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Crohn's Disease Forum » Your Story » My story with Crohn's and Lower Back Pain


02-27-2017, 04:03 PM   #1
StraightShotSS
 
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My story with Crohn's and Lower Back Pain

Hi there! My name is Jessie and I'm a 22 year old male who has recently been diagnosed with Crohn's. I'm currently taking prednisone and tapering back 5mg a week, and just had my second Remicade injection.

I understand from what I've read elsewhere that when most people get a Flare it causes diarrhoea or constipation, and abdominal discomfort or pain. I wish mine was so minor.

When I get a Flare, whatever I ate fails to pass through one a the 3 strictures in my small intestine, causing it to become inflamed and shut so tight that for the next 8-12 hours only liquids can get through. It feels like every 2-10 minutes the food tries to pass that area again, causing me to be in pain for the next 30 seconds as that area painfully swells up, then I can feel it back off and the pain and swelling subside until I go through it all over again in few minutes. This also makes my entire stomach and abdominal area to look and feel really bloated, which puts a large strain on my lower back, which is my real issue.

I get really bad lower back pain during a flare, ranging anywhere from a 5/10 to 7/10 normally, and in really bad (albeit rare, only happened twice so far) cases can go all the way to 10/10, leaving me in tears and trying anything to make the pain stop. The only pain medication I have are T3, to take as needed, and while these help my back if I take them preemptively, they take up to an hour to take effect, and only bring my back pain down about 3 levels once they do. I'm going to see my family doctor this week and was wondering if I should ask about narcotics for when my back gets really bad.

And has anyone else heard of a case like mine before? As long as I avoid foods that trigger a flare long enough for food to get through my system I have normal, regular bowel movements, but when I flare up nothing gets that far so my next movement is delayed by a full day usually. I just don't know what to do about the back pain, and it's definitely my worst problem.
02-27-2017, 04:56 PM   #2
cmack
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Hi Jessie,

Welcome my fellow British Columbian. I'm sorry to hear about your pain. I'm a 38 yr old guy. I tried a chiropractor and she really helped me out when I was having severe back pain. You might need stronger meds, but I doubt they will be prescribed long term. The opiates end up becoming less and less useful the more we take them. As our pain receptors are blocked, the body makes extra ones in response(so more pain) it's a vicious cycle. I take amitriptyline 40-50 mg an hour before bed and that helps ease me into a good night's sleep as it helps block nerve pain. It isn't addictive. If you took it during the day you would be very sleepy, so It is only useful at night for me(a good night's sleep is always nice though). I have a few tricks that help me. Just pm me if you want to ask any private questions.


Welcome again, give me a shout on here or a pm any time bud,

cmack
02-27-2017, 05:52 PM   #3
StraightShotSS
 
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Thanks for the response. I'll probably look into a chiropractor. The only tricks I know for my back are icing on and off or laying on my back on an exercise mat with a pillow is really comfortable, but both these methods only work if my back is less then 8/10 (which is thankfully about 90%) of my cases. I don't have any way to deal with the higher pain aside from taking a T3 and suffering for an hour, and I'm thankful for any tips tricks or advice you have that might help at all!
02-27-2017, 05:57 PM   #4
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I use a foam roller and it helps. It is kind of like a massage. They are cheap, I got mine off of Amazon for 12 bucks or something.


Your new teammate,

cmack
02-27-2017, 06:33 PM   #5
StraightShotSS
 
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I use a foam roller and it helps. It is kind of like a massage. They are cheap, I got mine off of Amazon for 12 bucks or something.


Your new teammate,

cmack

I'll give that a try sometime, thanks cmack!
02-27-2017, 06:34 PM   #6
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You got it bro!
02-27-2017, 06:38 PM   #7
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Jessie,

Do you drive a Chevelle or a Nova? I was wondering cause it sounds by your name you may even have nitrous. I'm a gearhead and I love musclecars.
02-27-2017, 07:11 PM   #8
Maya142
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get really bad lower back pain during a flare, ranging anywhere from a 5/10 to 7/10 normally, and in really bad (albeit rare, only happened twice so far) cases can go all the way to 10/10, leaving me in tears and trying anything to make the pain stop. The only pain medication I have are T3, to take as needed, and while these help my back if I take them preemptively, they take up to an hour to take effect, and only bring my back pain down about 3 levels once they do. I'm going to see my family doctor this week and was wondering if I should ask about narcotics for when my back gets really bad.
Do you have any other symptoms with the back pain? Stiffness? Pain that gets better with movement and worse with rest? Pain in other joints?

There is a type of inflammatory arthritis that is associated with IBD which causes back pain and affects the spine - spondyloarthritis. It might be worth seeing a rheumatologist.

I would also not see a chiropractor till you have ruled out arthritis - chiropractors can cause a lot of damage if you have inflammatory arthritis. Physical therapy is much safer!

Ice and heat may help a little bit while you're trying to figure out what the back pain is.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
02-27-2017, 07:20 PM   #9
cmack
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Each unto their own. A good chiropractor will fully assess you and ask a lot of questions before any adjustments are made.
02-27-2017, 07:24 PM   #10
cmack
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Massage can help too.
02-27-2017, 07:31 PM   #11
DougUte
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Hi there! My name is Jessie and I'm a 22 year old male who has recently been diagnosed with Crohn's. I'm currently taking prednisone and tapering back 5mg a week, and just had my second Remicade injection.

I understand from what I've read elsewhere that when most people get a Flare it causes diarrhoea or constipation, and abdominal discomfort or pain. I wish mine was so minor.

When I get a Flare, whatever I ate fails to pass through one a the 3 strictures in my small intestine, causing it to become inflamed and shut so tight that for the next 8-12 hours only liquids can get through. It feels like every 2-10 minutes the food tries to pass that area again, causing me to be in pain for the next 30 seconds as that area painfully swells up, then I can feel it back off and the pain and swelling subside until I go through it all over again in few minutes. This also makes my entire stomach and abdominal area to look and feel really bloated, which puts a large strain on my lower back, which is my real issue.

I get really bad lower back pain during a flare, ranging anywhere from a 5/10 to 7/10 normally, and in really bad (albeit rare, only happened twice so far) cases can go all the way to 10/10, leaving me in tears and trying anything to make the pain stop. The only pain medication I have are T3, to take as needed, and while these help my back if I take them preemptively, they take up to an hour to take effect, and only bring my back pain down about 3 levels once they do. I'm going to see my family doctor this week and was wondering if I should ask about narcotics for when my back gets really bad.

And has anyone else heard of a case like mine before? As long as I avoid foods that trigger a flare long enough for food to get through my system I have normal, regular bowel movements, but when I flare up nothing gets that far so my next movement is delayed by a full day usually. I just don't know what to do about the back pain, and it's definitely my worst problem.
Hi SS.

Unfortunately I have heard of a case like yours. It is mine. I really feel for you. My guts are having sympathy pains.

The pain from an obstruction is extremely intense. The pain will put you on the floor, cause you to roll up in ball, and comes in waves. This was the absolute worst pain I ever felt in my life. It is 10/10. The pains hit more in the evening. What was causing mine was a Crohn's mass. The obstruction was very large and I had surgery to remove the mass. The mass consisted of 3 feet of my small intestine and 6 inches of my colon. My surgeon told me the passageway was only the diameter of a pea. After my surgery, I was able to enter the IBD world of Diahreah being my worst symptom. Even then I have had to prevent strictures from coming back by taking heavy duty biologic meds such as Humira and now Entyvio.

The pain would come from my lower right abdomen and would put a lot of pressure on my lower back, due to rolling up in a ball. I remember the back pain very well. But I have not had any pain even close to what I had in the flares before I had surgery. The surgery was by far the best thing I ever did to get the Crohn's under control. In fact, after surgery I did not need the pain medication they gave me. I only pushed the button for morphine 1 time. The post op pain was not as bad as the pain from the obstruction. Honestly the surgery was the best thing I could of done.

Let me know how things proceed for you. I'll be thinking of you.
__________________
Surgery Oct 12, 2010

Crohns Medicines:
Started Humira June 22nd, 2011
Increased to weekly injections on November 1st, 2016
Due to the insurance company, Humira ended on January 31, 2017.
Started Entyvio February 9th, 2017
Loperamide 3 capsules twice a day
Vitamin B6, B12, Folic Acid
Vitamin D3 10000 I.U.
Nature Made Multivitamin
02-27-2017, 07:43 PM   #12
cmack
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Good on you Doug!

Those pains are terrible and make you want to cry and just lie down and turtle. I feel for all of you that have ever suffered through this pain. Remember that you are not alone. We have each other. Even if nothing else... we can understand the struggle in one way or another.
02-27-2017, 08:17 PM   #13
StraightShotSS
 
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Do you have any other symptoms with the back pain? Stiffness? Pain that gets better with movement and worse with rest? Pain in other joints?

There is a type of inflammatory arthritis that is associated with IBD which causes back pain and affects the spine - spondyloarthritis. It might be worth seeing a rheumatologist.

I would also not see a chiropractor till you have ruled out arthritis - chiropractors can cause a lot of damage if you have inflammatory arthritis. Physical therapy is much safer!

Ice and heat may help a little bit while you're trying to figure out what the back pain is.

Heat seems to not do much but ice helps a fair bit. When it happens it feels like my lower back gets incredibly stiff, kind of like it locks up, and then I very quickly start to feel the pain. If it's low enough pain moving (such as walking) tends to help a little bit, sometimes I can lie on my back on an exercise mat and it can even help, sitting in any way makes it feel worse. Its always preceded by something causing my front to bloat, be it a flare or even if I overeat it could set it off. I'll definitely talk to my doctor about it when I see him later this week. Thank you for sharing that information!
02-27-2017, 08:18 PM   #14
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Jessie,

Do you drive a Chevelle or a Nova? I was wondering cause it sounds by your name you may even have nitrous. I'm a gearhead and I love musclecars.
I just drive a Toyota Corolla, dream car would definitely be a Dodge Viper though.
02-27-2017, 08:30 PM   #15
Maya142
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Here is some info:

http://www.crohnscolitisfoundation.o...plications.pdf

Also check out www.spondylitis.org

Definitely worth asking your GI about, though it sounds like it could be referred pain from your stomach. But the stiffness you describe is common with inflammatory arthritis, so hopefully your GI can refer you to a rheumatologist.
02-27-2017, 08:30 PM   #16
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I want a Chevelle or Camaro SS. With nitrous! LOL I used to have a Firebird. Good times.
02-27-2017, 08:40 PM   #17
StraightShotSS
 
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Here is some info:

http://www.crohnscolitisfoundation.o...plications.pdf

Also check out www.spondylitis.org

Definitely worth asking your GI about, though it sounds like it could be referred pain from your stomach. But the stiffness you describe is common with inflammatory arthritis, so hopefully your GI can refer you to a rheumatologist.

This sounds incredibly similar to how my back feels, including the problems taking deep breaths due to what feels like limited rib movement. I will definitely bring this to my GI's attention next time I talk to her.
02-27-2017, 08:44 PM   #18
Maya142
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My girls and husband all have spondyloarthritis (SpA) and they all say rib pain when taking a breath can be excruciating. So can back pain.

The good news is that Remicade treats both SpA and IBD. So hopefully your back pain will get better soon. It took both my girls 3-4 infusions to respond to Remicade.

Voltaren gel may help, but since it is an NSAID, check with your GI before using it. Most GIs are ok with it since it's topical and not much is absorbed.
02-27-2017, 08:55 PM   #19
StraightShotSS
 
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Hi SS.

Unfortunately I have heard of a case like yours. It is mine. I really feel for you. My guts are having sympathy pains.

The pain from an obstruction is extremely intense. The pain will put you on the floor, cause you to roll up in ball, and comes in waves. This was the absolute worst pain I ever felt in my life. It is 10/10. The pains hit more in the evening. What was causing mine was a Crohn's mass. The obstruction was very large and I had surgery to remove the mass. The mass consisted of 3 feet of my small intestine and 6 inches of my colon. My surgeon told me the passageway was only the diameter of a pea. After my surgery, I was able to enter the IBD world of Diahreah being my worst symptom. Even then I have had to prevent strictures from coming back by taking heavy duty biologic meds such as Humira and now Entyvio.

The pain would come from my lower right abdomen and would put a lot of pressure on my lower back, due to rolling up in a ball. I remember the back pain very well. But I have not had any pain even close to what I had in the flares before I had surgery. The surgery was by far the best thing I ever did to get the Crohn's under control. In fact, after surgery I did not need the pain medication they gave me. I only pushed the button for morphine 1 time. The post op pain was not as bad as the pain from the obstruction. Honestly the surgery was the best thing I could of done.

Let me know how things proceed for you. I'll be thinking of you.

That's how I feel whenever I flare up, completely obstructed and pain starting from the lower right, although thankfully no where near as bad as your sounds my flare generally puts me at a 3 or 4/10, going up temporarily to a 6 or 7 with each wave.

My problem is I have 3 spots where this happens that are spread out along my small intestine, so if they were to operate they'd likely have to remove almost my entire small and intestine and give me a bag instead, and id love to do anything to avoid that if I can. I'm glad to hear your operation made things better than they were.
02-28-2017, 01:24 AM   #20
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I can relate to lower back pain, although my symptoms are not as severe as yours, most of the time I experience soreness. I went to the therapist to massage on my back 3 times a week, and I went to the gym to strengthen back muscles (not just lower back but the upper and middle). If you can't do any strength training, there are some stretches you can start with to relieve some discomfort.
02-28-2017, 02:17 PM   #21
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My problem is I have 3 spots where this happens that are spread out along my small intestine, so if they were to operate they'd likely have to remove almost my entire small and intestine and give me a bag instead, and id love to do anything to avoid that if I can. I'm glad to hear your operation made things better than they were.
The 3 spots is quite serious. They cannot take the entire small intestine, after all, you need to be able to absorb your food. I hope the Remicade puts you into remission. It will take some months to know if the Remicade is having an effect.

As far as your back is concerned, have you looked into Ankylosing Spondylitis? It is a common form of arthritis for us Crohnies. I have not had joint pain in my spine, (could have fooled me when the severe flares were happening). But I have had joint pain in my knees and ankles.

Hang in there. With treatment things will get better.
02-28-2017, 02:25 PM   #22
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Ankylosing Spondylitis is a type of Spondyloarthritis - mentioned above. Spondyloarthritis is just the umbrella term and AS is a specific type.

DougUte is absolutely right - SpA is more common than you'd expect. Axial Spondyloarthritis and AS affect the spine/sacroiliac joints. Peripheral SpA affects other joints - often knees, heels, ankles but any joint can really be involved.

Peripheral arthritis tends to flare when IBD flares (but this is not true in all cases - just many of them). Axial arthritis tends to flare independent of IBD flares and has to be treated as an independent disease, whereas with peripheral arthritis, just getting the IBD under control usually works.

Good luck!
02-28-2017, 03:05 PM   #23
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Yes, good luck Jessie. Keep us informed bud.

cmack
02-28-2017, 07:54 PM   #24
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Spoke to my family doctor today, told him my story regarding my back and he helped put my mind at rest. Without telling him where the pain starts he put his finger right on the spot and said "The pain starts here right?" turns out I've been having muscle spasms, he's 100% on his diagnosis. Gave me a prescription for muscle relaxants to take 3 times a day for for 5 days, said to check in next week.

Took the first pill about an hour ago and I must say I feel amazing, I could feel my back muscles start to let go and didn't realize how tense I've been for what have been weeks, things are looking really promising!
02-28-2017, 08:07 PM   #25
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Glad to hear that. Hope the muscle relaxants give some long term relief.
02-28-2017, 11:37 PM   #26
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SS,

May the success continue.

I take muscle relaxants too. They help. Have a better tomorrow.

cmack
03-03-2017, 04:51 AM   #27
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I've had Crohn's disease since I was 15 yrs. old. I am now 19, at first I had diarrhea, severe stomach pain, weakness. I went to the hospital and they told me it was a stomach virus, I went on antibiotics and nothing seemed to be helping that was how it went for 6 months, in that time I lost 102 lbs.
03-03-2017, 10:12 AM   #28
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Varovalexi,

That sounds serious. Did you ever recover? I hope you still see the doctor regularly.

How are things now?
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