Hi, my name Barbara, 50 years old living in Prescott AZ.
In January I went to ER with horrible stomach pain and diarrhea. Did CT scan ultrasound said possibly pinched nerve, gave me pain medication and sent me home. Seeing pain management for back problems so pain RX controlled some of that pain and I learned to deal with it and went to work. I'm a cashier at Sprouts.
End of May early June pain out of control and nobody can tell me whats wrong. In the ER twice in June, 2 weeks apart from each-other and still no answer. The doctor told me to go home and take Zantac. My pain doctor referred me to a GI specialist finally, had colonoscopy and finally some answers.( in the meantime went to an upper DI doctor, had endoscopy and everything was good.)
GI doctor diagnosed me with Microscopic Lymphocytic Colitis. Put me on Budesonide 9mg a day. I'm also on Morphine 15 mg 3 times a day for the horrible pain.(doubled over stomach pain which is worse than having a baby).
Does this get better and how long till I feel some relief? I can't go anywhere because of the diarrhea. Stomach grumbles so loud you can hear it across the room. Miserable miserable and very sick and all I want is to go back to work.
Please any advice will help me so much with coping with this.......
recently diagnosed and very sick
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Barbara,
Welcome to the group, sympathies that you had to find us.
I can empathise with you about the pain, I had episodes of it my whole life. In my late teens, early 20's, I was hospitalised with it, and the conclusion given at the time was 'growing pains'
The good news is, you can get better, reduce/eliminate the pain. The not so good news is that there is no quick fix.
Read some of the topics/information for newbies, and discussions with other new people. regardless of what medication you use, the best way to wellness, pain free living, is making necessary changes to your diet/lifestyle.
The sooner you can eliminate major triggers, the sooner you can feel better.
As you read the discussions, it can get a bit overwhelming. Take your time, ask questions.
This forum is a great bunch of knowledgable, compassionate people.
Take care
Welcome to the group, sympathies that you had to find us.
I can empathise with you about the pain, I had episodes of it my whole life. In my late teens, early 20's, I was hospitalised with it, and the conclusion given at the time was 'growing pains'
The good news is, you can get better, reduce/eliminate the pain. The not so good news is that there is no quick fix.
Read some of the topics/information for newbies, and discussions with other new people. regardless of what medication you use, the best way to wellness, pain free living, is making necessary changes to your diet/lifestyle.
The sooner you can eliminate major triggers, the sooner you can feel better.
As you read the discussions, it can get a bit overwhelming. Take your time, ask questions.
This forum is a great bunch of knowledgable, compassionate people.
Take care
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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fatbuster205
- Gentoo Penguin
- Posts: 342
- Joined: Tue May 22, 2012 7:53 am
- Location: Carrickfergus, Northern Ireland
Oh Barbara,
Welcome! But MORPHINE?? Seriously, that will cause constipation and will make things worse. That much pain - go back to the docs! I have experienced excruciating pain (but I have never done Labour) but I have never needed morphine to my knowledge. Others will be able to advise you better than me, but seriously that level of pain needs a definite diagnosis surely?
Hopefully, you will find answers and sound advise here! In the meantime, I really hope your pain gets under control soon and that you start to feel yourself again!
Love, hugs and prayers!!!
Anne
Welcome! But MORPHINE?? Seriously, that will cause constipation and will make things worse. That much pain - go back to the docs! I have experienced excruciating pain (but I have never done Labour) but I have never needed morphine to my knowledge. Others will be able to advise you better than me, but seriously that level of pain needs a definite diagnosis surely?
Hopefully, you will find answers and sound advise here! In the meantime, I really hope your pain gets under control soon and that you start to feel yourself again!
Love, hugs and prayers!!!
Anne
If you ever feel too insignificant to be noticed, you have never been to bed with a mosquito!
Hi, Barbara. You have come to the right place for help. I am fairly new here, diagnosed with LC in 9/13. After 8 weeks of the Pepto Bismol treatment recommended by my GI I have controlled the D by diet. In addition to cutting out gluten (which I at first thought would be the key), I had to eliminate dairy and many other things. I would suggest you read the posts here and purchase Tex's book which is located at the top of the page on the right. The posts and the book will help you to figure things out. It's not an easy journey, but you will be able to find relief. What one person can eat might not work for someone else. Good luck and hang in there.
Marcia
Marcia
Hi Barbara,
Welcome to our internet family. I often had the type of pain that you described, back when I was still reacting (before I changed my diet). Most GI docs will insist that pain is not associated with MC (because it was not mentioned in the original medical description of the disease), and that's true for some of us. But it's definitely not true for all of us. The level of pain that you described is not common with MC, but it definitely happens to some of us. I couldn't sleep at all, many nights, and I was unable to work, much of the time. At times, the pain was excruciating. Fortunately, my pain wasn't constant — it waxed and waned.
I got my life back by eliminating from my diet, the foods that were causing me to react. Medications can mask the symptoms, but the only way to prevent the inflammation that causes the disease from being regenerated every time you eat another meal, is to make drastic changes in your diet, to eliminate the foods that are causing the problem.
Many people who are newly-diagnosed wonder how they could possibly suddenly become sensitive to foods that they have been eating all their life without any problems. The answer lies in the fact that when the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity are also triggered, and that makes us vulnerable to various other food sensitivities, presumably depending on which particular genes we happen to have. Of course most GI specialists still argue that diet has nothing to do with MC, but they are dead wrong. They simply have not had the proper training to allow them to properly treat the disease.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. I often had the type of pain that you described, back when I was still reacting (before I changed my diet). Most GI docs will insist that pain is not associated with MC (because it was not mentioned in the original medical description of the disease), and that's true for some of us. But it's definitely not true for all of us. The level of pain that you described is not common with MC, but it definitely happens to some of us. I couldn't sleep at all, many nights, and I was unable to work, much of the time. At times, the pain was excruciating. Fortunately, my pain wasn't constant — it waxed and waned.
I got my life back by eliminating from my diet, the foods that were causing me to react. Medications can mask the symptoms, but the only way to prevent the inflammation that causes the disease from being regenerated every time you eat another meal, is to make drastic changes in your diet, to eliminate the foods that are causing the problem.
Many people who are newly-diagnosed wonder how they could possibly suddenly become sensitive to foods that they have been eating all their life without any problems. The answer lies in the fact that when the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity are also triggered, and that makes us vulnerable to various other food sensitivities, presumably depending on which particular genes we happen to have. Of course most GI specialists still argue that diet has nothing to do with MC, but they are dead wrong. They simply have not had the proper training to allow them to properly treat the disease.
Again, welcome aboard, and please feel free to ask anything.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Barbara,
Welcome aboard. Sorry to hear you are in so much pain.
I personally have not experienced that level of pain. The pain I have experienced has been short lived and usually relived by a BM. The only exception for me was once when I ate popcorn. I felt that scratching through my insides trying to get out :-(
If your pain is severe enough to take morphine then IMO there might be another issue involved. Try the elimination diet and see if that helps the pain.
Welcome aboard. Sorry to hear you are in so much pain.
I personally have not experienced that level of pain. The pain I have experienced has been short lived and usually relived by a BM. The only exception for me was once when I ate popcorn. I felt that scratching through my insides trying to get out :-(
If your pain is severe enough to take morphine then IMO there might be another issue involved. Try the elimination diet and see if that helps the pain.
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
Update- off pain medications 
Feeling better each day. Some days are more of a challenge. Have been taking Budesonide 9 mg every morning since 7/15/14, along with Dicyclomine. On gluten free diet and no dairy. My appetite is not very good. Just starting to add meat back into diet.
Everything I do now revolves around this disease. Just want to go back to work but then again I need to be 100% better. (which I feel will take forever)
Any advice out there??
Feeling better each day. Some days are more of a challenge. Have been taking Budesonide 9 mg every morning since 7/15/14, along with Dicyclomine. On gluten free diet and no dairy. My appetite is not very good. Just starting to add meat back into diet.Everything I do now revolves around this disease. Just want to go back to work but then again I need to be 100% better. (which I feel will take forever)
Any advice out there??
Hi Barbara,
I'm fairly new here also, dx June of this year. I cut out gluten and dairy and I feel like a new person. I can go shopping, grocery, work etc.. I'm still on a very limited diet, mostly bone broths and well cooked veggies. Everyone here has been so kind and knowledgeable, actually a life saver. I'm sure some others with way more experience will chime in but your at the right place. I'm sure of that.
Happy healing,
Connie
I'm fairly new here also, dx June of this year. I cut out gluten and dairy and I feel like a new person. I can go shopping, grocery, work etc.. I'm still on a very limited diet, mostly bone broths and well cooked veggies. Everyone here has been so kind and knowledgeable, actually a life saver. I'm sure some others with way more experience will chime in but your at the right place. I'm sure of that.
Happy healing,
Connie
Live, Laugh & Love Much
Hi Barbara,
Connie is quite correct. Unfortunately, it takes some of us a long time for the intestinal damage caused by gluten to heal. But you are clearly on the path to recovery, and healing is in progress. As you stay the course, you should see slow but sure improvements. Sometimes we have setbacks, because this is a tough disease to bring under control. It can be difficult to see any improvement on a day by day basis, but if you look at at your condition on a monthly basis, you should see continued improvements as your intestines continue to heal. And 1 by 1, your symptoms will slowly fade away.
IBDs are associated with a vitamin D deficiency, so many of us have a vitamin D deficiency unless we take a substantial amount of supplemental vitamin D. Many of us here take 3,000–5,000 IU of vitamin D daily, and some take more if they know (by test results) that they are low on vitamin D. This disease is also frequently associated with a vitamin B-12 deficiency, so many of us take a vitamin B-12 supplement. Sublingual supplements (lozenges that are dissolved under the tongue where they are absorbed directly into the bloodstream) are preferred for us, because they avoid the malabsorption problem that MC usually causes when we are reacting. Taking these 2 vitamins can help many of us to feel better, because if we are low on vitamin D, our immune system suffers and we have trouble healing and fighting off infections, viruses, etc. And if we are low on vitamin B-12, we will be low on energy (we may even be anemic), and we can develop various neurological symptoms that interfere with our recovery and our enjoyment of life.
Your loss of appetite is very likely due to the dicyclomine (loss of appetite is listed as a side effect on the label). I'm not a doctor, so I can't advise you on taking or discontinuing the dicyclomine, but it takes protein to heal the gut, so the more protein we are able to eat, the faster we are able to heal, in general.
Thank you for the update, and I hope that your recovery continues to go well.
Tex
Connie is quite correct. Unfortunately, it takes some of us a long time for the intestinal damage caused by gluten to heal. But you are clearly on the path to recovery, and healing is in progress. As you stay the course, you should see slow but sure improvements. Sometimes we have setbacks, because this is a tough disease to bring under control. It can be difficult to see any improvement on a day by day basis, but if you look at at your condition on a monthly basis, you should see continued improvements as your intestines continue to heal. And 1 by 1, your symptoms will slowly fade away.
IBDs are associated with a vitamin D deficiency, so many of us have a vitamin D deficiency unless we take a substantial amount of supplemental vitamin D. Many of us here take 3,000–5,000 IU of vitamin D daily, and some take more if they know (by test results) that they are low on vitamin D. This disease is also frequently associated with a vitamin B-12 deficiency, so many of us take a vitamin B-12 supplement. Sublingual supplements (lozenges that are dissolved under the tongue where they are absorbed directly into the bloodstream) are preferred for us, because they avoid the malabsorption problem that MC usually causes when we are reacting. Taking these 2 vitamins can help many of us to feel better, because if we are low on vitamin D, our immune system suffers and we have trouble healing and fighting off infections, viruses, etc. And if we are low on vitamin B-12, we will be low on energy (we may even be anemic), and we can develop various neurological symptoms that interfere with our recovery and our enjoyment of life.
Your loss of appetite is very likely due to the dicyclomine (loss of appetite is listed as a side effect on the label). I'm not a doctor, so I can't advise you on taking or discontinuing the dicyclomine, but it takes protein to heal the gut, so the more protein we are able to eat, the faster we are able to heal, in general.
Thank you for the update, and I hope that your recovery continues to go well.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.