PDA

View Full Version : IBS and Chronic Sharp Shooting Knife-like Pain


Wowwweee
06-10-2001, 04:04 PM
Hi,

My brother (35) has been diagnosed with the worst case of IBS his doctors state they have ever seen.

I use these boards for my own issues, but thought I'd take a peek in here after talking with my brother today, to see if there's any suggestions that can be offered to combat the intense pain he has 24/7.

Brief Background:
Has had all tests. Nothing else was found to be the cause of his severe pain, cramping, "D" and "C", inability to eat practically anything, and being severely underweight (there was a time when he looked truly malnourished). He was diagnosed since age 16. He had tried various meds, diets, vitamins. He has tried acupuncture, counseling, hyponotherapy, biofeedback, relaxation. Obviously, he is extremely depressed, frustrated, and does have panic regarding this.

Currently, he doesn't eat regularly, which means days without food. His worst complaint is the intense shooting knife-like pains that he has almost constantly, which are worse after eating mostly everything.

Does anyone else have it this severe? He says he feels better when he doesn't eat at all, and sleeping is the only time he is not in pain. Currently he takes valium, which doesn't alleviate his pain, but does seem to aide in relaxing him a bit.

Does anyone else have this type of acute pain? His doctors are at a stalemate, and he has been to see many.

Any other suggestions? We are open to mostly everything - even though he has tried just about everything.

Many appreciated thanks.<p>[This message has been edited by Wowwweee (edited 06-10-2001).]

Annalein18
06-25-2001, 09:04 AM
Wowwweee, I can relate to your brother's problem with pain and inability to eat. I find these things are worse when I'm experiencing anxiety, or when I'm eating foods I shouldn't be eating- sugar, tomatoes, et al. I always feel best when I have nothing in my stomach. I experience shooting cramping pain in my abdomen frequently, accompanied by diarrhea. I am often constipated as well. It is rare that I have healthy, normal bowel movements, and if I do, I usually have some other problem, like nausea. It's a pain... I don't have much advice to give, as I am in the same position as your brother. However, I'm starting to notice a connection for me between sugar/starch foods and cramping/diarrhea/constipation/gas/nausea. I've also been severely stressed this week and have had cramping and diarrhea everyday! I don't rely on my doctors anymore because they are virtually clueless when it comes to IBS. All we can do is find what works for us, which can take a long time! Has your brother tried anti-spasmodics like levsin for his pain? I've heard this works for some people. Also, has he tried an elimination diet? Meditation, relaxation sessions and yoga have been helping me with my anxiety and panic, as well. I'm learning bit by bit to approach my life with a more positive attitude, despite my daily pain and discomfort. I want to live my life again. After all, life truly is 10% what happens to you and 90% how you react to it. I hope your brother finds what works for him.

Wowwweee
06-25-2001, 11:20 AM
Hi Annalein18,

Thank you so much for posting back. I can't believe that no-one else has the same shooting knife pains...or that no-one else had any input to add. I am so happy to get your reply.

I really feel for you if you experience half of what my brother does. I can't believe a human being can take so much. I consider my brother the strongest person I know. Any time I have some kind of illness or sadness, I think of what my brother faces every day and that puts things into perspective for me.

May I ask if you are also under-weight? My brother is only 112 pounds - my dog weighs more than him. I worry about him going days without eating - I am trying to talk to him about taking a multivitamin. But truly, except for "true" liquids, anything he ingests make him awfully ill and no matter how much he eats, he needs to head right to the restroom immediately after - where he can spend hours sitting there. It breaks my heart.

He has been seen my so many MDs, to no avail. Although he is a trouper and has tried everything each MD has recommended. So yes, he has tried anti-spasmodics and many elimantion diets. He has also tried IBS diets. He feels the best when he puts nothing in him at all.

And he schedules his agenda around his eating (when he does eat), meaning that if he knows he is going out on a weekend morning shopping, he will not attempt to eat anything until he comes back home. So obviously, this could mean a few hours between waking and eating.

Do you also suffer from depression and anxiety? I hope you don't mind me asking you such personal questions. Also, my brother seems to carry more anger than anyone else in our family does, which I think can add to his physical feelings.

I'm not sure what else I can do personally to support my brother. I have become tolerant of his mood changes and our changes of plans - we work around his "guts" like he does. I try to be there for him when he needs to vent or cry over his situation. And I encourage him when he feels good enough to get out (rare). He has become quite ruled by his condition, and years of not knowing how he will feel or when he will need a bathroom have conditioned him to usually declining invitations or trying new things. I can't blame him at all, but it does hurt me to see him so limited. Do you feel like this too? What do you do to get past these moments?

What types of outside support do you benefit from?

Again, thank you for your post. Enjoy the day.

Annalein18
06-25-2001, 05:55 PM
Wowwweee, thank you so much for responding so thoroughly to my reply. I am surprised that no one else replied, as well. I wrote another post about pain and no one responded. I guess no one else has pain :-) I hope I can answer all your questions without forgetting what you asked. Your brother's situation sounds very much like mine. I have been very underweight for periods of time as a result of not eating because of my IBS and my anxiety problems...I'm currently about 110 pounds at a height of 5'4"- I've gained weight over the last few months since I've been home from university. I actually had to leave school for a semester because I was so sick with anxiety and IBS that I couldn't (or rather, wouldn't) go out. I've been more calm since I've been back home, so I've been eating better.

As for how I cope, it's tough. I experience this on a daily basis, particularly during high-stress periods. I have severe anxiety problems that started a long time ago at the same time as the IBS symptoms. Panic, agoraphobia, generalized anxiety, depression. I'm in a more positive space lately, despite the fact that I've been really sick the last few weeks. I've been trying hard to adopt a more positive attitude about my life, because I'm so sick of living in fear of pain and illness.

My whole life until now has been based on my gut- the same way you described your brother. I don't eat when I'm going out of the house, travelling (I rarely travel), etc and I never eat in restaurants. I feel sick almost every time I eat and I have developed horrible phobias of vomiting and of my mysterious abdominal pain. I've done therapy for my anxiety, have been on medications, have done tons of GI tests, have changed my diet around to no avail. I am realizing that the great bulk of this problem lies with me. My attitude towards life has been so negative and fearful over the last few years and my body has responded accordingly. I am working very hard now to change my attitude and try to look up despite the pain I deal with. I'm also doing a more thorough elimination diet to try to discover triggers I have been perhaps missing. I don't want to be neurotic and afraid of food and my body's response to it, but to be honest, I don't know how not to be! I'm thinking very seriously of going back to school in September, which is a huge deal as it is 6 hours away from home- my "safe" place- and is in the city.

Anyway, I hope your brother will discover what he needs to help him. I am trying to keep hope that things will improve. I must go now, but I'd love to chat with you more at length about this.

Harry
06-25-2001, 06:27 PM
Hi Wowweee,
Welcome to the IBS board.Ever since you wrote your message, I have been thinking what I would do if I was in the same situation.

When you have severe diarrhea for a long time,you deplete your system of the necessary nutrients including vitamins and minerals.So, you have got to find a way of getting them back into your system. Cramps and spasms that cause pain are caused by the lack of calcium, magnesium and potassium, vitamin D, C & E mainly. But, your brother needs all basic nutrients to live.It make no difference how he get them --someone has to make sure HE DOES. By mouth, sublingual, rectal or IV or anyway!!!


I suggest you use a water soluble fiber supplement that is a bulk stool forming agent and Calcium to slow down the flushing of nutrients. Eat alot of Yogurt and acidophilus to replace the intestinal bacteria that has long ago been washed from his intestines. You have to find a way of replenishing the intestinal "Flora" with beneficial bacteria.

He may have a Candida infection (yeast) or yeast overgrowth in the GI tract and unfortunately there is no way to find out except by a stool sample. And, that only examines the GI tract ---he could have it systemically--in the blood and all other organs.But, there are some pretty good drugs that can help-- Diflucan is one.

You have to feed him foods that are real easy to digest at first. Chicken soup, jello, plain pudding and fresh juices. Also,take digestive enzymes with everything he eats. His system just may not be making enough of what he needs for absorption.I wish you the best.

God Bless---Harry

Wowwweee
06-26-2001, 12:25 PM
Hi:

<B>Annalein</B>, I'm truly sorry that you have had to take a leave of absence from your schooling due to your feelings of anxiety and your IBS. I can relate to your feelings of anxiety, because I have been diagnosed with panic attacks for several years now, only without the IBS. Anxiety is such a wasteful, limiting concern to have, isn't it? I have to work on my stress issues daily. I hope you are able to get past your most immediate fears so that you more like yourself.

In many ways, you sound just like my brother. Over the years, he has developed fears, phobias, and panic too. I think, in part, his phobias are his way of coping. And my brother fears vomiting so much that he can't even talk about it (I am sure that fear of vomiting is related in some way to having IBS). He is generally a depressed person now, and says that he has no joy in life, and forgot what he likes to do to have fun. His initial response to getting together with me is always "no" because he is so used to having to decline invites because of the way he feels.

My brother and I are close, and he and I have talked about how his negative thoughts and feelings can have a large impact on his life in general and on his IBS. However, I remember when my brother (in the past) had good weeks and days (which is very very rare now), his demeanor and mood changed - he was upbeat, happy, well adjusted, and content. I think, for my brother, a lot of how he now views himself and the world comes from him not feeling well all the time, and all the coping mechanisms he has just to get through a routine day. He had made valiant efforts at trying to be more positive - and I see on his face how hard that is. Sometimes he can't even enjoy his evening after work - he goes home, takes a Valium and goes to sleep because he says that sleep is the only time when he is not in chronic pain.

This past Christmas was very bad for him, and when we were replaying the Christmas video one evening, he just broke down crying because even in the video you could tell how poorly he was feeling and looking. We never did finish watching that.

Traveling is out of the question for him. The job that he has now, he was very open about his IBS condition, and he was hired with his employer knowing how limited my brother is. He can work from home when he needs to, and for this past year, that has been often. He has the opporuntity to travel through his job, and tried that about three years ago - it was a disaster and he ended up in high panic in his hotel room dealing with his guts and his anxiety. Thankfully he was able to calm down enough to finish the job, but he ended up cutting his trip short because he too, feels best at home. but his boss is very supportive, and encourages my brother to travel when he's ready.

My brother also prefers to stay home, which I understand because some days my anxiety keeps me close to home too. When he used to have days that he felt good, he would run around all over the place - but back then it was fun, now it takes everything he has some days just to get the basics done.

I hope your day is a little better. Plese post again soon.

<B> Harry</B>, thank you so much for your post. It's so appreciated.

I have been talking to my brother about taking a multi-vitamin. I understand about trying to get nutrients into my brother anyway we can. However, eating anything, even things like Chicken soup, jello, yogurt and plain pudding set him off. Fruit juices tend to make him nauseaus. Like I said, mostly anything he ingests will make him ill. His doctors say that it is the worst case of IBS they have ever seen.

He has been checked for Candida infection and has had his stool samples tested. How does one go about being checked for having yeast systemically?

I will talk to him about taking digestive enzymes with anything he eats. He's tried just about everything - he may have tried this already but I just don't know about it. I have never heard of this, when you have a moment, maybe you can tell me what kind of enzymes and why they work?

He has thought about taking something called Noni Juice. Any comments on this? It's supposed to be a 'wonder' or cure all juice?

Do you have IBS? I hope you don't mind me asking.

Thank you again for all your advice and helpl. I love my brother dearly, and I am trying to learn about IBS as well so that I can be a good support, even if I can't cure him.

Harry
06-26-2001, 01:40 PM
Wowwweee,
I am sure there is a story about your user name??
I have had IBS for 33 years or so.I am a voluneer moderator and a retired Electrical Engineer that has been posting on this board since October, 1999. I have probably written 600 messages about what I think you need to do for IBS base on my experience and study. And,I am a very slow typist so each response takes me more than average to answer --one finger using WEB TV but I still write alot.

If you spend some time seaching and reading past posts that have been written---alot of your questions will be answered. You need to find a Good Gastro Specialist that will work with your brother. I personally have changed GI specialist 5 times in the last 6 years and only found one that was willing to work with me and that was at a Teaching Hospital.
Just because a Doctor says it is the worst IBS case he has seen doesn't qualify him as a GOOD Doctor. I have seen 3 doctors in the last month that have never seen a person with hyperaldosterorism which I have.The point I wanted to make is good doctors are difficult to find!!!

If you want to know about digestive enzymes ----you're not going to find out from a doctor or online. You have to do the research yourself.
God Bless---Harry<p>[This message has been edited by Harry (edited 06-26-2001).]

Annalein18
06-26-2001, 04:36 PM
Wowwweee, I feel so much for your brother. We seem to be leading parallel lives. I must say, he is incredibly lucky to have such supportive people in his life, namely you and his boss. It is ever valuable to have family members (especially) and friends who are supportive and compassionate when you have a chronic illness like this.

About digestive enzymes, there are different kinds that are prescribed. I tried several of them (pancreatic enzymes, and something called G3) but had a severe attack of cramping and diarrhea after taking them, so I sort of wrote them off. It could have been a fluke thing... I was given those enzymes by a naturopathic doctor.

I also did the candida stool analysis test which came back negative. I'm not sure there is a difference between a systemic candida infection and a simple intestinal candida infection. I do know that if the infection is very severe and has been festering for a long time, the candida can morph into its fungal, parasitic form which is invasive and enters the bloodstream, as Harry mentioned. Maybe this is the meaning of "systemic" in relation to candida. When my doctor had me do the candida test, she was convinced I had it based on my symptom profile. So, she put me on a special diet free of sugar/starch/grains/fruit. It was tough but I actually felt a lot better for a while on that diet. Then, I got the results that I had tested negative for candida. Still, my doctor said I could still have the infection because the yeast are elusive and sometimes don't show up on the test... This was very frustrating information and I'm still trying to figure out where to go from here in terms of diet and treatment.

Anyway, I'm sorry to go on so long. I feel a strong connection to your story about your brother. We seem to be kindred spirits. I particularly related to what you said about your brother being anxious and fearful because of his pain and illness. I struggle with the "which came first..." issue- whether I'm sick because of my anxiety or I'm anxious because I'm sick. I often feel that I wouldn't have anxiety if I weren't sick. On the rare occasion I feel well, I don't have nearly as much anxiety, but am still apprehensive about the sickness and pain returning... Anyway, my heart goes out to you and your brother. I really hope we will both discover the proper route to better health. In due time...

Wowwweee
06-28-2001, 06:23 AM
Hi Annalein,

I hope this finds you feeling well today. Don't apologize for "going on so long" - I'm glad you're "chatty", because I am like that, too.

I talked to my brother yesterday - he was working from home because he had awful gut problems that kept him up until 4:30 AM the night before (this happens more and more frequently to him).

Since posting on here and reading what you and Harry have to say, our newest plan of attack is that he is going to get himself a bottle of One-A-Day MultiVitamins for Men, because he obviously could use the nutrients. Hopefully adding this kind of supplement will eventually ease his cramping and spasms, as at this point he is no longer looking for a "cure" but just some relief to get through a normal day.

Also, we are going to looking into possibly trying out Digestive Enzymes. But one thing at a time - his system is so sensitive that he may not be able to handle MultiVitamins and the Enzymes together. I am so happy that he was open to trying the Vitamins. After a while, he gets frustrated when he tries something new with eager and hopeful anticipation and nothing come of it. Understandably so. I am always searching for "cures" to help my brother out. I know he is always looking too, even if it's subconsciously.

We also talked about that you felt better being on the special diet free of sugar/starch/grains/fruit even though you didn't have Candida. He said that that also might be an option, even though he also didn't appear to have Candida. I don't think he enjoys talking about foods/diets because food isn't fun for him at all. He has said that he would be happy if he just didn't have to eat, period.

It's just so difficult for him to eat anything, much less try a new diet. I know you understand what he's saying. He's been on quite a few diets in the past. Some of them seemed to alleviate his worst symptoms for a short time, but they always come back.

Another thought, which may sound weird is eating some Cottage Cheese. Las year I went through some sort of stomach/intestinal irritation that kept me out of work for six weeks. I had some really bothersome bloating - and when I was bloated, I felt full constantly, not hungry at all, and I also felt like I wasn't breathing right when I had this bloating feeling. I lost 32 pounds. was seen by my primary doctor, a gastrointerologist, and a surgeon (for gallstones). At first the doctors were thinking that I was having a gallbladder problem, but then it was suggested that I might have hereditary IBS (my mother, age 63, also has bowel problems). Anyway, the surgeon put me on a very restricted diet to rule out a gallbladder problem (gallbladder pain can be exacerbated by eating fatty foods and some other kinds of foods that are difficult or take long to break down). After a few weeks on this diet, my symptoms slowly started to fade.

That was last July, and although I still find myself having discomfort, I am more back to my old self, even though I notice my stomach. guts, and bowels more than ever. What I noticed was when my stomach and guts were really bothering me, if I stayed on Cottage Cheese (which was an allowed food on the diet), things seemed to settle down. I don't think Cottage Cheese is a cure-all, but I am wondering if there is something in that food that can help alleviate some symptoms.

So, I have been pushing my brother to try some. I know he is leery about trying it for fear that it will set things off for him. But he said he will try some this Friday after work, so if his system really acts up, he has the weekend to recuperate. I keep hoping that we will find something that works so his quality of life is back to what he wants it to be and he gets that sparkle in his eyes again. He is such a loving and wonderful person - I hate to see him in so much daily pain, which has truly colored his life and dampens his personality.

Annalein, I am here for you if you ever need to talk. Although I have not walked in your shoes, I do understand where you are after watching my brother live it for so long, and I can completely relate to your anxiety because I have had my share of panic attacks, high anxiety and phobias - even if they are for different reasons, anxiety is anxiety. I will be happy to share my experience with anxiety and panic if you'd like - maybe you will find something in my experience (which is ongoing) that can give you some comfort or ideas of how to better handle your ups and downs.

I look forward to hearing from you. Have a wonderful day. <IMG SRC="http://www.healthboards.com/ubb/smile.gif">