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Crohn's Disease Forum » General IBD Discussion » Crohn's with main symptom of constipation. (Long)


04-21-2014, 10:06 PM   #1
sheryl8484
 
Join Date: Aug 2013
Location: San Bruno, California
Crohn's with main symptom of constipation. (Long)

I am begging for any help available. I was Diagnosed in August of 2013 with Crohn's Disease in my small intestines. My Doctor has been confused since the beginning because my main symptom is chronic constipation and of course all of the pain and suffering that goes along with it. He says that while he knows it is possible to have Crohn's disease with constipation it's very unusual and he has never treated a patient with these symptoms. He started me on budesonide 9mg a day and pentasa. It never helped with the constipation so I came off of the steroids and he gave me linzess 290mg a day. It worked for about two months and then it stopped working all of a sudden two and a half weeks ago. I went back to see my GI and he sent me for a CT scan which he said came back showing severe inflammation and thickening of my intestines. Since then he has put me back on budesonide again and still continuing the pentasa and linzess. He also added miralax 2 a day. I am only having a BM every other day at most and it is very small amounts. I continue to feel backed up everyday and nothing is relieving that. For the past three days I have taken 3 ducolax laxatives with very little success and when I emailed him today to tell him that I still am having trouble having a BM he suggested that I take senna laxative..

Have any of you suffered from only constipation? (I have never had diarrhea unless I take a laxative and lately even that is not producing a normal BM) if so what is your treatment plan?

I have had every test I can think of (colonoscopy, barium swallow, pill endoscopy, some blood test and most recently a CT scan) and they all point to Crohn's disease. My GI has officially diagnosed me but nothing is working yet. I can understand that it takes time for medication to start working but I cannot handle the constipation much longer. I feel completely out of it and I'm becoming extremely depressed.

I am sick and tired of people asking me if I feel better. I DONT and I'm not going to over night. I feel like people are looking at me like I'm making this up. Please help me before I have a nervous breakdown.
04-21-2014, 10:10 PM   #2
Orchid
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Join Date: Mar 2014
Location: Springfield, Oregon

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There are some other prescription laxatives you can try like Lubiprostone aka Amitiza. It's a powerful laxative that doesn't seem to have tolerance buildup unlike a lot of other medications for the same purpose. I have sporadic constipation from my Crohn's Disease also I know how frustrating it can be but it sounds like you're in a whole other league.

I hope they found something they can do for you. Please never worry about rambling, we're here to help you.
04-21-2014, 10:19 PM   #3
sheryl8484
 
Join Date: Aug 2013
Location: San Bruno, California
Hi Orchid. Thanks for your quick reply. I forgot to add that I was taking the amitiza before taking the linzess and I was always nauseous. It didn't matter when I took it or if it was with or with out food. I just couldn't handle it 😕
04-21-2014, 10:32 PM   #4
Orchid
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There are quite of prescription laxatives you could try, like Lactulose and other sugar based ones. They're not as popular these days but many of them are quite good at what they do. Don't lose hope, there are a lot of prescription laxatives and you've only tried a few.
04-21-2014, 10:39 PM   #5
theOcean
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I'm sorry to hear that you're dealing with constipation, too. That's one of the problems I've been dealing with since last August, and we can't really find a cause for it. I was going to recommend Miralax before I saw he had already put you on it. What I did for some medications that made me experience nausea was take a zantac (ranitidine) beforehand, and that often helped prevent it, too.

Have you heard of having an obstruction before? I'm wondering if that might be a potential cause for your constipation, or if it might be a buildup of scar tissue. I'm going to tag Afidz here in case she might have any suggestions.

I'm assuming you've already tried fibre supplements, or psyllium husks?

You're definitely not making this up, and I promise you you're not the only person on this forum who has dealt with issues like this. I really hope someone is able to give you good advice and point you in the right direction!
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Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
04-21-2014, 10:47 PM   #6
sheryl8484
 
Join Date: Aug 2013
Location: San Bruno, California
Thank you Both. I have though about an obstruction in the back of my mind but my GI didn't seem to concerned by my CT scan results. I have to email him again at the end of the week so maybe I will mention it to him as well as bringing up some of the other laxatives. Unfortunately he doesn't seem to concerned about a lot of things and often says he's just confused by my symptoms. The huge problem is that he is the only GI I can see in my area because of the insurance that I have 😐
04-21-2014, 10:57 PM   #7
afidz
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If you have severe inflammation, that might be causing your constipation, at the very least adding to it. I have a big problem with constipation right now, but for me its because my pelvic floor muscles aren't functioning properly. I was having some trouble with linzess a few weeks ago, my GI suggested that I take it with something fatty like bacon or eggs or sausage. I also found that drinking excess amounts of water ( I put a little lemon juice in it, but thats just me) helps. I hope you get answers soon
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Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
Inflammatory Arthritis

Failed meds:
Humira
Remicade
Asacol HD
Cimzia
Methotrexate
04-22-2014, 01:15 AM   #8
DustyKat
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It is not uncommon to have constipation when you have small bowel disease, unfortunately the thing most doctors look to with Crohn's is diarrhoea and blood. Neither of my children had diarrhoea (they tended to constipation) or blood as a presenting symptom and they are far from alone in that. They both have Crohn's in their terminal ileum.

As afidz has said, having severe inflammation is the likely reason you find yourself in the situation you are. Be aware that with severe inflammation your bowel will be significantly narrowed and any bulking agents (Metamucil/Psyllium type products) will need to be used with caution and only under the direction of the GI. Use of bulking agents also means that you must drink, at the very least, adequate amounts of water.

You may also need a review of your treatment. Budesonide does work on Ileal Crohn's but whether it would be up to the task of treating severe inflammation may be questionable, you may need to move to the systemic steroid Prednisone. Also Pentasa, whilst working for some, is in general a pretty useless drug for Crohn's disease.

I hope you are able to get things sorted soon and find lasting relief. Good luck!

Dusty. xxx
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04-24-2014, 08:22 AM   #9
Mehita
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I'll just reiterate what Dusty said. My son's main symptom was constipation. Even after an hour long BM he would tell me he still felt clogged up and would point to the area just under his belly button. We did Miralax for awhile, but I knew we needed to get to the root of the problem which was inflammation in his small intestine. Pentasa was basically a placebo for him and I learned that it only works for 50% of Crohn's patients.

Like Dusty said, you may want to try switching to prednisone and consider asking about the next level of meds for maintenance - 6MP/Imuran/Azathioprine.

Good luck!
__________________
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
04-24-2014, 09:24 AM   #10
Paigeyd90
 
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I am begging for any help available. I was Diagnosed in August of 2013 with Crohn's Disease in my small intestines. My Doctor has been confused since the beginning because my main symptom is chronic constipation and of course all of the pain and suffering that goes along with it. He says that while he knows it is possible to have Crohn's disease with constipation it's very unusual and he has never treated a patient with these symptoms. He started me on budesonide 9mg a day and pentasa. It never helped with the constipation so I came off of the steroids and he gave me linzess 290mg a day. It worked for about two months and then it stopped working all of a sudden two and a half weeks ago. I went back to see my GI and he sent me for a CT scan which he said came back showing severe inflammation and thickening of my intestines. Since then he has put me back on budesonide again and still continuing the pentasa and linzess. He also added miralax 2 a day. I am only having a BM every other day at most and it is very small amounts. I continue to feel backed up everyday and nothing is relieving that. For the past three days I have taken 3 ducolax laxatives with very little success and when I emailed him today to tell him that I still am having trouble having a BM he suggested that I take senna laxative..

Have any of you suffered from only constipation? (I have never had diarrhea unless I take a laxative and lately even that is not producing a normal BM) if so what is your treatment plan?

I have had every test I can think of (colonoscopy, barium swallow, pill endoscopy, some blood test and most recently a CT scan) and they all point to Crohn's disease. My GI has officially diagnosed me but nothing is working yet. I can understand that it takes time for medication to start working but I cannot handle the constipation much longer. I feel completely out of it and I'm becoming extremely depressed.

I am sick and tired of people asking me if I feel better. I DONT and I'm not going to over night. I feel like people are looking at me like I'm making this up. Please help me before I have a nervous breakdown.

This is my EXACT problem as well. I have inflammation of my small intestine and when my GI did a colonoscopy, he took a biopsy which he then said it suggests Crohns. I just had my colonoscopy a few weeks ago so this has been all new for me. I thought it was impossible to have Crohn's because I don't have diarrhea. Well.. I have chronic constipation just like you. Sometimes I go 3 days without going to the bathroom and when I do, its only a small amount. I am waiting my follow up appointment to get started on medications. For now, I have been using benefiber and eating activia. I have one activia a day and it has really been helping. The benefiber I have just been putting in my morning coffee! It has made the constipation a lot better but I still have severe cramping and pain with dairy and other foods which makes me think this is definitely Crohns.

Hope this helps to know that you aren't alone!
04-24-2014, 10:38 AM   #11
Megamangas
 
Join Date: Apr 2014
I am 74yrs old and I have suffered with IBS for 30yrs.
Last year I was diagnosed with IBD.
I am taking homoeopathic Aloea 12c which gives me 90% relief from the pain and discomfort symptoms.
For constipation I take Movicol-Half.
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