Need helpful advice for my Mom

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Aug 12, 2011
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Hi everyone, my name is Dan and I just joined you all. I apologize if I am being presumtuous by jumping right in with a question, but my Mom is in a crises and I need all the help I can get.

Crohns runs in my Mother's family-my grandmother battled with it, my uncle has had symptoms since his youth (now he's near 70 yrs old), my aunt just had emergency surgery to remove part of her intestine in the last 2 months, confirming she has crohns, and my mother has been battling digestive issues for the past 4-5 years, but has yet to be diagnosed.

About 3 months ago my mother was prescribed an antibiotic for a UTI, which we figured out later inflamed her small intestine; she was unable to eat, then unable to handle clear liquids by the time she went to the ER. She has chronic diarrhea more often than not. One of her tests showed a blockage of sorts that turned out to be basically a dead spot that nothing could pass thru (due to the inflamation). Having some family experience, I pushed the doctor to administer flagyl, which worked well on reducing the inflamation and she made a rapid recovery-able to eat and drink to gain strength.

She was out and under the care of both a gastroenterologist and family doctor. The flagyl, while i know is not a miracle cure, has worked in every instance (4-5 times total), but my Mom just went into another episode. Last friday she felt a little under the weather but didnt realize why. By saturday, she had trouble getting out of bed and couldnt hold food down. She started taking the flagyl pills and trying to reach either doctor. She improved some on monday and was able to finally get the doctor to call in a script. Monday night she got much worse and could not even keep water down.

She checked herself into the hospital tuesday and they were set to operate, even though they had no clue what to look for. Instead though, the doctor actually read her chart (in the past, this has been a rarity) and began treating for crohns by giving steroids, flagyl, and assorted vitamins. It is not working this time though, and my Mom says she is incredibly bloated around her belly, making her look and feel 9 months pregnant. The hospital staff claims the bloating is due to her body not absorbing the potassium supplements, but having looked for this issue and asking a friend (who has been an RN for 30 years), noone has ever encountered this problem.

It has been a week since my Mom has eaten anything. Each time she drinks the clear liquids, it sends her to the bathroom. She is getting meds for nausea, diahrrea, the inflamation, pain in her abdomen, plus fluids and vitamins, but none of these have improved her condition that she can tell.

I apologize for the long post, but i am truly hoping someone will read this and have a memory sparked and offer some ideas or wisdom to offer. I need to get her out of the crises point before we can think about long term treatment. The last couple years have been nearly unbearable for her, and she is close to giving up. I know things could be worse, but they are getting pretty bad. Thank you all in advance for any advice you have to give!
 
Hiya Dan
and welcome

Your poor Mum! And well done you for helping her by joining us! You're very welcome.
We have an Undiagnosed Club, there will be people in there who will help, advise and support you with this.

http://www.crohnsforum.com/forumdisplay.php?f=75

Sounds like she's been on a lot of IBD meds, is a second opinion out of the question?

Just on a side note; something that I ask most women; ask your Mum if she has seen a gynaecologist about her bloating and other symptoms that might be the reproductive system rather than the digestive system? Just to eliminate it.
Take care Dan, and love to your Mum, see if she'd like to come and join us?
Joan xxx
 
Its always a good idea to take probiotics after a strong course of antibiotics. When all the bacteria in the gut is killed its easy for a secondary infection to take place, like c.diff.
 
You said that about 3 months ago or so she had a blockage of "dead tissue" meaning scar tissue. No amount of medication will get rid of scar tissue. It can only be stretched or given a strictureplasty or removed via resection (depends on the severity for each procedure). The meds help with inflammation and to prevent further inflammation but will not restore dead (scar) tissue. If nothing is done about the scar tissue then these issues will keep happening and could result in a full obstruction which can be deadly. I'd get this obstruction sorted immediately (there are tests they can preform to find out where it is and how bad it is) and in the mean time continue to try and get a diagnosis (with more testing) so she can be treated properly with the right meds (cause Flagyl can only do so much, I've never taken it to help with Crohn's) and not have to deal with these issues again in the future. Welcome to the forum and I wish her luck!
 
Thank you all!

Well, my Mom ended up having emergency surgery yesterday. After a night she described as the most terrible of her life. I had thought that her 'blockage' was simply parts of her small intestine that were basically inflamed to the point of being paralyzed, since that had happened a couple times in the past. However, the blockage was a physical one, due to a crohns flare up. They rushed her in to remove the section because her intestine had perforated. Luckily, they informed me that she came through the procedure well. She is rather miserable now, but we have confirmed what we are dealing with and can seek better treatment now.

I have already began looking into better specialists using the list on the crohns and colitus foundation. I am convinced that she had quite shabby care the last couple years, with everyone from her family doctor, specialist, and the hospital. The surgeon admitted that she should have had this surgery 2 months ago, but they failed to catch the problem. She has enough trouble without worrying about greedy doctors who don't care about her health, so those doctors will be replaced.

Thank you all for your support. I truly do appreciate it. I need to try to rest now, as I have not been resting much with so much worry in my heart.
 
Glad she made it through and I wish her a speedy recovery. Sorry to hear about the shabby doctors. Sadly that's all too common. Hope you find some that do their job this time and get her back on her feet. Rest well. :)
 
Aw Dan, your poor Mum.
But... hopefully this op is going to help her recover now. She'll soon be on the mend and back to her old self soon.
You take care too Dan and rest, keep in touch, let us know how she's getting on
xxxx
 
Long recovery

Thank you all for your kind words. The past few weeks have been stressful, to say the least. I finally was able to make it to the area to see to my Mom's care and have been appalled by her condition.

I was informed by the nurses that she was not recovering as fast as she should be. Come to find out she is filling up with fluid so badly she looks 8 months pregnant, and it is causing her such pain that they put her back on morphine on an hourly dose (the surgeon did not put a drain in), and she has an infection somewhere in her body, but they have yet to figure out where. They have no plans to put a drain in at this time, but simply expect her to hop out of bed and walk it all off, even being so full of fluids that her incision bursted open and had to be steri-stripped shut. So, not only does my family need to support her in the normal ways, but also have to file complaints with the hospital and jump up and down like an organ grinder monkey to get them to provide the most basic care. Sorry, I had need to vent my frustrations, and this seemed the more appropriate way of doing so rather than banging doctors heads together like cymbals, lol.

My mothers sister just had similar surgery done about 2 months ago. They did put a drain in her and she was out of the hospital in about a week. Her respite was short, however, since she was trouble free for one week, then back in the hospital for C-diff. Got that cleared up, and a week later had a crohns flare up and is currently treating that. Seems, when it rains, it must be monsoon season, i suppose.
 

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