Frightened, Have lost so much weight from Chro... - IBS Network

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Frightened, Have lost so much weight from Chronic and severe constipation..help!

22 Replies

I have suffered from Chronic and severe constipation for as long as I can remember. I remember my parents telling me They had to sometimes give me enemas as a child. Things seemed to get better in my teens, twenties and thirties. In my early 40's, things went downhill hill again. I had a bad fall from a horse show over a tall water jump which left me with severe degenerative back pain, sciatica, ruptured disks, bulging disks. Visits to a chiropractor has done little to relieve the pain. I finally had to resort to a pain management clinic and was put on the lowest dose of Hydrocodone. I took it exactly as prescribed. Unfortunately, the pain was severe enough where I also was presribed Naproxen 500 and Methocarbamol muscle relaxers. Shortly after that in 2011 I had a ruptured appendix, had it removed and they saw large cysts in my left ovary and to right one. They had to remove the left ovary and tube and large cyst from right ovary. I was 49 at the time, it was back to back surgeries. That seemed to aggravate the constipation even more, so I went to a Gastroenterologist for a biopsy for something different, and told him about my constipation issues. He asked if I had colonoscopy, I said yes, I had one at age 44, no polyps were found. He did not seem to concerned and hand wrote on a slip of paper to eat fiber, and either take benefiber, or Citrucel. I remember I took one of them, and it worked, but for some reason, I stopped taking it. Not sure why, as it was a long time ago. Then I tried it again, and had incomplete bowel movements, tried 8 glasses of water, flaxseed, Metamucil, prunes, prune juice, bran cereal, strawberries, olive oil, coconut oil, everything to no avail. I was starting to have maybe one or two bowel movements a week, which were pellets and I had to strain. Developing large internal hemmorrhoids. Pain management Doctor prescribed Senna-Lax. Told me to take it every day, but I did not want to do that, as I have required groups I have to attend, Doctors appointments, etc. I have to make sure I am near a toilet the next day because I am going all day. I am only taking the recommended dose. I tried Miralax, but it gave me severe cramping and saw that FDA put a black box warning on on it. Since I am severely constipated fiber only makes things worse. The only thing that works is Senna-Lax. I take three 8.6 tabs once a week at bedtime on Saturday night. I don't have any appetite loss, but do have some cramping in my lower abdomen after I eat alot. I just had a colonoscopy 3 weeks ago by the same Gastroenterologist I saw who wrote on the slip of paper. He said he found two polyps, non cancerous. He is dismissive of me, always seems to be at the hospital and never available to address concerns, and his nurses don't know the answers and have to page him at hospital, and they never get back to me. He prescribed Bentyl for cramping but it only constipates me further. Then he prescribed Linzess, which gave me bad stomach pain. Then he told me "more fiber and stool softener" which I told him before did not work. Now, he does not know what to do with me, and has referred me to a colon and rectal specialist. I used to be a happy, outgoing person a year ago. Then I stopped Opiods cold turkey thinking constipation issues would improve and things have only gotten worse. It seems my whole digestive system has shut down. I no longer take Opiods, muscle relaxers or the Naoroxen, not even an occasional Ibuprofen. Now I am miserable, no social life, have lost all my friends, because I can't go anywhere. The Gastro seemed unphased with my rapid weight loss. I am at a loss of what to do. This is no way to live. I am so thin now. People look at me with pity and I'm tired of "you are losing so much weight comments". I'm scared. Can anyone relate? Please don't tell me to not take laxatives, because my colon is already damaged, and all the fiber, fiber supplements, water and exercise does not help me. I am tired of constant ER visits. Help!

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22 Replies
b1b1b1 profile image
b1b1b1

Find a new gastroenterologist. You are being treated shamefully by your present one. Also, pursue the colo-rectal doctor. I recently had colo rectal surgery for a blocked small intestine and found the surgeon very knowledgeable. Also, maybe discuss the whole situation with a good gp to get some overall advice.

in reply to b1b1b1

Thank you for your reply. I'm afraid the unhelpful gastro referred me only due to large internal hemmorrhoids. At this time, I am in housing, and have to attend mandatory groups, or we get written up. Three write ups, we lose our housing. I'm on SSDI, and have very low income, and have nowhere to go, no money saved up for another apartment. No family or friends who can help me. So surgery is out of the question right now. The straining from the severe constipation will only make the hemmorrhoids come back anyway, and the pain is not worth it. I am at a loss of what to do. I only have Medicare and they will not pay for another bowel exam by another Gastro, or I would definitely consider it. Most Gastroenterologists are so busy doing colonscopies at hospitals they do not have time for one on one office visits to address constipation concerns. They will only schedule new patients so they can make money on colonoscopies. It seems like a no-win situation. I feel hopeless.

b1b1b1 profile image
b1b1b1 in reply to

I don't know where you live, but I have found a gastroenterologist who does take the time to see IBS patients, in addition to doing colonoscopies. Sometimes there can be a bit of a wait to see a good one, but is probably worth it. Good Luck.

in reply to b1b1b1

Thank you, I am hoping to find someone like that. I am feeling more hopeful right now. In the meantime, I can talk to a dietician about some kind of way to put on weight. Thanks for the help.

missymo profile image
missymo in reply to b1b1b1

Did our surgery work??

b1b1b1 profile image
b1b1b1 in reply to missymo

Yes it did, thank goodness.

missymo profile image
missymo

I can relate.mine used to be diohrea nowith irtsunami constipation all the time.my appendix burns 7 years ago.I was so full of poison my bladder was taken away a year late.I have a "wee bag" now 2 years on my bowel wall is thickening. Pain everytimeI eat.not much social life.& the anxiety & depression it's caused me is awful. Tired all the time. I really feel foreally you. I've spend loads of money on private medics bit nothing can be done. I keep windeze & rennies with me all the time.x

in reply to missymo

I'm sorry you are going through this. I wish things didn't have to be this way for both of us. I don't normally complain, but I have been suffering in silence with this for years. No one here wants to listen, or talk about it..so I don't say anything. I wish there was a face to face support group, but I am on disability and we have poor access to transportation. Doctor's don't want to help, they just dismiss you. I keep praying for an answer..but nothing. I hope we can find a solution.

missymo profile image
missymo in reply to

It's a nightmare isn't it? Nothing seems to work! Total misery day after day keep your chin up.we are not alone.x

in reply to missymo

Thank you for your understanding. It is a vicious cycle. Laxative. Feel better for a few days. Constipated again. Repeat process. Feel better. Constipated 2 days later. Nothing works. I see people going to Taco Bell. Wendy's, eat pizza, ice cream, hoagies, and wish for one day, I could be like that again. I used to eat like that (in moderation). Now I can't do that anymore. I feel so much envy for these people. I hate to say that. I just want my life back. I went and bought some Magnesium Glycinate hearing that helps greatly with constipation, stress, insomnia, but trying not to get my hopes up.

missymo profile image
missymo in reply to

I.m not spend ingredients anymore on so call ed miracle cures! I've had enough.I. m going to stick to milk of magnesia. It's a mild laxative& helps with nausea. I've got this for life now& I. My sick& tired of being sick& tired. X

in reply to missymo

I'm not sure if it's a "miracle cure" have given up on that too..but I do know that and researched on the benefits of magnesium for constipation. Tried MOM in the past. Gastro said not good to take it long term..but I did, and it gave out on me. Hoping this will work. I'm glad you found something that works. That's something to be hopeful about.

Jayneelizabeth profile image
Jayneelizabeth

I wonder if stronger exercise would help? You need to walk for several hours a week, preferably two hours a day, also could you run at all? We found these work well to sort out the gut which gets in knots over absolutely everything. Horse riding not enough exercise for below the waist? Need to stride out on regular basis with walking, the gut is an old thing, not much evolved from when we walked the plains of Africa? Here our ancestors must have been on the move much of the time. Dont sit down for too long. Modern life is dire for the gut, we are not meant to sit on computers, in cars, offices etc.

in reply to Jayneelizabeth

I don't have a car. I on on disability. I live downtown so I walk a mile every day for 5 days a week. The drivers are rude here, so I have almost been run over just crossing the pedestrian crossing. You get 20 seconds. I try to hurry, but drivers don't care and rush in front of you, barely missing you. I cant run, due to severe pain from degenerative back disease. I no longer show horses since the accident. Thanks for replying.

Jayneelizabeth profile image
Jayneelizabeth

So sorry to hear this, overall very difficult for you.

Yes, in some way or another, we are all suffering.

Just a thought for you Eliana. You have logically looked at all the physical sides of what you are experiencing, but have not really found any answers there.

I found that to get rid of my IBS I had to address not only the physical side of things, but also emotions (especially suppressed emotions), energy balance in my body, and mental thought patterns (conscious and subconscious). If you are curious about any of this, you may find some of the articles on my blog helpful (sickofibs.com).

Alison

in reply to

Thank you. I have tried Mindfulness, Meditation (which for some reason I just can't seem to do, no matter how hard I try), you Tube videos, Abdominal massage, Medicare won't pay for anything holistic. Eckhart Tolle "You Tube" videos on relaxation..but all the relaxation and reading does not help. I'm at a loss. Thank you for replying. I will read the sickofibs.com. But no matter how sick of it I am, I have had severe digestive issues since going off opiods from degenerative back disease over a year ago, and I am even more constipated then I was when on the opiods. The Gastro said after colonoscopy "IBS" but I think I have alot more going on. I don't think IBS causes this much weight loss.

in reply to

I just read. I mean no offense to anyone..but there is no scientific data to prove this liver and gallbladder "cleanse" is the root of our depression, anxiety or constipation problems..there are no scientific articles, professional journals to back up these claims. Just another snake oil remedy for people suffering that will try to buy anything to end their suffering and I find this very sad. Where is the scientific data to prove this? Where is this persons credentials? Are they a Doctor specialising in digestive disorders or just a sales pitch for yet another expensive product that does not work? Stuff like this should be banned from the internet unless someone has proof, credentials, expertise, scientific data, cause and correlation, proven research studies. None of this is mentioned on website that I saw. Who know what is In this stuff. Please be careful with so called "cleansers" they may do more harm than good. The website does not mention what ingredients are in this product, what subjects were tested, or any examples or scientific evidence backing up these claims. I majored in Research and Statistics and the first thing the professor would look for before even giving us a grade was evidence, subjects tested, proven results, reputable journals. Otherwise just another pitch for a product. Sorry.

in reply to

I owe you an apology. I projected my emotions on to you. You were trying to help me, and my poor coping skills and built up frustration, illness, frustration got the best of me. I am ashamed of my response to you, and hope you will forgive me. I acted very immature. I'm very sorry. I read her blog again, and I think she has alot of very helpful personal insight and advice from her own battles, illness and perhaps it will help me. I have subscribed her her newsletter. Again, I'm very sorry for my knee jerk poor impulse control. I'm just so tired of being sick and tired, still no excuse for my silly response. I hope you have a wonderful day.

Thank you Eliana for your courageous apology. I feel understood, and I hope you do too:)

lariyuyuyy profile image
lariyuyuyy

Have you ever tried cascara sagrada its a herb and it really helps the only thing I have ever used that works and bout every 6 months I stop taking it for a month or so I don’t build up immune to it try it it works

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