are the symtpoms of crohns disease? I mean how does a gastro differenciate between the two diseases? I wonder why my gastro seems sure I have IBS, I mean is there significant differences between the two??? Thanks in advance for any replies.

 

[StarGirrrrl]

Hi ihurt, I am sorry to hear of your troubles

I have merged your threads because the subjects are quite similar, and hopefully someone will be along soon to help- i'm not really an expert when it comes to bacteria issues, and as your GI seems to have good reason not to do a colonoscopy, I am stuck as to what I can recommend.

 

[nikimazur]

IBS can cause debilitating pain along with most of the symptoms normally associated with Crohns. Has your doctor suggested any treatment for IBS? My doctor prescribed Elavil, a mild anti anxiety/ antidepressant med that was known to help with IBS, and then Lotronex, another IBS med. it wasn't until they failed that she had me do a repeat colonoscopy and did further tests. Crohns is a big diagnosis, both to live with and insurance company wise. I know you want answers, but I would first exhaust IBS meds and diagnosis...the meds have much fewer side effects then any of the crohns drugs, and then go from there

 

[Ihurt]

Thanks for the replies,

Nikimazur: Thanks for the reply, I have tried the med librax and this did not help really, I actually felt a bit worse on it. I am now trying bentyl. It helps slightly. I am taking one teaspoon a day. I tend to be very sensitive to meds, I get bad reactions so I have to be careful. My gastro doc did give me elavil, I have not taken it yet, but that is my next step. I am going to see the gastro doc on Thursday to update him. I am likely going to start the elavil as well. My concern is that what if I do indeed have crohns and I am letting it go untreated, wont this result in major damage right away and require surgery?? They say that almost all people with crohns will have to have surgery at some point. It is just kind of concerning.

I have heard that IBS can be debilitating, just I have known quite a few people with IBS and they just did not seem as sick as I am. And their pain was not constant and they felt better after they have a BM. For me, I feel soooo much worse after I go. I do not have pain while I am going, my pain if after I am done, then my intestines are sooo sore and crampy and icky feeling. They have that IBS rome criteria that IBS'ers usually fall in. You have to have at least three of the symptoms. I do not. My symptoms are different and not the typical constipation or diareha or both alternating, as well as feeling relief after a BM.

My regular primary care doc said that in her opinion IBS can affect each person differently and symptoms can be different, you dont have to have all the symtpoms that fall under the rome criteria for IBS. I just do not know.
Anyhow, I guess I am just worried since I just do not know what I have and like I said , in the event that it is crohns, with me not treating it, will I develop damage very quickly to require surgery??? This is pretty scary stuff. I already have so many other health issues, I do not need another

 

[Gculk]

With all of the allergies you have it would be worth considering a significant number of food intolerances. Have you tried an elimination diet? Take everything out of your diet except something safe like pototoes or rice. If that helps, then gradually bring things back in to see what causes issues. If it doesn't help, well yer just screwed. :lol2:

Also, my -non medical- opinion is get more testing. MRI/Small bowel followthrough/ct scan can reveal issues. Small bowel followthrough would be the one to give you results as you're having formed stool so significant colitis is unlikely imo. The raised crp/sed rates definitely indicate something might be on the go, but that could be as well marked down to the already diagnosed conditions.

A promising fact is that you still have formed bowel movements (not constipated are they? Just regular). Could just be IBS, but it could go either way so you need to get more investigations done.

 

[allieinwonder]

Hello ihurt, and welcome to the club. I'm sorry that all of this brought you here!

Based on your symptoms, it sounds like it could very well be IBS. IBS causes your intestines to spasm, causing those crampy pains. There are symptoms though that IBS does not create...blood in stool, diarrhea in the middle of the night, etc. Fibro and IBS also go hand in hand.

Have you tried any meds for IBS? There is one out there for the spasms, and it might help your pain.

If you want to be sure it isn't crohns, you will probably have to have a colonoscopy. Its not a bad test, the prep is actually the worst part.

Good luck with whatever you decide! I feel for you, I was diagnosed with IBS at 17, two years after my symptoms started, and no tests were done, but I was given medication (That didn't work). It took a long road of crohn's tests, and finally a rheumy, to figure out that it is either IBS being caused by an inflammatory autoimmune condition or just the inflammatory condition itself. I am now almost 23. Patience is key with chronic conditions!

 

[Ihurt]

Thanks for the reply. I am going to see the gastro doc Thursday and I am definitely going to ask him if I can do the small bowel follow through as well as maybe the upper endoscopy. I am also having nausea and bloat and pain in the upper stomach and gut. I guess I will go from there and just see what he says.

I have been on so many diets, my diet is really bland, has been for a long time. I mainly eat roasted chicken, potataoes, brown rice, and carrots cooked soft or green beans, rice cakes, I mean I do not eat anything greasy or fried and nothing spicy. I am also gluten free, have been for over 5 years now. I was diagnosed with a neuropathic dysmotility of the small intestines 7 years ago. My symptoms back then were feeling full after only a few bites of food and severe bloat. When I went on the gluten free diet that helped immensely. My symptoms now are a bit different in the upper gut though, I have the bloat but I also have pain and nausea and burning now as well as horrid belching. I also have the pain in the lower intestines and cramping. My stools are usually formed and mostly soft, but there are times when they are soft mixed with little hard turds( sorry, that sounds gross). But for the most part, they are formed and soft. I just do not know. I guess I will see what the doc says Thursday.

With all of the allergies you have it would be worth considering a significant number of food intolerances. Have you tried an elimination diet? Take everything out of your diet except something safe like pototoes or rice. If that helps, then gradually bring things back in to see what causes issues. If it doesn't help, well yer just screwed. :lol2:

Also, my -non medical- opinion is get more testing. MRI/Small bowel followthrough/ct scan can reveal issues. Small bowel followthrough would be the one to give you results as you're having formed stool so significant colitis is unlikely imo. The raised crp/sed rates definitely indicate something might be on the go, but that could be as well marked down to the already diagnosed conditions.

A promising fact is that you still have formed bowel movements (not constipated are they? Just regular). Could just be IBS, but it could go either way so you need to get more investigations done.

 

[Ihurt]

Thanks for the reply. I am going to see the gastro on Thursday. I also went through that whole road with the rheumy docs. I was also dx with an undifferenciated connective tissue disease. I just think they have no clue what is wrong with me. I was even told I likely had lyme disease( though I do not ever remember being bit by a tic nor did I have that bulls eye rash), so I am not convinced of that.

I also was dx with a neuropathic dysmotility of the small intestines back years ago. My symptoms then were severe bloat and feeling full after only a few bites. I went Gluten free and I seemed to feel alot better. Now though I am having new upper gut issues. I am having the bloat, but also nausea, and pain which I did not have back then. I am for sure going to ask the gastro to do an upper endoscopy and also maybe the small bowel follow through tests where you drink all that radio active crap. That is at least safer that a CT scan. I do not want to be exposed to the radiation of a CT if I do not have to. I may end up having a colonoscopy, but I am leary of it as I have also interstitial cystitis and chronic UTI's. YOu have to have induced diareha to clean out the intestines to have the colonoscopy. When I get diareha, I always get a urinary infection no matter how clean or careful I am.Last year I got the stomach flu and had the runs and I ended up with a infection. My doc said I am just very vunerable to them likely because I have IC. The bad thing is that I am already on a low dose antibitoic,have been for over 4 years to keep the infections at bay. I am allergic to most ALL of the antibiotic out there so If I get any type of infections I am in trouble. My reactions are not really all allergic, but more so severe adverse reactions. My allergist says he can help when it comes to allergic reactions, but adverse reactions there is no help for, you just have to avoid that drug. So that is where I am at.

Thanks for the reply, this is quite frustrating, thanks for the support.

Hello ihurt, and welcome to the club. I'm sorry that all of this brought you here!

Based on your symptoms, it sounds like it could very well be IBS. IBS causes your intestines to spasm, causing those crampy pains. There are symptoms though that IBS does not create...blood in stool, diarrhea in the middle of the night, etc. Fibro and IBS also go hand in hand.

Have you tried any meds for IBS? There is one out there for the spasms, and it might help your pain.

If you want to be sure it isn't crohns, you will probably have to have a colonoscopy. Its not a bad test, the prep is actually the worst part.

Good luck with whatever you decide! I feel for you, I was diagnosed with IBS at 17, two years after my symptoms started, and no tests were done, but I was given medication (That didn't work). It took a long road of crohn's tests, and finally a rheumy, to figure out that it is either IBS being caused by an inflammatory autoimmune condition or just the inflammatory condition itself. I am now almost 23. Patience is key with chronic conditions!

 

[Keepingfaith]

Welcome! I'm so sorry you are having a lot of issues with your health! You have come to the right place for support! Your GI sounds like he's doing the normal work up. For good reason, GI's don't just hand out colonoscopies. They usually do blood tests, xrays, SBFT, CT's & other tests that are less invasive first.

Everyone with Crohn's is different & you could very well have IBS. I have a cousin with IC & Lyme's & her bowel movements, symptoms sound very much like yours. She has IBS & the antibiotics she's on has really messed up her gut flora & I think that's what 'caused' her IBS.


My symptoms of Crohn's are: 85+ pound weight loss in less than a year, decreased appetite, bloody diarhhea, brown discharge in urine, intense intestinal pain, vomitting, nausea, fatigue, extreme arthritis, mouth ulcers & rectum swelling so bad doctors couldn't even give me a rectal exam. Other people can have anemia, mild stomach pain & have a mild case of Crohn's. This is why this disease is SO hard to diagnose.

 

[em6263]

Hi there,

I'm so sorry to hear that you've been so sick for so long. Just a quick thought - have you been tested for c diff? People often pick it up when broad-spectrum antibiotics destroy competing intestinal flora. It can seriously wreak havoc on your gut. C diff tends to cause severe diarrhea, and it sounds like your issues are more related to constipation, so this is probably a long shot. But maybe worth looking into?

I hope the docs figure this out for you, and that things start getting better soon.

Em

 

[Ihurt]

Thanks for the replies. I was testes for C-diff twice and it was negative. I actually do not really have constipation per say. I go sometimes every other day but when I do it is usually pretty soft. My biggest issue right now is Bad pain and cramping all the time, especially after I eat anything. I am also having horrid upper gut issues as well( burning, pain, bloating, mild nausea, and just icky feeling) maybe it is gastritis or an ulcer, I am not sure. I took some pepcid and it helped with the burning some. But my lower intestines are so crampy. I have been taking the bentyl but it is only helping to just take the edge off and it does not last long at all at that. Ughh, well thank God I see the gastro tomorrow. Will see what he says.