Tips on relieving severe pain?

[Ihurt]

I have been having awful cramping pains in my intestines( worse than usual). I had my colonoscopy last month and the GI doc said everything looked fine, and biopsies did not show anything. He is leaning towards a diagnosis of severe IBS. I am not sure about that diagnosis. I mean maybe I do have IBS, but this just does not seem like IBS. My husband also said he does not buy into the IBS. He said he himself had IBS a few years back and he had nowhere near the constant misery I have on a daily basis. I have has these tests so far( MRE small bowel, CT scan, blood works galore, stool tests a year ago, and colonoscopy last month).

As many of you on here probably already know who have read my posts, I have other health issues that complicate everything. I have IC of the bladder and am prone to getting nasty UTI's. Well after my colonoscopy, well my bladder and all became worse. I have had to be on low dose antibiotics( augmentin) for the last 5 months. Well I got a UTI probably due to the trauma and prep from the colonoscopy. I had to up the augmentin to full dose. Ever snice I upped it my intestines are so painful! Thankfully I have not had diarrhea yet( pray I don't get it as that would mean a viscous cycle in terms of the UTI issue). My symptoms are really bad crampy pains in my lower intestines( way worse in the mornings) but still not good in later in the day either. I have that feeling like I will have the runs, you know that horrid crampiness. I just sit with the heating pad and it helps a little. I have been going to the bathroom having a BM once a day in the morning. IT is solid coming out, but seems like when it hits the water it disintegrates really easily.

I am taking A LOT of probitoics ( I normally was taking like 100 billion a day of Renew life 50 billion). I also was taking 2 capsules of florastor as well. Well since upping the antibiotic I have upped the probitoics a bit as well. Now I take 3 caps of the 50 billion and also the flroatsor( 3 caps a day). I also take acidophilis and eat a low fat yogurt daily. I am hoping to prevent C-diff which I do not want to get. I am just in so much pain. I am scared this augmentin has messed me up even worse. I mean what if it causes me to get full blown crohns? I have read on here of people who have said their crohns was caused by antibiotics.

Is there anything I can take to help with this crampiness. My doctor gave me something called donnatol a few months ago for when I was having all the intestinal pains. I took like 1 teaspoon and it helped a bit, but then it constipated the hell out of me. I mean just from taking 1 teaspoon, it constipated me! I must be super sensitive. Any ideas of what can help with the crampiness that WONT cause diarrhea or constipation as a side effect?? I am miserable right now. Initially the doctor wanted me to take the higher dose of augmentin for 10 days, but since I am having all the gut pain, she said maybe just take it for 5 to 7 days and then go back down to taking just the low dose preventative. I sure hope this calms down as I am miserable. Any suggestions???

I also have developed itchiness in the anal area too now. Porbably yeast or something, I am not sure. It itches bad after I have a BM. Then when I shower to clean off, it burns like crazy. I have also been dealing with vaginal issues to ever since the colonoscopy. ughh, when it rains it pours!

 

[SarahBear]

Just thinking, Ihurt... have you had blood tests to check for inflammation? If so, what were the results? Have you had a Prometheus blood test?

I think the problem is that you're unable to do further testing to thoroughly check your small intestine. When I went through testing, I was told everything was normal - up until the very last test, the pill cam, which showed inflammation and ulceration throughout my entire small intestine. Blood tests might help you since that test can't be done.

Where exactly is your stomach pain? Is it down low, sort of between your hip bones?

 

[Ihurt]

Hi Sarah,

Well, I have had blood tests. I had the C-reactive protein test about three months ago and it was normal. Though for me, these tests I really could not go by. I mean put it this way, I have had elevated Sed-rates and C-reactive protein levels on and off for the last 9 years since getting sick with all my health issues( even before I had any gut problems). Ironically since my intestines have gotten bad, my C-reactive protein level have been normal the last two times they were checked. My gastro doc also checked my Sed-rate when I was having issues back a year and half ago and it was normal. I also had the fecal calprotectin level done awhile back and it was normal too. I am not sure what to think though.

I have not done the Prometheus test. I believe I did ask my gastro doc about it last year sometime when I first was having issues and he said it was not a very reliable test to go by. I think he said that it can come back positive in a person and they will never have crohns, and it can also come back negative and the person can still get crohns. He said it would just cause added extra unnecessary worry so I did not press him about it.

My pain right now is in my lower intestines, the whole lower belly. I mean I feel fine in my upper gut( no nausea or actual stomach pain). IT seems to be all in my lower gut from what I can tell.

Wow, so you went through the whole MRE of the small bowel and it did not show the ulcers in your small bowel? I was told the MRE was one of the best tests in being able to diagnose small bowel issues which is why I agreed to have it done. My doctor said it was the better test to see the small bowel. Though I have heard of the pill cam being real good too as it can actually take pictures on the inside. I wish I had been a bit more on the ball, I would have asked for that damn pill cam right after I did the colonoscopy! But honestly, I am not sure my gastro doc would have went for it, or if my insurance company would have agreed either. I mean grant it, I am glad my colonoscopy did not show anything, that is good, but in the same respect, I think every test that I have that does not show much, well my gastro is more and more convinced this is all IBS and he does not seem to want to go any further with this at this point. I mean understandably he does not want to put me through anymore due to all my other health issues that have been messed up by this too.

I am at a loss. I just want some pain relief that wont have such side effects that mess something else up. I don't know what to do. I see the GI doc this Wednesday so I am plan on trying to talk to him and see if he has any other tricks up his sleeve for me to try.... Thanks for replying, I feel at such a loss.

Just thinking, Ihurt... have you had blood tests to check for inflammation? If so, what were the results? Have you had a Prometheus blood test?

I think the problem is that you're unable to do further testing to thoroughly check your small intestine. When I went through testing, I was told everything was normal - up until the very last test, the pill cam, which showed inflammation and ulceration throughout my entire small intestine. Blood tests might help you since that test can't be done.

Where exactly is your stomach pain? Is it down low, sort of between your hip bones?

 

[SarahBear]

Blood tests are certainly not the most reliable, but since you're at a stand-still with your testing, a Prometheus test might help give you a little more to go off of. They're definitely not 100% accurate, but they aren't completely off base, either (or else, no one would do them).

I ask about the location of your pain because I feel my Crohn's pain low, between my hip bones. It's the same area you would usually feel menstrual cramps. As mine was active in my small intestine, I figure if you feel pain in the same area, your problems might be coming from your small intestine as well. However, all we could really do is guess and hypothesize, as we all feel these things differently.

I had a colonoscopy, endoscopy, and a barium x-ray. I don't remember for certain what else was done, as the Pred I took once I was diagnosed caused some psychological problems that messed with my memory. None of these tests showed anything. Actually, the colonoscopy showed "mild chronic inflammation," but they didn't diagnose (or even mention it) until the pill cam was done. I don't believe I had an MRE. Unfortunately, it can miss things - the pill cam is the best way to see the small intestine, but even it can still miss things because there is only a camera on one end of it.

If the Donnatal didn't work for you, you could try Hyoscyamine or Bentyl. They're anti-spasmodic medications, usually used to calm the intestinal spams that characterize IBS. Some people with IBD find them to relieve their pain, as well. Hyoscyamine comes in a dissolvable tablet and Bentyl is available in capsule or liquid form. Hyoscyamine is in Donnatal, but it's mixed with other things so it may not cause you the same issues on it's own.

 

[kiny]

Wouldn't worry too much about the augmentin, it's not going to give you crohn's disease, and it's not going to make crohn's disease any worse or any better once you take it. It's a very mild anitbiotic and your own gut flora is extremely resilient, it always comes back, it builds up resistance to augmentin very fast. I hope your other issues get resolves, but don't worry too much, will be fine.

 

[Ihurt]

Thanks Sarah, and Kiny,

Sarah: Thanks for the tips and support. I have used bentyl before too, and same thing, it constipated me. I guess I would just have to try it again and see how it goes. I have hyoscomine drops here too that my regular doctor gave me while back. I may try them and see. In regards to tests, it is so frustrating. I am going to ask my gastro doc about the Prometheus test again when I see him Wednesday and see what he says. At least it is one avenue I can go down.

Kiny: Thanks for the support and reassurance. I Hate being on the antibiotics. I am certain my gut is the mess it is in from being on them so long. I mean they are the blessing and the curse! They help out a lot, but they also hurt a lot as well in terms of side effects.

 

[Cozmo]

Hello ihurt, I don't mean to hijack your thread at all but I've recently being experiencing some similar problems. I've spoken with my Gastro yesterday and she is considering something more than just crohns at bay, and has mentioned the possibility of urinary/bladder problems and a possible urologist referral. It's all mixed up with a lot of other current stuff as I'm just trialing out Aza for the first 2 weeks, not only experiencing rashes up my arms but back, hip and groin pain. The Gastro has called me in today, but has definitely suggested that the pains I'm experiencing are more than just crohns. I'm inclined to agree with her as I've had a blocked semen duct ever since before diagnosis 6 months ago. So just trying tom persevere with the pain again, I'm up to 20mg Pred twice a day at the moment and 8 x Co-Dydramol just to try and get me through. Previously, since diagnosis I'd managed to hold it on 15mg pred once a day and no painkillers so feeling a little disappointed with the current decline in health and pain. It hurts more after eating, so things are as bad or worse than pre-diagnosis at the moment, I've managed two slices of toast in the last two days.

Thanks for all your posts on this forum, I find it so helpful to not feel alone with this and to get some identification with people to. I really hope you are able to get yourself sorted out and in to a place of good health.

Thanks again

 

[Ihurt]

Hey Cozmo,

No problem at all, hey that is what this board is for, to share our experiences. I think it really helps to talk to others who can identify with each other and with the certain issues they are having.

I am sorry you are having urinary issues, ughh it sucks. I mean with my urinary issues, it is my bladder and I get severe pain in the bladder from the IC( interstitial cystitis). I have had a few Urological workups already. When they looked inside my bladder the first time I was told it was severely inflamed inside. That is when they diagnosed me with having IC. I suffered 3 years relentlessly with awful pain ( I mean probably the worst pain I have ever experienced). I have quite a few health issues but I gotta say, nothing is more painful than bladder pain in my opinion. Oddly, after suffering for 3 years, I got a real nasty infection and was put on an antibiotic for like 6 weeks and then low dose long term. That REALLY helped my bladder all around. So I really think my IC is caused by a bacteria of some sort. Only bad thing is that the one antibiotic they had me on stopped working after 4 years. Now they have me on a different one and not sure how long it is going to work. I mean I know it is not reasonable to stay on antibiotic's all the time, eventually they will stop working. Not sure what I am going to do . I mean the severe pain makes me suicidal actually it is so bad.

I hope they can figure out your issue. Did they say what they thought was causing the blocked semen duct? Sounds uncomfortable. Do you have any pain when you urinate or is it difficult to pee?

I feel for you, I honestly do. No one can really understand how painful issues of the urogenital tract can be unless they have experienced it. Just awful. I hope you can get some help and relief soon!!

Hello ihurt, I don't mean to hijack your thread at all but I've recently being experiencing some similar problems. I've spoken with my Gastro yesterday and she is considering something more than just crohns at bay, and has mentioned the possibility of urinary/bladder problems and a possible urologist referral. It's all mixed up with a lot of other current stuff as I'm just trialing out Aza for the first 2 weeks, not only experiencing rashes up my arms but back, hip and groin pain. The Gastro has called me in today, but has definitely suggested that the pains I'm experiencing are more than just crohns. I'm inclined to agree with her as I've had a blocked semen duct ever since before diagnosis 6 months ago. So just trying tom persevere with the pain again, I'm up to 20mg Pred twice a day at the moment and 8 x Co-Dydramol just to try and get me through. Previously, since diagnosis I'd managed to hold it on 15mg pred once a day and no painkillers so feeling a little disappointed with the current decline in health and pain. It hurts more after eating, so things are as bad or worse than pre-diagnosis at the moment, I've managed two slices of toast in the last two days.

Thanks for all your posts on this forum, I find it so helpful to not feel alone with this and to get some identification with people to. I really hope you are able to get yourself sorted out and in to a place of good health.

Thanks again

 

[Twiggy930]

The FODMAP diet has been shown to be successful in relieving IBS symptoms. It might be worth a try. My son has also tried Iberogast which is a herbal remedy that has also been shown to be effective at reducing IBS pain. Not to sure I buy into either of them but when you are desperate, you are desperate, and trying something always makes me feel better than doing nothing.

FWIW. My son was diagnosed with Crohn's and then after all his labs started to come back normal and his fecal calprotectin came back normal (3 different times) he still had frequent, debilitating abdominal pain. I know all too well how devastating it is to have the tests come back negative but still have horrible symptoms.

:hang: And keep pushing them to find out what is really going on.

 

[hedge]

Sitting with a heat pad or taking a hot bath. Both have been very successful for me

 

[mccindy]

Hot baths have worked well for me too. A good 20-30 minute soak in a very hot tub gives substantial relief.

 

[Ihurt]

Thanks for the tips. I use a heating pad all day! It is the one thing that does help me a bit. I unfortunately cannot soak in the tub. Way too risky in terms of getting a UTI. I was told long ago I cannot take baths anymore because of that , it sucks because I miss my baths!

 

[mccindy]

Oh, that does suck! I didn't think about your bladder issues when I mentioned the bath. I'm not a big bath person but it is nice to be able to get in and soak for a bit. How unfortunate that you can't take a bath at all.

 

[strawberrys78]

Heating pads definitely help me sometimes! Probably not during my flares in which I get the intense excruciating pain, but when my stomach is a little uneasy. My pain is also in my lower stomach, below my belly button. I know how bad it is. Sometimes I feel like I am going to die. I know some people with IBS, and they normally just have to use the washroom after eating some trigger foods. However, none of them have pain similar to me and I was dx with Crohn's disease! I hope you get some answers soon. It is certainly discouraging and frustrating!!

 

[Lulubelle]

So sorry you are having such awful pain!

I have a stricture that can cause excruciating pain, and because my doc does not prescribe narcotic pain medication with Crohn's, I have taken Bentyl. Bentyl helps sometimes, and other times I think I get so drowsy, I am able to relax a little and feel the pain less intensely. Like you, though, I tend to get very constipated, which is THE WORST thing for me.

When things get to the point where I need SOME pain relief, I do take the Bentyl and eat 4-6 prunes before bed. The next night, depending on "results" I do the same, or adjust the prunes. Also, I add LOTS MORE liquid and keep drinking as much fluid as possible throughout the day. Also, I find a heating pad helps a great deal, but it is important to NOT fall asleep with the heating pad! Another thing that helps is a microwavable bag filled with beans called a "Bed Buddy." (It is kind of long, like a tube sock, filled with some kind of beans and rope on either side. ) I found mine at a drug store. I am very careful to place it NEAR not ON where it hurts. Sometimes, when I have been ill for a long time, my back hurts, and I use it there, or on my neck. Sometimes I have been known to sleep with this Bed Buddy for weeks on end! It seems to relax me...and I do think my pain gets out of hand when I start anticipating THE NEXT pain.

When I have been to the point where I am rolling around on the floor in agony and afraid that I won't die soon enough, that is when "self-treatment" time is over. I call the doc. A couple of times, he has advised me to get to the hospital, and have the hospital call him when I arrived. Twice now, I waited it out, thinking if the pain went up one "notch" I would go, but instead, the pain stayed the same, and I waited it out. Given what I know now, I don't think I would do that again. :eek2:

I hope you read something on the this forum that will help you today. I am so sorry you are going through this. anda-wave-t:

 

[Amy2]

As soon as you said you can't take baths anymore...I started thinking that there must be special waterproof undies you could wear, or possibly make some? Shouldn't be impossible to keep one area dry, right?