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06-27-2013, 11:04 PM   #1
lservies
 
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More pain ahead

My name is Lori. I am currently 50 years old and last time I checked, still a female. I was dx'd with Crohn's Disease way back at the young age of 28 in 1991. So, 22 years ago. Back then, I was soooo sick. I would have days of diarrhea, high fever, vomiting (when I could eat), etc. for days and then have days that I felt well, tired but well. Then it would hit again with a vengeance. That went on for months. Finally my colon ruptured and I was finally dx'd. Had my first resection at that time, 1 foot of my small intestine, my ileo-cecal valve, appendix and about 5 inches of my colon. I was in the hospital for about 2-1/2 weeks. Finally went home. One week post-op I spiked a fever so back I go. I had an intra-abdominal abscess from the first rupture. I don't remember anything for a week I was so ill. But once again, I pulled through. I have also developed severe arthralgia related to the Crohn's. I have learned to live and even sometimes to thrive with this debilitating disease. Since being dx'd I have developed several perianal fistulas that abscess quite frequently. Although I have not had a severe abscess (surgery/drainage, iv antibiotics) for about 5 years. Praise the Lord. Out of the blue this week my right lower back starts hurting. Just a twinge at first. Thought I might have hurt it moving a box. But then I started running a fever. Now I run alot of low grade fevers but this one jumped up to around 102+. Also my "normal" temp is 97.4 degrees so that is like 103+ for others. I had had a bathroom "accident" while driving home a few nights earlier. Did not make it to the toilet so TSHTF! Anyone, after my back started hurting in my kidney area with a fever, I figured I had a kidney infection. Couldn't get in to see my doc so I went to their clinic. A big no on the kidney infection. They sent me home with no diagnosis. Went to er on Saturday, they thought it was my gallbladder. Did an ultrasound but my gallbladder was ok so they decided I had a kidney infection. In their defense, I did have trace blood and white blood cells in my urine. They put me on Cipro and sent me home. Still no better. I saw my regular doc yesterday. He was concerned that my creatin levels were very high. He said that I had lost approx. 40% of my kidney function. At this point he is thinking I might have a renoalimentary fistula. So I had a CAT scan today. Again, praise the Lord, no fistula. I was really getting worried about that one. But I do have a thickening of my abdominal wall on my right lower side, internally caused by probable cellulitis. I start a new antibiotic (Augmentin) tomorrow. I have had cellulitis before but it was on external skin that is now very tough and thick. Is this cellulitis doing the same thing inside me but on a grander scale. I am so tired. I am so tired of being sick. Anyway, the cellulitis I had before coincided with the perianal fistulas appearing before. I had many "dye" tests among others and doctors telling me there was nothing wrong. EVEN though my skin was hot and swollen and painful and EVEN though I kept getting perianal abscesses they said I did not have fistulas. Well, we see how that turned out. After a couple of years of sheer agony, I have mutated twat with extra poop holes. So now I am worried that this bout of cellulitis might eventually end up being connected with a renoalimentary fistula also. But, I suppose I will worry about that when the time comes. That is the very short version of a very long story. My name is Lori and I have Crohn's Disease, nice to meet you.
06-28-2013, 01:55 AM   #2
DustyKat
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Hi lservies and

My goodness, you have been and are going through the wringer!

My daughter's diagnosis sounds eerily similar to your's, ruptured bowel - emergency surgery - diagnosis. Both of my children have had the same surgery you did at 22.

Your kidney's...Since you have inflammation in the region of your right kidney has hydronephrosis been ruled out? Although I would think they would pick that up in the CT but perhaps not if they aren't looking for it. The reason I ask is both of my children, and more particularly my daughter, had right back pain that led to an ultrasound. They thought she had an congenital problem called a PUJ obstruction but further testing proved this to be wrong. They did not realise what the problem was until they were operating. Her swollen and inflamed bowel was pressing against the right ureter causing an obstruction. That in turn caused the urine to back up into the kidney and thus swell causing pain. If it is left untreated it can lead to failure of that kidney. My son also suffered with it bit to a much lesser degree. Just might be something to consider.

Are you taking medications for your Crohn's?

Do you know what your inflammatory markers (ESR & CRP) and Faecal Calprotectin, if done, are doing?

Are you using any supplements since you have had your terminal ileum removed?

When they say your abdominal wall is thickened did they explain what they mean't to you?
I just wonder if what you have is a phlegmon. If that is the case it may also mask what is happening behind it.

My son was on Augmentin Duo Forte for three months when he had an intra abdominal abscess on his psoas muscle. He suffered no side effects with it and I hope it is successful for you. Good luck!

I am sorry for all the questions.

Dusty. xxx
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06-28-2013, 03:17 AM   #3
lservies
 
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Hi Dusty! Thanks for your concern. Well, after 22 years of Crohn's you think you know so much but I am ashamed that I am probably going to appear so uninformed. I have a new GI doc. My old one that was the best retired about 2 years ago. So I was off on a hunt. Went to a couple of docs that I did not care for. There was only one group in the area/hospital that I live. It is the group that was involved from my original diagnosis. Due to problems with them at that time, I really did not want to go back to them. So, when I heard about a new GI doctor in town I went to him. By this time I was tired of doctor shopping so I decided just to stick with him. I think he is a good doctor, just better at the diagnosing and not as interested in the long-term, maybe? I had a colonoscopy last year and he said that it looked the best it ever has. That's great. He sends me home with nothing. I live with diarrhea, on best days 5x per day. So now I am on no meds. After all this diarrhea and my first day post-colonoscopy of vomiting/bile and then eventually dry-heaving for hours, I go back to see him. He reluctantly puts me on sulfasalazine. After that is gone, again I am on nothing. There is much more to it but you get the idea. Anyway, my point is that I really have to stay on him for him to treat me. And I admit, I get tired of going to doctors and I am not so good at keeping on him. As for supplements, I take potassium, Vit D, Shots of B12, and Calcium. These have not been advised from my GI doctor but from my gateway doctor who is an internist. So other than those, I take other meds but not any Crohn's medications. I have never heard of hydronephrosis, so I looked it up. That makes alot of sense, however, would that not have shown up on the CT Scan? He, my internist, did not mention it. He did not go into any intimate detail about what he meant about the intra-abdominal thickening. Just likened it to the previous cellulitis that I had only internally. I had never heard of a phlegmon. So I looked it up also. Again, nothing about this from my internist. The good news is I have a follow-up appt. in a couple of weeks (maybe sooner if the augmentin doesn't help) and I will be armed with this new information. Once again, I have never heard of these ESR & CRP inflammatory markers and Faecal Calprotectin. I have heard of what is called a Sed (sedimentary) rate which measures inflammation, but not these others. How are these others different? I have had lots of blood drawn, so they might have been performed with results just not given to me because I did not ask for them. I hope I answered your questions. Thanks for the information. I will talk to my internist about these things at my next appointment. ~Lori
06-28-2013, 03:47 AM   #4
DustyKat
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Hey Lori,

No apologies necessary! I have two kids with Crohn's so as a parent knowing anything and everything about what ails them can become somewhat of a mission in life!

I hear you about doctor shopping and being disillusioned hun.

Kidneys: It should show up on a CT but it didn't with my daughter. That is not to say this has happened in your case but just don't rule it out if your symptoms persist. Also if you inflammation on your abdominal wall it may mask what is actually happening deeper down. I only say this because my son had a phlegmon that was attached to his abdominal wall and it distorted his CT readings.

Inflammatory Markers: ESR is the Sedimentary Rate. With IBD a CRP (C-Reactive Protein) is usually the preferred test as it responds more quickly to inflammation and also is far better at tracking progress when treatment commences as it is more sensitive to changes.
Faecal Calprotectin is a stool test that measures inflammation in the bowel only. So more specific than blood markers.

Diarrhoea: If you have had the diarrhoea since surgery I would say you have bile salt malabsorption diarrhoea. This is not uncommon when you have the terminal ileum removed. Both of my children suffer with to varying degrees and my daughter has tried both prescription and OTC medication but she neither suitable. There are many here however that do well on prescription meds like Questran or Welchol. As to my daughter, well she happened upon psyllium husks, they work much the same way as Questran does and they work wonderfully well for her. My son also uses them with great effect.

Supplements: Good to see you are taking what you are. May I also suggest that next time you have bloods drawn you have levels done for Zinc and Magnesium and supplement if needed. My son had an appointment with a new GI last Tuesday and he suggested we also add Turmeric so I am going to add that as well.

Gosh, I hope you can find a good GI that will look after your long term health. Go to the Doctor Directory on the top tool bar, Tennessee has 84 listed so I hope that will be of some help to you.

Dusty. xxx
06-28-2013, 11:27 AM   #5
lservies
 
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Thanks for the information. I have tried Questran before and while it helped it perhaps helped too much. I have to be really careful, what is normally diarrhea 5x per day can quickly go to constipated and not pass anything for a week or two. I would rather have the diarrhea. I will also check on the zinc and magnesium. Thanks again for all the information. ~Lori
06-28-2013, 11:43 AM   #6
723crossroads
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I am on Questran the generic (Cholestyramine) packets of powder. You mix with juice or water. You have to see what works best for you, 1/2 packet a day or every other day. I use it as I need it and it works wonders for me. try using smaller doses and every two or three days and see if that helps.
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